Since my blog seems to get a lot of hits from people searching for “Silent Sinus Syndrome”, I added a “Silent Sinus Syndrome” tag so maybe they can more easily get to all the other posts that I had about my medical problem. If my experience can end up helping some other person who has a wide eye and doesn’t know what’s wrong with them, then that is great!
I recommend Dr. Andrew Lane at Johns Hopkins University Hospital for all your Silent Sinus Syndrome needs. 🙂
I’m wondering if it is more common than I thought because it seems to pop up in searches a lot.
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July 25, 2007 at 11:23 pm
I got 5 people searching for Silent Sinus Syndrome yesterday
July 3, 2010 at 8:55 pm
who did your surgery? i am in wisconsin — looks like you are, too?
were you pleased?
i have a surgery date with Dr. Pasic — any thoughts?
this will be my second surgery — the sinus closed up again after a year —
July 26, 2007 at 7:10 am
That is very cool that your posts can help guide people on this issue.
(Wow–my comment is so broad that if I saw that come in on my blog– I would wonder if it was SPAM)
July 26, 2007 at 7:12 am
Once thing I was wondering about the WordPress Search counts— when they say 5 hits for a particular search term– are those all seperate people or do they count one person who searched on that term and then viewed five different posts?
August 20, 2007 at 2:28 pm
That is where I’m getting a lot of hits from too. We can be buddies in this craziness together. Feel better!
August 20, 2007 at 2:47 pm
One more comment- it was crazy reading through your posts because your story sounded so much like mine! I had LASIK at TLC too, but I’m up in Philly. I opted to have the orbital implant done, and my eye looked exactly like the picture of yours that you posted, all draggy and saggy. Hopefully this works!
April 24, 2012 at 1:08 pm
Hi Lora. I saw your comment as I was reading through the posts on here. I know it was quite a while ago, but I was hoping to find out if you ever had the orbital implant surgery done. I am currently having an issue with one of my eyes and would love to find a way to help it.
August 20, 2007 at 3:08 pm
Thanks for posting! I was reading through some of your posts too. I decided against the orbital implant at this time. I figured I can live with the wide saggy draggy eye. That surgery sounded scary going in through the eyeball and all [shudder]. I figure if later in life if it gets worse, I can always change my mind.
Did you at first blame it on the lasik like I did?
August 20, 2007 at 3:21 pm
if you both had the same problem from Lasik, isn’t it possible the Lasik caused it? Of course new industries make it a point to try to hide any ill effects that might hamper their profits. Has Silent Sinus Syndrome incidence increased as LASIK has become more popular?
March 8, 2010 at 10:27 pm
I have SSS and I have never had lasik!
July 29, 2010 at 2:16 pm
I had Lasik ….by the same Dr. Perraut that you spoke of in your blogs. About 5 months after I have diplopia and a droopy right eye. This really makes me wonder if the Lasik did not have something to do with it all. I have been through all of the same medical tests and non-helpful (and I’m being nice here) “specialists” also. I have had to patch my right eye for a year now just to be able to see (otherwise I have double vision). Every test comes back normal and these “specialists” have no idea and are basically like “an eyepatch is not that bad”. Whatever dude…you wear it! I just happened upon your blog today and I am going to check into this sss. Especially since I am currently having some sinus problems that will not go away and my right cheek has really swelled up. Thanks for all of the info and your willingness to share. I am in the NOVA area and would love to share my story with both of you…keep you posted on what happens. Esp if it is SSS and we both had Lasik done by the same doc.
August 20, 2007 at 7:23 pm
While it’s always possible that it COULD have been the lasik, if you look at what silent sinus syndrome is, I would say it would be highly, highly unlikely, seeing as the laser goes nowhere near the sinuses.
Just my 2 cents.
August 20, 2007 at 11:35 pm
One thing I wondered about the Lasik factor is maybe the issue wasn’t as noticeable before the surgery because it was concealed behind glasses??????? Is that a possibility?
August 21, 2007 at 12:27 am
We thought about that, but you can see my eyes behind the glasses in some pictures, and they are normal. And my eyes between May and November were normal.
I had a whole slew of pictures to show the doctors that yes, there is a problem, and yes, it is new.
September 27, 2007 at 6:08 am
Hi Carolyn
I also have SSS and i would like to know if your eye was sunken back and if after having the first surgery did the eye come back to normal. I had an operation on the 26 of September which was yesterday quit early to know anything to have my sinuses drain but its been only 1 day after the surgery and my eye still looks the same does it go back in time. I know i also have to go for reconstructive surgery at some point. I would love to hear back from you
September 27, 2007 at 8:41 am
Hi Jackie,
My eye wasn’t sunken back as much as sunken down. The upper eyelid was the most obvious symptom. My eye had the appearance of being really wide, and it made me look kinda strange. It especially showed up in pictures.
After having the sinus surgery, my eye has improved somewhat, but not completely. It definitely *feels* better. I think it’s still open when I sleep sometimes though, which is a little bit of a concern for me. But I still don’t think I will get the reconstructive surgery at this point.
September 28, 2007 at 10:07 am
Hi Carolyn
Thank you so much for getting back to me. I dont know if you have seen the sketch on one of the sites of sss but that is what my eye is like. I had the surgery on Sept 26-07 has I metioned but so far its still the same. I was told by my surgeon that it would go back after having the sinuses drain so I guess I have to give it more time.
I too has to go for reconstructive surgery at Mount Sinai I don’t have my appointment has of yet but I guess once this is heal I guess they will set me up. I am definitionly going for it, I want to be able to look in the mirror and have both eyes looking alike lol. Will I have to thank you again for getting back to me and I hope all goes will for you.
September 29, 2007 at 3:36 pm
Dear Carolyn ,
Thank you so much for your blog. It’s been very informative and…encouraging.
I have just been diagnosed with SSS and referred for an urgent surgery.
I was actually supposed to fly to Australia next week but had to change my plans. I’d like to rebook my tickets but I have NO idea how long the whole process may take.
Woulde you happen to know if flying, directly or soon after the surgery, is allowed? If so – when could I leave? A week, two…or a month?
Also, how long will I need to remain on antibiotics? I breastfeed and would love to continue. I could express my milk for 2 weeks or so to sustain milk supply…but I am afraid any longer would be quite difficult…
I know my doc should be able to give me all the answers… Problem is that I will not see him until the 8th.Therefore I would really appreciate your thoughts.
Warm regards
Aleks
ps. Sorry for my English – not my mother tongue.
September 30, 2007 at 1:21 pm
I am not sure about flying. I was thinking of flying to Colorado about a month and a half after my surgery, but I decided against it.
I did ask the doctor about skiing and he said skiing was fine, and I went skiing for a day trip less than a month later. I was fine, but got more winded than I normally would have.
Regarding antibiotics, I was supposed to be on the antibiotics for 3 weeks, I believe. But I ended up stopping them a few days early because I had a reaction to the antibiotics.
So, anyway, my recommendation is to talk to your doctor, but if you don’t want to wait until your appointment, you can try calling your doctor to get the advice.
September 30, 2007 at 3:34 pm
Oh, cheers for your quick response!
Why did you decide against flying to Colorado? Were you in any pain? Or just in case…?
September 30, 2007 at 6:52 pm
It was a “just in case” thing. I wasn’t sure how long my recovery was going to be, so I didn’t want to risk it. Of course, my recovery was fast (I was never in any pain, and didn’t even use the pain medicine they prescribed to me).
October 23, 2007 at 10:15 am
Hi there,
Im just searching silent sinus syndrome as im sure im experiencing it at the moment. My right eye has suddnely become very sunken in – i visited an opthamoloist who says there is nothing at all wrong with my eye but the CAT scan showed sever sinus inflamation. All the symptoms sound the same as what I’ve read on other sites – what I can’t find are any pictures of any sufferers to see if my eye looks similar? Any ideas where I might find some? Im seeing a ear nose and throat surgeon later in the week – is that the right place to start? Im dying to find an answer to this problem so any help would be much appreciated?
October 23, 2007 at 12:28 pm
You need pictures? I got pictures.
The pictures of my CT Scan and MRI are here:
http://www.flickr.com/photos/clintjcl/tags/brain/
Some examples of my “wide eye”:
http://www.flickr.com/photos/clintjcl/tags/wideeye/
November 20, 2007 at 10:12 am
Hi Carolyn
I left a comment before, and asked for some pictures, thanks a million they really helped. I subsquently seen an ENT Specialist who found cysts and mucas in my right sinus and just this week had the sinus drain surgery. The ENT doctor said it was this that may have been pushing my irbit back but its unlikely my eye would get better – Is this a similar result that you got or has your eye improved at all since the drainage?
They never gave me any other options other than that my eye would remain assymetrical – did yours improve at all? Apologies for al the questions its just im finding it quite difficult to find any info on this disease and my doctor didnt even use the term SSS its just all my symptoms are exactly the same as you describe.
Thanks
Rachal
November 20, 2007 at 1:14 pm
I believe my eye is a little bit better since the sinus surgery. It’s not completely better, but it’s not as obvious to me.
There was a separate operation through an opthalmologist that would have inserted a plate under my eye to replace the eroded bone, but I opted not to go through with it unless my eye got worse or didn’t get any better. It would have been the same surgery they perform if someone breaks that bone (if they were hit in the face or something). It was called Orbital Bone Blowout or something like that.
February 13, 2008 at 8:21 pm
Carolyn,
I am currently fourteen years old and have just recently been diagnosed with SSS. I had a CT Scan before to look at a benign tumor i had in my eye and from that, they found out about my sinuses. Nothing has happened to my face or eyes yet that has anything to do with my SSS, but I’m having surgery over Spring Break this year. I’m nervous because the doctors say that I will be out of school for about a month, and that I will most likely feel uncomfortable for about two weeks. I wanted to know from first hand experience whether that was just a doctor’s warning about what could possibly come (but most likely won’t), or if that really does happen to most people. No one I know has ever had this done, and so I’ve got nothing about it.
February 17, 2008 at 10:00 pm
i had lasik in 1997, went from 20-450 to 20-18 on both eyes. my sss was discovered while my son had his hearing corrected with ear tubes (4 yrs old). after family background info provided, my contribution with sleep apnea, had CAT scan, right sinus completely closed off & packed with goop with right eye bone deterioration requiring orbital implant. my surgery was 2.13.08 outpatient @ Methodist Hosp germantown, there was no pain & i did not require pain medication. i have been a horrible snoring mongrol since i can remember (high school), well prior to lasik so i can assure you, my opinion there is no dots to connect. sports injury from childhood, cracked nose, bone spur found in left nasal & removed, nosed cracked & straightened, orbital implant done at the same time. Dr Duncan & Dr Flemming, my experience did a fantastic job & highly recommend both if in memphis. I would not think you would be out a month from school unless you have other requirements for surgery not mentioned. i had no pain, none. light discomfort (more like lite sinus pressure at best), no nausea, actually quite unbelieveable. i am keeping my fingers crossed to see if this corrects the sleep apnea. stents being removed thursday 2.22.08. good luck
August 11, 2008 at 7:20 am
Hi –
I was diagnosed with SSS back in 2/2002 and at the time there was little known about it. Mine was due to a wisdom tooth having grown in my max sinus, which caused a sinus infection that I couldn’t clear. When my body tried to reabsorb the tooth, it also reabsorbed the bone under my eye. I had the endoscopic sinus surgery done in April 2002 and the orbital reconstruction done in June 2002, both at Johns Hopkins. Both surgeries went great, with a slight complication on the sinus surgery (bleeding that required an ER visit). The reconstruction was much easier than I anticipated and I would definitely recommend it if you have any functional problems (eye stays open when sleeping — mine did) or cosmetic ones. I had 8 mm difference sinking back, and 6 mm difference sinking down — and now I only have 1 mm difference sinking and 1 mm difference higher. My doctors were Dr. Marion Couch (ENT) and Dr. Elba Pacheco (Ophth) at JHs, and both were excellent. If you have any questions, I’m happy to help!
November 18, 2011 at 12:55 pm
Hello,
I have SSS since 2005. My eye did not get better after the sinus surgery. I have about 6 mm difference sinking and would like to have a surgery as it is getting really problematic. I was wondering how long it took you to recover for the orbital reconstruction, were you in a lot of pain after this surgery, how long until you can drive again? I do not know what to except. I’m looking for a good Opth in the NY area.
Did you do a sinus reconstruction as well or just endoscopic surgery? I’m asking that, as my sinus never got back to his original volume.
Thanks! A.
August 18, 2008 at 7:58 pm
hi guys im 22 and im also affected by the silent sinus syndrome 😦 . I did see an ophtalmologist who said evrything was alright but I kept thinking about what was wrong with my eyes. I searched like a crazy about evrything on eye disease (thought I had a strabismus then I thought it was my macula that moved from its original angle what they call kappa angle) Until i heard about this SSS. Im happy to see that theres a lot of people like me and im not alone. I searched a lot about this disease, seen a lot of informations about it but this is one of the few sites (if not the only one) where theres people talking about it. Now that ive seen a doctor who diagnosed SSS due to a left sinus completly blockd I know that I was right. Im scared and really depressed about it, I feel like I did something wrong cause I always knew my left sinus was blocked and I didnt except it to change my faces bones. Now I look like theres an eye lower than the other and wider. taht really affects me and I have suicidal thoughts now, I always was a guy who was listening to others problems and trying to help them. The difference between both eyes is not that great but I still want my eyes to look like anyothers person. Sorry for my english im not that bad at spelling but right now im feeling like I dont care as im crying right now. I just want to say thank you caroline for your site and I can understand what you gone throught.I also wana know if someone who had orbital reconstruction had good results. and if so how good there were? Thanks a lot evrybody I think im going to sleep right now have a nice day
August 18, 2008 at 8:08 pm
Hi Frank,
Thank you for your comment. I am sorry to hear about how affected you are by Silent Sinus Syndrome. I didn’t have the orbital reconstruction surgery, but the wideness in my eye definitely lessened when I had the sinus surgery alone. My advice would be to take the first step of getting the sinus surgery, and then if you are still bothered by the wideness of the eye, then you can always do the orbital reconstruction surgery later. I hear it’s a more risky procedure, so I was hesitant to do it myself. I was only going to go through with it if my eye stayed wide.
I will say that it was hard to convince people that there was something wrong with me because they didn’t notice the difference in my eye until I pointed it out. I had to print out before and after pictures to show the doctors when I was trying to get a diagnosis. They didn’t notice that much of a difference and told me that “no one is perfectly symmetrical”. So I know how frustrating it is to know that something wasn’t right, but nobody else notices, but on the other hand, people probably don’t notice it as much, so cosmetically, you are probably not as bad off as you may think.
I hope that you can get through this difficult time. If you are in the DC/MD area, I would greatly recommend Johns Hopkins.
August 19, 2008 at 9:10 pm
Thanks for your reply carolyn it really helps. Im going to have the sinus surgery done first then wait a moment and think about the orbital reconstruction. Afterall its not that bad but I still blame myself for not complained about my sinus at a younger age. Tahnks again and have a nice day! Ill post back to tell you the results if you dont mind, Its so helpful to have some people to talk to who had the same problem and this problem is so “rare” but I dont think its that rare because we might think theyre a lot of people on earth having problems with their sinuses and if they wait its going to be diagnosed as SSS. Thanks a lot again!
Frank
August 21, 2008 at 5:15 pm
Hi caroline,
i was diagnosed with sss in feb 08 it did take very long for a doctor to recognise as i had to see 4 of them before i came across one who told me i had sss.I was really scared as i to could’nt find any info on sss my right lower eyelid had fallen and my eye was also wide and sunken i lost all confidence in myself as i use to model and like u said its very noticable in photos so i can no longer do modelling.I had the sinus surgery in may 08 my nose was drained and i also had a splint in the right side of my nose yes it was uncomfortable especially when sleeping as u can not breath through your nose so my mouth felt like sand paper during the night i did’nt find the surgery painfull but i cant say that it worked as my eye is still wide and when i went back for a check in july it was getting wider so now i have to have the implant put in, im very scared about this as i cant find what the complications might be after or during surgery can u please help Thank u,
August 21, 2008 at 8:45 pm
Hi Karen,
I talk about the risks of the implant surgery here: https://carolyncasl.wordpress.com/2007/03/10/opthalmologist-appointment/
They were minor risks, I think.. The two main ones that had stuck out in my mind were double vision and blindness.. Those are pretty serious risks that I didn’t want to take at the time. Luckily, just the sinus surgery fixed my eye, but if it had stayed wide, I would have taken the risk.
I think the procedure was called orbital floor blowout.
August 23, 2008 at 2:01 pm
hi again carolyn
I wante to know why the eye look bigger on the affected side. Since the sinus is like a vaccum and affect the orbital bone why the eye is looking bigger? especially on the scan? mine also look bigger and Im quite confused about the question.. I didnt ask my doctor yet but Id like to know what it is
August 23, 2008 at 2:46 pm
I never asked that question to get an exact answer. I think for me, my eye was looking bigger because it was sinking into the orbital floor and so my eye lid was just showing more of the eyeball than it normally would have. Your doctor probably has a better answer than me.
August 23, 2008 at 6:59 pm
Hi caroline,
Thank you.
August 24, 2008 at 2:47 am
I red that its becuz of the pressure of the sinus, the eye get really bigger. Did yours stayed the same size or it got any better after the surgery?
November 30, 2008 at 12:01 pm
I scanned your ‘journey’ and unfortunately I can relate to it all. I was diagnosed with myasthenia gravis when my enopthalmos suddenly appeared one morning, so the neurologist looked no further. I am an RN, having practiced as a critical care nurse in a level I trauma center for 8 years prior to my current practice as a rehab case manager. I scheduled my own opthalmology appointment, which led to referral after referral (and delays) and 9 months later, I am 2 weeks away from surgery for the SSS. I have been dealing with the eye dryness and visual changes for months as my eye continues to sink into the orbit. I am hopeful that the surgery will restore some normalcy to my face, but I will likely have to undergo a secondary surgery to place an implant into the orbit to raise the globe.
I would love to hear how you are today in comparison to your original presentation. My eye is recessed enough that my face on that side takes on the look of a skeleton as the hollow of my cheek is also recessed from the negative pressure, and I am tired of the stares in public. I will likely undergo having the orbital floor implant as well as I have alot of uncomfortable eye symptoms and my quality of life is not that great right now between the myasthenia and the SSS. For anyone undergoing the same nightmare post a note!
December 11, 2008 at 8:02 am
hi all, im not sure what i have but my symptoms sound like i may have sss. im in the process of having a few tests. i had a septo/rhinoplasty in april 2008. for a little while now i have noticed my eyes, in particular my left one is looking very sunken, ive lost the brightness, it looks expressionless. i also have an infection on my incision scar after the rhinoplasty and docs are saying the infection is getting me down and making me lose appetite hence reason of hollow look to eyes. i mentioned sss but they dismissed it..they havent heard of it. i have pressure behind my eye and a burning sensation in the corners of my eyes, a little tingling in cheek and roof of mouth…am very worried
December 11, 2008 at 4:50 pm
Frank, the size of my eye got better after the surgery. It’s not 100% better, but it’s a lot less noticeable. I didn’t do the orbital floor implant surgery since it got mostly better.
Paula & Serena, Good luck!
January 14, 2009 at 6:43 pm
Hi again caroline,Firstly [happy new year i hope all is well] i sent a post 2 u back in august 08.well im back again…lol i was reading through the blogs that other people have sent and i came across somebody by the name of GG she sent a post in aug 08 she explained that she had the plate put in well i to have to have that done as i have no choice because my eye is sinking into a hole basically, the sinus surgery didnt work for my situation [i do hope it works for others].I would like to ask GG how long recovery was and did they remove any bone as that is what they said they might do to me when operating,i wont lie im very worried i would appreciate it if u could maybe find out for me.caroline god bless you for having taken the time to help me last time this world needs more people like yrself. xx
January 15, 2009 at 10:19 am
Hi everyone,
Sorry I didn’t get back to you sooner, Karen! I don’t check the site on a regular basis since my problems due to SSS have mostly resolved. Thanks for pursuing your question, and thanks to Carolyn for forwarding!!
The orbital reconstruction surgery was by far easier than the endoscopic sinus surgery. I have a severe eye phobia, so knowing what the surgery entailed was my worst nightmare. I do think a lot of the success (and ease) of my surgery was due to the fantastic surgeon I had – Dr. Elba Pacheco. She’s in Maryland and I would highly recommend her. She’s one of the few traumatic ophthamologists I researched that had done more than one or two reconstructions due specifically to SSS (most have only done it due to orbital blowout fractures, and there are different issues with SSS). If you’re not in the DC/MD area, you might consider calling her to see if she recommends anyone in your area. I also highly recommend the Wilmer Eye Institute at Johns Hopkins where I had the surgery.
The surgery itself was relatively quick and I think I was awake and aware after only a couple of hours (vs. 7+ hours for the sinus surgery). I had no pain, which is a miracle since I’m allergic to codeine, so all I would be allowed to have was Tylenol or Darvon anyway. The one freaky thing I would warn you about is that I had the surgery using an incision in the inside of my lower eyelid (instead of through the lid on the face), so they had to put a stitch in the lid which they taped to my forehead. This helps prevent the complication of your eyelid contracting around the incision and pullind down and away from the eyeball. It wasn’t painful, but a little freaky since it has to stay in for 24 hours. When they removed it, I didn’t feel a thing and again didn’t need pain meds. My only complications (and I’m not 7 years out from the surgery), were nausea and vomiting from the antibiotics after surgery, and I now have astigmatism in the affected eye only, so I have to wear glasses. They’re not sure if the SSS or implant caused my eye to change shape slightly (astigmatism is extra curvature of the lens), but I wasn’t born with it and it’s only in that eye, so I suspect it’s the cause. However, compared to the horror I was left with after the sinus surgery (over 5 mm difference both sinking and lower in face), it was a price I am happy to pay. I now have only 1 mm difference (sunken and up), and no one can tell the difference.
I’ll check the site more frequently to answer any other questions on the surgery, so let ’em fly if you want to know anything!!
Thanks and good luck to everyone struggling with SSS — it’s a hard road no matter the path you choose!
GG
March 2, 2011 at 5:18 pm
Do you remember how long it took for the swelling to go down? I am 1 week post op and that the swelling is still pretty prominent. I know they tell you 2 weeks, but what was your experience?
March 3, 2011 at 5:51 am
I think it was about a month before the swelling was mostly gone. It did seems to take some time (from what I remember) for my eye to “settle” into it’s final position. I think it took about 4 months before it settled to where it is now.
January 15, 2009 at 10:31 am
Sorry, re-read your post and realized there were a few specific questions I didn’t answer:
1. how long recovery was: I was out of work (desk job) for 5 days, and wasn’t allowed to do anything requiring exertion (housework, exercise, etc.) for 2 weeks. Recovery was far quicker than from sinus surgery, but you do need to be careful not to exert yourself so you don’t cause bleeding into the eye socket (very serious complication that can cause blindness).
2. did they remove any bone?: By the time I was able to have the surgery (after FINALLY getting diagnosed and going through the sinus surgery) I didn’t have any orbital floor left at all. Dr. Pacheco said there was only a thin membrane separating my orbital contents from the sinus contents. I have a MedPor implant replacing the entire orbital floor, and it’s anchored at the far outer edge (near my temple) by a titanium screw to my remaining eye socket bone.
One other thing I forgot to mention is that they use titanium screws to anchor the implant, so you can’t ever have an MRI again since it would magnetize the screw and pull it out. Not a huge deal, but I do have to remember to tell doctors when they want to do any kind of imaging tests.
Thanks!
GG
February 10, 2011 at 5:56 pm
hi GG,
I am scheduled for the orbital floor implant surgery in 1 week. How was the swelling and bruising on your face? How long did it last? Could you see okay after? I also work a desk job, in front of a computer all day. Am having surgery on Wednesday and plan to return to work on Monday, hoping that’s enough time and I don’t look too beat up!
February 10, 2011 at 6:36 pm
Hi Deana,
I had a bit of swelling around my eye, but no bruising at all. They used a stitch through my lower eyelid and taped it to my forehead for the first 24 hours to reduce the possibility of my lower lid retracting too much as it healed (the incision was in the inside of my lower eyelid, so I don’t have a visible scar). I could see fine as soon as they removed the stitch (hard to see with your eyelid taped to your forehead! 🙂 ). There was VERY little pain, just feeling of stretching. I’m allergic to codeine, so I was worried since I could only take Tylenol, but it was fine. I think you might want to take a couple of additional days if you can. I didn’t look beat up or anything, but they were pretty adamant I take it slow for the first week to reduce the risk of bleeding into the eye socket. Any other questions, just let me know! It was the best decision I made to go through it, and I’m unbelievably happy with the results and that I kept my eyesight. GG
March 2, 2011 at 5:20 pm
Thanks for the info. My eyesight has come out well. I have some pain, but not unmanageable. I just asked you above about the swelling.
November 18, 2011 at 1:06 pm
Hello Deana,
I have a question regarding you eye reconstruction, I have SSS since 2005 and did not do the implant yet. I have to admit that I’m afraid. how was it? and problems after the surgery?do you feel that you have an implant under your eye? what to except for the first few days? who was your doctor?
Happy thanks giving, Anat
November 18, 2011 at 1:28 pm
Hi Anat,
I was also afraid to do the implant. My ENT doctor told me not to, too risky. I decided to do it though. I’ll admit, it was a tough first few weeks. But I’m so glad I did it. My eyeball is back in place and you cannot tell I have an implant. The first few days expect your eye to be totally swollen. Your face will look like you were punched, bruising and everything. It takes a few weeks to heal properly. And you have to take it very easy. I had a baby at the time and I could not lift her for at least a week. It was hard. But I’m glad I did it and all is well now.
January 15, 2009 at 9:00 pm
Thank you so very much for your info.I wish i could see the doctor that performed your surgery but im based in london england and i did ask my surgeon how many time she had performed this kind of surgery and she said many times but i have a feeling that their just doing the same as they would if you had a fracture blowout which i didnt think was different to sss surgery as they make it sound like its nothing to worry about.I had the sinus surgery in may 08 what they did was made a incision inside my mouth in the crease above my teeth and put packs in my cheek along with a splint in my nose i had to keep them in for 3 weeks and have them removed yes it was very uncomfortable and made no difference.Im now going through alot of pain as they say i have a blockage inside where my sinus is my eye isnt really bad as last time measured it was 3mm wide and my eyeball has fallen i didnt want the constructive surgery but im being told i have no choice as it will only get worse.When u say u have to wear glasses that worries me as im 33yr and have always had good eyesight im also worried about dissfigurement of my eye and also blindness or double vision you have been a great help as ive now learnt more from u than my own surgeon as sss is rare they are training other doctors on my situation [so im a bit of a guinni pig i think]my op is 5th feb and i just want it over and done with.I would like to know if the sinus surgery they performed on you was the same as what they had done to me reason i ask is when u had your construction surgery [plate fitted]you said they gave u a stich to stop your eyelid contracting and they removed it after 24 hours well they havent mentioned that to me as far as i kno im only in as a day surgery patient.Godbless x
January 15, 2009 at 9:01 pm
Thank you caroline for forwarding my questions to GG.xx
January 16, 2009 at 8:53 am
Hi Karen,
I’m so sorry to hear you’re having trouble getting answers from your doctors. Unfortunately, SSS is so rare that a lot of times we’re left to fend for ourselves on getting the information. I actually had one eye doctor tell me I had nothing to worry about since my actual vision in that eye was fine!!! When I showed him the journal article I’d found on SSS and asked him it that could be the problem, he laughed and said “Do you know how rare that is?”. I’m so glad I got a second opinion, but it was painful to deal with such obtuse and insensitive doctors.
The delay in diagnosis caused so much damage that I had no bone left at all by the time I got to the reconstruction. My SSS was caused by a wisdom tooth that was growing in my sinus cavity instead of my jaw, causing a constant sinus infection, and my body was trying to re-absorb the tooth and re-absorbed my eye socket bone instead. So my case is a bit unusual even for SSS, and there may definately be parts my course of treatment that were unique to my situation. I would encourage you to read everything you can and make sure you get a second opinion if you have any doubts. It can’t hurt, and it might help.
I had endoscopic sinus surgery (where they go through your nose), instead of the kind you had. They removed the wisdom tooth and opened up the sinus a bit so it could drain better. I did end up with some post-op bleeding that I had to go to the ER for.
There is a risk of blindness with the eye reconstruction since they’re messing with the socket. The main risk, I believe, is bleeding into the eye socket after the surgery, since it’s a closed space and the bleeding would cause an increase in pressure on the eye. If not corrected in time, this could cause blindness. I didn’t have a choice in having the reconstruction, since I had no bone left, so my eye was low enough that my optic nerve was in danger of damage from resting on the eye socket bone on the back of the socket. If I hadn’t had the reconstruction, I was told I would have lost the sight in that eye. So for me, it was not really a choice, but everyone needs to weigh their own situation before deciding on surgery.
The reason for the stitch in my eyelid was that they made the incision on the inside of my lower lid (not the outside on my skin). I understand that they can do the surgery either way, but having the incicion in the eyelid does not leave a visible scar, and may have a lower risk of the eyelid pulling away from the eye (technically called ectropion, I think). I was kept overnight after the reconstruction, to monitor for bleeding into the socket. You might want to consider asking your doctor for the specific details of what they want to do surgically, as this will help you know what to expect long-term.
I’ve always had perfect vision before this as well (and I’m also 33!), but in my case the glasses are a fine trade for being able to see in that eye. I also don’t know for sure that the surgery caused the astigmatism — it’s just a theory. Unfortunately, it’s hard to extrapolate our experiences with this since they’re so unique!
Does that help? I know it’s hard trying to find information on this, and feeling like a guinea pig on top of it! Please let me know if there’s anything else you want to know.
Thanks,
GG
April 4, 2013 at 12:41 am
Which eyebone? Orbital floor? Because apparently my face ate mine
I’m finding out on Monday what the surgery plan is- but it will b with a sinus dr and an eye plastic sergeon.
January 16, 2009 at 11:28 am
Thank you so much u have been a great help i will keep u informed as i may have more questions for you if thats ok.
Godbless xx
January 16, 2009 at 2:11 pm
Absolutely Karen! Ask away, and keep us all posted!
January 18, 2009 at 10:56 pm
Hi Carolyn and all,
This blog is a great source of personal experiences related to SSS, I would like to share my own and hopefully contribute as much. I’m a 37 yo male and was diagnosed with SSS in July 2007, my symptoms were eye dryness at night, double vision in certain angles and of course sunken eye. It took a while to find what the problem was, as apparently it is a rare condition. A CT scan showed the blocked and infected left maxillary sinus. 6 months later, I had the endoscopic surgery to open up and drain the sinus, it was really a painless operation and I was back to normal within a couple of days. The doctor was confident that the sinus would expand back but maybe not to its original size. Before the operation, my left eye was about 4mm lower than the right, it is now about 2mm lower, apparently it will not improve any further after all this time. The symptoms are still there but to a lower degree. The double vision is what bothers me the most, basically looking anywhere but straight is doubled, it is very annoying while doing activities and especially while driving. I have met a surgeon to learn more about the eye implant, I’m scheduled for an operation some time this year (2009), In Canada, healthcare is free but there are long waiting lists… 😐 I’ll see if I go through with it, in the mean time I’m reading more about the operation and the associated risks, I have time to change my mind…
I’m not sure what caused SSS in my case but I have a history of facial related injuries, I had broken my nose at the age of 14 and never got it fixed, I broke my nose again in 2002 and 2005. The 2005 incident was followed by a severe sinus infection which may have played a role in the SSS. Finally got my nose fixed in December 2005. Looking back at pictures, I can see that prior to my 2005 incident, my left eye was normal and then slowly getting worse until 2007. The doctors mentioned that this is a very slow process and it takes years to change the bone structure, so the process of implosion of the sinus could have started before 2005. I didn’t really notice before my operations but my breathing was really obstructed, partially because of the crooked nose and blocked sinuses, today it is great. The lesson I have learned in all this is to look after the problem when it happens and not let it linger too long because it can create other and bigger problems. Good luck to all with their respective operations. I’ll re-post once I get my implant.
MV
January 27, 2009 at 7:56 pm
I am actually having surgery for SSS this Friday. I have had a near constant sinus infection and went to see an ENT doctor who pretty quickly diagnosed it as SSS. My one is is a bit lower and sunken but I can’t really tell (bags under my eyes from never sleeping distorts things). I am hoping that the surgery lessens the facial asymetry, but I am also really hoping that it helps with the chronic stuffy nose that I have had for the past year or so. It seems like a lot of the replies focus on getting your eye back into place but I also wanted to know what experiences people had in regards to helping with any sinusitis or similar issues and whether this surgery cleared that up. Thanks.
January 27, 2009 at 8:08 pm
Hi PM,
Since I didn’t have any sinus symptoms with my SSS, I can’t answer your question. The only symptom I personally had was the wide eye.
January 28, 2009 at 5:57 am
The sinus surgery did clear my problems with sinusitis, but I also had a wisdom tooth blocking the sinus as an underlying cause. I haven’t had a sinus infection since the surgery in 2001.
April 8, 2009 at 11:41 am
WOW! I am so thankful to find you all! I have recently been diagnosed with SSS and I am a little freaked out to be honest. I was actually diaganosed via an Ophthalmic Plastic Surgeon. I thought I was going to have an eyelid lift and it turned out to be SSS! I have yet to get in to my ENT so I dont know the extent of my “damage” yet. I was wondering though – do I need to find an ENT who has specifically treated SSS or will any competent ENT be able to fix this? I live in the Dallas area and we have some of the best doctors in the world here but I haven’t found one yet who has done surgery for SSS. Also, have any of you been asked to be a traveling roadshow to show off your condition to other doctors? I have actually been asked by a couple of Dr’s to come let them look but have not done that yet. just wondering if anyone had any experience with that?
Thank you so much for starting this post Carolyn. The only significant info I’ve found is right here!
May 4, 2009 at 5:46 pm
Can one of you tell how much is the fees for SSS surgery? and also reconstruction surgery? Does normal medical insurance cover these in US?
Thx.
May 4, 2009 at 6:19 pm
That’s a good question, MM. My insurance covered most of it. I do not have exact figures anymore, but I did pay over $1,800 to the hospital and the university. I don’t remember if there were any additional payments to other labs or anything. I think it would depend on your insurance.
May 6, 2009 at 10:35 pm
Thx Carolyn. I am very frustrated as doctors are not giving any importance to my concerns, and wanting to know more into it. I saw an ophthalmologist who said everything seemed normal to him; Now I have an apt. with my E.N.T. When I asked this doctor if he had treated SSS before, he hadn’t even heard of the term. Can anyone help in which direction I should go? I leave near SFO and not sure if they have any good doctors who deal with SSS. I am not even sure if I have SSS; but all the symptoms seem to be there.
Thx.
May 6, 2009 at 10:45 pm
Hi MM,
For me, it was a long process getting it diagnosed. I had doctors tell me that “not everyone is perfectly symmetrical” and dismissed my concern, so I gathered before and after pictures showing my right eye being wider than the left eye.
I also had an ENT who had never heard of Silent Sinus Syndrome tell me that I didn’t need surgery. Quite a flip-flop from the ENT who said I needed surgery within the month. So that is actually how I ended up at Johns Hopkins University Hospital. I needed a third opinion from real experts because the regular doctors just weren’t giving me the answers I needed.
May 12, 2009 at 12:04 am
Carolyn, Thx for the prompt replies.. I really appreciate your help.. Do you know the name of the surgery you underwent? Is it an outpatient surgery..? How long should one be away from work? What’s the recovery time..? How can a doctor identify if I have SSS? Is it through a CT scan…? Do you know how I can find doctor’s familiar with SSS in my area…? I am worried the doctors whom I talked over phone haven’t heard of this before…
July 14, 2009 at 9:43 am
Hi all,
To follow up on my previous post. I was finally operated and got the implant under my left eye. Can’t feel the implant per se but I must admit that the swelling and the redness around my eye is a bit uncomfortable a couple of days after the surgery. I had mild pain right after the operation but a tylenol was enough to take the pain away. For those who had blackeyes before, it’s about the same feeling. My vision is a bit blurry because of the swelling and also because the eye itself is higher than it was, so I kinda have to re-train my brain to the new eye position, 5 days after the operation I can say that the vision is almost back to normal. The implant that was inserted was about 7.5mm thick even though my eye was just 2mm lower, the doctor said that the eye will settle down over time, as of today, both eyes are almost at the same position. The worst part of it for me, was the recovery after the general anesthesia, some recover easily, others find it more difficult. I don’t get sick but I feel so slow and tired for 2 days. I didn’t get the eyelid taped to my forehead after the operation as GG had, simply bandages over the eye which were removed an hour or so after the surgery.
I found this video on the internet just before my operation, I’m not sure it’s a good idea to watch just before… some might prefer not knowing, in my case it allowed me to know more about the surgery and come up with questions to ask the doctor. For example, in my case they did not use a screw or a wire to secure the implant as shown in the video, instead, they simply sewed the implant with other surrounding tissues, reducing foreign objects and minimizing the risk of reject. After the operation, I have to take oral antibiotics and put ointment in my eye for the next 2 weeks, no problem there. I’m also off work and physical activities for 2 weeks. Another thing is that the left side of my nose feels numb; apparently it is due to a nerve that is frozen during the surgery, the feeling should go away after a couple of weeks.
Overall I have to say that the Sinus operation was less painful for me, less visible, and the recovery time faster than this one, but still relatively easy.
http://stream2.objectwareinc.com/PorexSurgical/OrbitalFReMEDPORSurgImplant_1000k.wmv
July 29, 2009 at 9:44 pm
3 weeks after the operation – still a bit swollen and sensitive under my eye, most people don’t notice. I have started running and biking again. Vision is good from all angles.
August 7, 2009 at 6:31 am
Thank you so much for this blog.
I have been reading it since I was first diagnosed in early 2007. I had the sinus surgery one month later (after I had a baby!).
I have just started reading again as I am contemplating the orbital reconstructive surgery. I had some improvement after the sinus surgery, but I still have a 3mm difference (back not down).
Did other people have an eyelid that looked stretched (making the eye look big)?
Did the appearance of the lid improve with the plastic surgery?
I am also 33 yrs old and don’t know if it’s worth the risk, but I find that my eye is good in the mornings (looks like normal eye) but looks wide in the evening or if i am tired. Does/did this happen to anyone else?
Thanks.
August 23, 2009 at 8:13 pm
Hi Lis,
I had the same situation where my eye looked “normal” in the morning and bigger at night. The doctors explained that the muscles could compensate in the morning but we’re probably getting tired as the day goes by, hence going back down. It can also be that eyes can get puffy in the morning and that helps move the eye up and look more normal.
In my case, the surgery solved the lid problem. So far, I’m happy I did it.
September 26, 2009 at 11:38 pm
Hi Lis & MV,
Yes, I am the same. My bad eye looks far worse at night. It almost appears normal in the morning. I do think morning puffiness/fluid retention causes more orbital volume, hence it looks better. By night, muscles are tired and fluid has gone, so there’s more recession and decompression.
(my eye is set back more than downwards).
I want to have surgery to fix this…..not sure who is the best to see. I live in Australia. Maybe I need to travel to the US?
October 6, 2009 at 4:58 am
Hey Bonnie,
I live in Australia too. I saw Dr Julie Agnew (Brisbane) for the sinus surgery – which was great. And I have had a consultation with Dr Sullivan (Wickham Tce, Brisbane), about reconstructive surgery – still deciding.
Hope that helps,
Melissa
August 13, 2009 at 5:54 pm
Hey I was diagnosed with sss early 2007 also after having my first child! I had both surgerys done at once and it worked great excep now I have noticed the inner wasl of my nose on that side are now closing up again and my eye has been feeling a lot of pressure. Has anyone heard of it coming back? Let me know thanks!
August 26, 2009 at 4:34 am
Hi all,
Firstly, a big thanks to Carolyn and all who have taken the time to discuss SSS, its nice to be able to communicate with people with the same rare problem.
I too have be diagnosed with SSS age 35. I am on a waiting list for the sinus surgery, which should happen in October this year. I’ve read some people seen an improvement on the eye from the sinus surgery itself and I was just wondering when exactly did you notice this improvement was it over the first month post operation, or longer??
Also the doctors seem to be try to put me off having the orbital floor reconstruction surgery, just wondering if I should push forward with that option. Funny enough I just had my first child. Seems there a bit of a trend there, I know that during pregnancy that increase nasal congestion is a symptom.
I would like to say that the eye is not bothering me, but it does, I feel a bit shy in company. Also I loved my eyes beforehand, and now I just dip my head, or try and make a joke of it, but really inside I just feel sad. The doctors is kind of saying I should really just learn to live with it!!! All feedback is gratefully appreciated.
Mandy (Glasgow, Scotland)
August 26, 2009 at 8:08 pm
Hi mandy,
I understand how u feel,i myself was diagnosed with sss in 07 ive had both ops done(sinus surgery)and (orbital floor)i had no luck with the sinus surgery but its different for everyone as it has worked for some people.After the sinus surgery i thought it was better, as it did start to look better after i had the packs removed which was 3 weeks later but unfortunetley my eye started to get wider again so i then had to have the orbital floor surgery which i was very nervous about but if im honest it really was’nt at all painfull just a bit uncomfortable.Im 33yr and i noticed my eye when i was 6mth pregnant. Have faith it can be made to look better through surgery which i found after having the orbital floor op done.Alot of doctors dont kno about sss and no u dont have to live with it if thats how your feeling.Im based in london and the name of my consultant is ms olver she is based at charing cross hospital in hammersmith she is a fantastic surgeon who knos all about sss.I hope this info has helped you. Goodluck
November 11, 2010 at 1:25 pm
Karen – Just wondering if you have a contact number for ms Olver?
August 27, 2009 at 4:02 pm
Hi Karen,
It’s so nice to hear back from you, and the doctor information is very helpful. Will force the issue once I have the sinus surgery.
I take it your eye looks a lot better since the Orbital floor, i’m interested in the results, does it look normal or almost??
I think I would like to get the 2 ops as it totally gets me down. I also feel my cheeks a little swollen too, but that might just be the blocked sinus causing it to push out a little more.
How long did you wait between the ops?
Thanks again for taking the time and I am glad you have things resolved.
I’m thinking about baby number two, so would like to get this done beforehand as you know what its like them your pregnant, you can’t really get anything done medically.
Thanks and best wishes. Mandy
August 28, 2009 at 10:03 am
Hi Mandy,
I had both the sinus surgery and orbital reconstruction done in 2002 (SS in April and OR in June). They had to wait 6 weeks after the sinus surgery to make sure everything had healed in the sinus cavity, so as not to expose the orbital cavity to any bacteria (I had no orbital floor bone left at that point). I am very happy with the results, though I still have a slight difference (my reconstructed eye is slightly higher and deeper than the other), but no one but me has ever noticed. I did have one complication from the surgery, but only developed last year — I have astigmatism in the reconstructed eye. Small price to pay in my book, since I was dealing with what I consider to be a disfiguring amount of difference between the eyes, and my eye would not close at night. I had my children after the reconstruction, and experienced no additional problems except the usual pregnancy stuffiness and congestion, but it never affected my eye.
Hope this helps!
GG
September 3, 2009 at 1:41 am
Hello, I am not sure which of you to address this to, as I can’t read for very long due to the diplopia I am experiencing from SSS. The sinking in of my left eye became noticable in June 2009, a couple of months after I had my first baby. I self diagnosed myself with SSS back then. After a few long months, and lots of doctor appts, I finally got the true diagnoses of SSS. Obviously, I was disappointed, but at the same time relieved that I do not have cancer or MS, which is what the docs were thinking. Anyway, what I am wondering is if it is okay to fly? My doctor is a fantastic ENT, with fifty years of experience, and a Harvard graduate…and he himself admitted to the fact that I am his first SSS patient. He is in the process of consulting with other doctors and wants to take the best care of me possible. However, he could not answer the question about flying. I have a trip planned to visit family so they can meet my son. I am having to weigh out whether or not it is worth causing more damage. Just wondering about your thoughts on this…?
September 3, 2009 at 2:05 pm
Hi Mandy,
I do not know the answer to your question about the flying.
My friends went on a plane trip about a month & a half after my surgery, but I myself decided against going. That was because I was expecting a long recovery period, but then my recovery ended up being really fast.
I would ask your doctor to be sure. Even if he is unfamiliar with SSS, he might be able to find out easier than we can by consulting with his colleagues or reading up on it. He also might know more about if there are any risks associated with flying with any sinus problem.
September 9, 2009 at 6:51 pm
Thanks for getting back to me about flying. Wondering…did any of you have terrible migraines before you were diagnosed with SSS? Additionally, any problems with your eyes…for example, if the SSS is on the left side, problems with the right eye not tracking things completely and sometimes eyes going a bit crossed when looking off to the side and down? I have the left eye issues, because my SSS is on the left…enlarged orbit, sinking in, drooping, floor collapse, and diplopia. The doc I saw today says there is also a problem with the right eye…
Just wondering how if any of you other folks have had this simlar issue?
September 10, 2009 at 9:29 am
My SSS was on the right side, and my right eye was wide and starting to sink in.. And leading up to that, I kept getting what I called “an offset feeling”. I kept thinking my right eye was blurry, but then if I covered my left eye, I could see fine. It was finally when I was talking to the optometrist about that offset feeling when she pointed out my wide right eye and started me down the path to diagnosis.
But it was a very weird feeling and I didn’t know exactly how to describe it. I haven’t had it since the sinus surgery. I think I was lucky in that I had a very easy recovery after the surgery, and my eye went back to normal after the sinus surgery, so I didn’t have to have the orbital reconstruction surgery.
September 10, 2009 at 9:48 am
Hi Mandy,
I did quite a bit of flying just before I was diagnosed since I was getting married and had to travel back/forth to plan the wedding, then we flew for our honeymoon also. I had a hard time with it, as the pressure changes were painful in my sinus and eye, and the doctors thought it exacerbated my SSS in that I went downhill pretty quickly over this time. I defer to the medical professionals, of course, but in my case I think it made the eye worse.
I didn’t have any problems seeing out of my “bad” eye, or problems with them tracking, but I have had problems recently with astigmatism in the “bad” eye. It started 5 years after my surgeries and the eye doctor isn’t sure if it is a result of the SSS or a complication from surgery. They do think it’s one or the other since it’s only in the bad eye, and most people are born with this and have it in both eyes (I’m told). It’s not bad, and corrected easily with glasses. In my opinion, it’s a small price to pay regardless of the cause, since I had such great results from the reconstruction.
Hope this helps!
GG
September 10, 2009 at 2:01 pm
Hello,
I think there are two Mandy’s. Just to let you know I am the one from Scotland. I have a CT Scan on Tuesday next week, and Sinus surgery in Oct. I will keep everyone posted.
Thanks Mandy (Glasgow, Scotland)
September 16, 2009 at 12:45 am
oops, sorry Mandy I just realized that there are two of us on here. What a coincidence 🙂 I will indicate which Mandy I am in my posts…
Thanks for the heads up
Mandy (Kirkland, WA U.S.)
September 19, 2009 at 3:59 am
Hi All,
I had my CT scan this week, sinus surgery scheduled for Oct 5th. I’ll keep all posted. I’m just wondering if the recovery was difficult for anyone?? As I have a six month year old and I need to be fighting fit!!
Thanks
Mandy (Glasgow, Scotland)
September 22, 2009 at 1:02 pm
Carolyn,
Do you have any contact info on the person
who posted the comment from Memphis ? I was
told yesterday that I have SSS by the Dr. Thane
Duncan here in Memphis. Would like to speak with
them since Dr. Duncan will be doing my surgery
as well. Any help would be appreciated.
September 23, 2009 at 10:29 am
Duncan performed my surgery, exceptional surgeon & very personal from my experience. As noted pre/post surgery, I had no pain literally, unless you physically touched my nose for several days. I did not require pain meds. They did not use the old cloth packing post surgery, gel pack was used & that obviously made a significant difference. Duncan would be my recommendation for this specialty. Wife is a nurse, in-law PT, nehpew family physician.
September 23, 2009 at 3:08 pm
Thanks Bruce,
Would you give me a call at (901)850-5002 I
just scheduled my surgery with Diana at Dr.
Duncans office and have a few questions I would
like to ask you.
Thanks,
Chris
October 5, 2009 at 2:59 pm
Hi,
Just to let you know I had my sinus surgery today. It seemed to have went well. I can notice an improvement with the eye, its still out from the other, but its does look better, and its only been hours.
Carolyn, I know you only had the sinus surgery, I was just wondering if your improvement was instant or if it got better with time? I have my follow up appointment in one month.
My surgeon said to me today that they would not be willing to do any further corrective surgery for 12 months, until everything settles so the corrective surgery is acurate?? Seems a long time to wait.
All feedback is welcome. thanks everyone Mandy (Glasgow, Scotland)
October 5, 2009 at 3:02 pm
Hi Mandy,
Congratulations on making it through the sinus surgery! Glad to hear everything went well and that you’re already seeing an improvement. I only had to wait 8 weeks between my sinus surgery and the orbital reconstruction. I live in the US, so maybe standard wait times are different here? I’d be interested to hear if anyone else had the reconstruction quickly after the sinus surgery like I did.
Thanks,
GG
October 6, 2009 at 6:55 am
Hi Mandy,
There was a small difference in my eye right away after the surgery, but it got better over the next few months.
October 6, 2009 at 7:33 am
Thanks, mines looks almost normal so I think I sit with it for a few months and see, before opting for anymore surgery.
No real pain either, so I don’t think I will bother with anymore pain killers. I have a spray and a cleanser to keep it clean, so just use them i think. I am so glad it looks better. Thanks to all again I will keep you posted on my progress. Mandy
October 6, 2009 at 4:54 pm
My uncle Dave has been seeing misc doctors for a while now and last week had a new one w/ a new idea:
“balloon sinuplasty”
Supposed to open up his nasal passages without the ordeal of traditional sinus surgery.
No idea what the deal is as far as what conditions it works for but it was a new one on me as far as sinus troubles go.
Crazy, man!
peace
October 15, 2009 at 4:17 pm
Hi all,
My eye has improved a little but is still out, I am due back from post opt in about 3 weeks time. My surgeon seems to think I should wait a whole year before having the second surgery, I would like to get it fixed sooner than that to be honest.
Also I have not had much pain post opt, but I have had lot of flem/spit up from the effected side. Just wondering if anyone else has had this, and if it dies down? I have also had a rotten cold which is bad timing, so my nose has had its work cut out for in over the last couple of weeks so to speak.
Anyways, all feedback welcome.
Mandy (Glasgow, Scotland)
October 20, 2009 at 9:14 am
Hi everyone,
I have yet to see an ENT, but am positive that I have SSS. I had diplopia a few years ago, and none of the doctors could figure out why. I never saw an ENT. It never occurred to anyone that I could have a sinus issues.
As soon as I get insurance coverage I am going to see an ENT.
Does anyone have before and after photos from surgery???
Thanks,
Jenny
November 6, 2009 at 2:34 am
Hi Carolyn and everyone,
I was lucky to have gotten a CT scan to rule out a brain tumor for an unrelated hearing problem earlier this year. They didn’t find any brain problems(yay!) BUT they caught what appears to be the early stages of SSS. I was lucky that the ENT had an interest in SSS while he was in med school, apparenttly I was the first real case of it he’d seen– thank goodness he knew what he was looking at! I don’t have the sunken or widened eye (yet) but I do have some strange aches and pains in and around the affected eye socket for the last few days.
Here’s what is frustrating me: After the diagnosis I had surgery to open and drain the maxillary sinus cavity in April, and it seemed to work at first. But after a persistent drainage of darkly colored mucus developed a couple of months later, and after repeated rounds with several different antibiotics had little effect, the doctor ordered up another set of scans. To my chagrin, the sinus on the one side are as full as before the surgery. This is so strange as I still have no sinus pain whatsoever, I am even able to breathe freely through both nostrils. In my case it is truly silent and recurrent sinus syndrome. Tomorrow I find out what the surgeon is going to suggest.
This surgeon is not the ENT that was familiar with SSS in the first place. I don’t think he even knows what SSS is.
I need to find a specialist in Los Angeles that knows what SSS is and how to treat it correctly. Any suggestions where to look?
November 24, 2009 at 6:53 pm
I had surgery for SSS in 2003. Dr. Michel Babajanian in Century City was my surgeon. He was able to relieve my sinus successful. He is an excellent doctor.
December 15, 2009 at 5:01 pm
Dear Caroline, thanks for share your experience.. it’s very helpful for me
December 23, 2009 at 10:45 pm
Hi Everyone,
Thanks for all the useful info and to Carlyn for starting this site. I noticed 4 months ago that my eye was sunken and have been going through the diagnosis process ever since. I actually found this site 3 months ago and figured this is what I had but of course it takes time to prove it. Now I know I have SSS but since I live in Canada the sinus surgery is free but I have to wait 6 months for it. My question is should I pay out of my own pocket to get it done sooner….the doctors don’t seem to know how fast it will progress. Right now there is 2 mm difference in my eye. Has anyone noticed how much more it will move in 6 months. I’m not wealthy but would like avoid inplants or being disfigured for the rest of my life. Any info would be helpful.
Thank you,Jean from Vancouver
February 8, 2010 at 11:28 pm
Thank you so much for this blog!!! I think that I have SSS, but I haven’t actually received the diagnosis yet. I first noticed about a year or so ago that my left eye was starting to appear smaller. Initially, I saw it only in pictures, and then it soon became very noticeable to me (and others) over time. At first, I thought that maybe my eyelid was drooping, and that I may need plastic surgery or something…but, as time I went on, I knew there was a bigger underlying issue. Anyway, most people would tell me that I was losing my mind and that there was nothing wrong with my eye. However, when I ran into an old friend who hadn’t seen me in years, she asked right away, “what’s wrong with your eye?” At that point, I realized that there was truly a problem! So, I made an appointment with an ophthalmologist. He took a ton of measurements and told me to come back in 6 months…no diagnosis…nothing. Well, today was my follow up appointment, and I saw a different ophthalmologist, who said right away (after I showed him my abundance of before and after pics) that I had an Enophthalmos with a ptosis, I also have low pressure in the affected eye (left eye). I asked him what causes such a thing, and he told me a laundry list of causes. However, none really applied to me other than the SSS. I have had chronic sinus issues for sometime, and about a year ago I had some kind of bright (hi-lighter) yellow discharge from my left nostril that was deemed a sinus cyst rupture…in retrospect i’m re-thinking that was the issue now. Anyway, I have been referred to a neuro-ophthalmologist in order to find out the cause of my sunken eye. At this point, I beleive it’s about 2mm, and it has been pretty stable over the last 6 months. However, I hate the way that I look now, and I shy away from taking pictures. I am relatively young (27) and can’t imagine dealing with my “bum eye” for the rest of my life! I hope that there is something that can be done. I used to love my eyes, and now I hate looking at my face in the mirror. I guess I just want to know if there is hope out there.
For anyone who wants to answer:
How long did it take to get a diagnosis of SSS?
Does my story/explanation sound similiar to anyone else’s journey with SSS?
Do the surgeries available actually work to restore the appearance of the eye?
Thanks everyone. I look forward to hearing from you all.
February 9, 2010 at 9:45 am
Hi DK –
So sorry to hear you’ve had to deal with this. It’s a very frustrating condition, and more so when people don’t believe you or understand!
To answer your questions, my diagnosis was fairly quick (about 1 month) because I found some doctors familiar with the condition. I also noticed the difference in my eye through pictures (I had just gotten married and was shocked to see the wedding photos). My SSS was initially caused by a wisdom tooth in the maxillary sinus, causing bone resorption, so I first had to have endoscopic sinus surgery to remove the tooth and the infection. I believe there is usually a sinus surgery done first to remove the infection regardless of cause, otherwise you would have to worry about it happening again after reconstruction.
I had the sinus surgery about 1 month after initial diagnosis, then the orbital reconstruction 2 months later (to allow my facial structures time to stabilize after the sinus surgery). My enophthalmos was very severe (~4 mm) and they said I was about to lose vision in the eye since it was not only sunken, but moving downward in my socket as my orbital floor bone was completely gone. I’m not sure what other surgical options are available, but I have a MedPore implant reconstructing my orbital floor, which is held in place at the temporal bone with a titanium screw. I had the transconjunctival incision (inside the lower eyelid). After the surgery, I still have about 1 mm difference (sunken) between my eyes, and no difference horizontally between them. It’s not noticable to anyone but me, and only if I’m really looking for it.
I have had 2 problems resulting from the surgeries: 1. numbness on the SSS side of my nose and 2. astigmatism in the SSS eye which I wear glasses to correct. Given the state I was in before surgery, to me these are very small prices to pay. I would do it again in a second and I highly recommend both of my doctors (Dr. Marion Couch, ENT; and Dr. Elba Pacheco, ophthalmologist; both at Johns Hopkins in MD). Of note, I also can’t have an MRI since a titanium screw holds the orbital implant in place.
I am now 8 years out from surgery and have had no further problems. I have also flown regularly since then and have no problems with the pressure changes. Please let me know if you have any other questions!
Thanks,
GG
February 9, 2010 at 12:29 pm
Hey DK,
To get a diagnosis I had to see a ear, nose and throat specialist and get a ct scan. The technician who gave the results of the ct scan did not report it. The ENT had to actually review the results himself and then it was pretty clear. Make sure you see the ct scan pictures.
Now in two weeks I have endoscopic sinus surgery booked and they think becuase my eye has only moved 2 mm that it will probably move back without an implant after they clean out the sinus walls. It takes about an hour to do the surgery.
Hopefully if your eye has only moved 2 mm you won’t need the implant either. Hope this helps.
PS….now when people take pictures of me I always turn my head to the side so the camera only sees one eye. It will be nice to get back to normal.
Jean
February 9, 2010 at 2:09 pm
Hi DK,
How long did it take to get a diagnosis of SSS? Mine took several months to diagnose. I had initially blamed it on the Lasik procedure that I had had 6 months prior. You can read my other blog posts for details. I had an MRI to check for Bells Palsy, and eventually I was referred to a neuro-opthomologist who had gone back to the MRI results. However, when I was supposed to have my follow-up appointment, I was informed that neuro-opthomologist had dropped my insurance. I got the medical records from them and went back to my normal doctor. The medical records mentioned “Silent Sinus Syndrome” so I looked it up on the internet. Once I was armed with that information, it was easy to find someone who had heard of it. I still couldn’t get a straight answer on what to do about it, which is why I went to Johns Hopkins.
Do the surgeries available actually work to restore the appearance of the eye? I was lucky in that once they did the sinus surgery, my eye went almost back to normal. I did go for a consultation to have the orbital reconstruction surgery, but decided to wait on that. My surgery was in 2007, and I don’t have any issues with it.
February 11, 2010 at 1:32 pm
After a lengthy time with rather significant eye pain, mostly always at night once I laid down (it feels as if it pressure or significant strain to the backside of my eyeballs) I had a recent CT scan that confirmed SSS. Have an appt with a specialist later in the month. Any thoughts on what I can expect from here would be appreciated. Thank you!
February 11, 2010 at 4:26 pm
Hello Everyone,
First of all, I just wanted to say a geat big thanks to Carolyn for starting this blog. It’s nice to know there is a supportive community out there with first hand knowledge of SSS. With that said, I also wanted to say thank you for your responses. Your input really helped give me some more insight as to what has been going on with my eye. My doctor’s office called today and said that they had set me up with an appointment for next Tuesday to see the neuro-ophthalmologist. So, I have to gather up all of my medical records and hope that he can diagnose me…and send me on my way to the next step. I am really hoping and praying that this whole issue can be resolved soon…I know you all know how I feel:) I will post again on Tuesday after my appointment…hope for the best!
BTW- I am located in Southern California, so Johns Hopkins isn’t really a possibility for me unless I travel
February 17, 2010 at 8:46 pm
Hello SSS Friends,
I wanted to update all of you on what happened at my appointment on Tuesday. The neuro-opthalmologist is pretty much convinced that I have SSS, so he has sent me for a CT scan next week. He also said that since my measurements have been stable, that I probably won’t need the orbital bone surgery. The ball is rolling!
I do have one question though…someone has informed me that sometimes an enopthalmous can be caused by a lung/chest tumor, and that I should have a chest X-ray. Has anyone else heard of this?
Thanks:)
February 20, 2010 at 4:13 pm
Hey DK,
Good to hear the ball is rolling….no pun intended…ha ha
Further to your question about a chest tumour….My opthamologist did bring up that possibility too but said it would be unlikely as I was so healthy and had no other symtoms that would lead her to believe that was the case.
Try not to let people freak you out about the worst possibilities. Good luck with the Ct scan.
PS. I get my endoscopic sinus sergery next week to fix this whole thing….looking forward to my eye moving back to normal position hopefully.
Let us know how your Scan turns out.
Jean from vancouver
February 26, 2010 at 1:18 pm
Hello Everyone,
I am feeling extremely frustrated at this point! I need some advice…for those of you who have been following my thread, you know that I had a CT scan this week to confirm the SSS. Unfortunately, the neuro-opthalmologist said that the scan was normal, and that I don’t have SSS. So, here I am stuck with a sinking eye, and no one can tell me why:( I just want this fixed before it gets any worse. Needless to say…I have been referred to yet another eye specialist. Has anyone else had this much trouble? Should I take my scan to an ENT for a second opinion? Thanks.
March 5, 2010 at 6:46 pm
I just wanted to give my final update incase there are people reading this blog in the future that need some good news. I have had my sinus surgery and it was painless. My eye has already improved 50% and they assure me it may even go back to normal after 3 to 6 months. Wheh!
My advice for anyone from Canada is to pay the $5000 to have the sinus surgery done ASAP insted of waiting 6 months or more. You never know how much worse it could get in 6 months not to mention the worry.
Thanks to everyone who shared their experience on the blog…it’s good to know you’re not alone with all your questions when you discover you have this crazy thing.
March 14, 2010 at 2:57 am
DK – Same is the case with me. Both ENT and neuro optalmologist denies I have SSS; but my eyes are sinking both of them. I am worried and not sure what to do other than pray.
May 5, 2010 at 4:04 pm
Just seeing if this is going to work before i add
May 5, 2010 at 4:14 pm
okay great it works!
Hi everyone,
I am so so so happy that i stumbled across this blog after hours and hours of web searching and pondering on what kind of terrible disease i may have!
It seems that the condition i have been suffering sounds like SSS. I would love someones opinion on my story…. About 18 months ago i noticed that my left eye seemes sunken like. No one else believed me and thought i was being vain. Then my best friend came to visit and she noticed. And then i started noticing more in photos. My left eye seemed wider and more sunken then my right. Like there was more eyelid on the left side. It didnt cover my eye ball but was more eyelid sunken back, if you get me.
I went to the doc and we ruled out brain tumor etc. Then the eye doctor ruled out anything actually wrong with the eye. So then i was at a loss. He told me it was just a lazy eye and it would improve. Yeah right!!! Being 27 years old i just couldnt accpet that! I have been struggling to look in the mirror and end uo in tears nearly every day!
Anyway i was referred to an ENT who got the Ct scans done. They show up a deviation in my septum towards the left which is causing chronic sinustitis as the infection can’t escape. He never mentioned SSS though? He did mention that this would be causing me eye problem though as it may pinch the nerves around the eye. I read that someone else also has the symptom that in the morning the eye looks identical to the other but by lunch time i was back to having a ‘bung eye’!! So glad to hear i am not crazy. But wow the having this condition has made me so self consious and unhappy on so many levels.
I am due to have sinus surgery next month. The ENT is also going to correct the deviation. Does anyone know if the sinus surgery will fix my sunken eye?? SHould i mention SSS to the surgeon in my pre appointment??
Thank you so so so so much for all of the help everyone…i feel So much better already….
May 5, 2010 at 4:37 pm
Oh and i forgot to mention….the headaches behind and around my eye are constant…i also feel as though my eye is being ‘pinched’ most days…it’s so annoying and starting to affect day to day life!HELP!
May 6, 2010 at 9:54 am
Hi Jill,
Totally get how you are feeling. I too have SSS, it started around June last year after my first baby, mines is the right eye. Same thing, sunken, appears diiferent in photo’s. Not everyone notices, but to you, me, it really really gets to you.
I had the Sinus surgery in Oct 2010, there is an improvement, but it still not quite right. The surgery itself was easy enough, so nothing to be afraid of. My surgeon is great. I am now post opps, and have regular appointments at the ENT to check the progress. I am going to go on and have the orbital floor restruction work, but my surgeon, has sugguested that I wait 12 months encase the eye continues to improve on it own, so the next surgery is as accurate as possible. To be honest, the improvement I seen after the first operation was instant, and nothing has changed since. However I have opted to wait the 12 months, and I am due back in January 2011. I absolutely will get the second surgery, in between I am having baby number two…so i could have pushed the surgeon to carry the work out before the 12 months, but thought I have another baby instead…..
Good luck with the sinus surgery, some folks say sinus surgery was all the needed. For me I need two lots. Fingers crossed for you.
Mandy (Glasgow, Scotland)
May 6, 2010 at 10:22 am
Hey Jill,
I have some good news about the SSS, After my sinus surgery my eye is almost back to normal and it’s only been 2 months since surgery. I won’t need the orbital floor reconstruction.
I can totally relate to what you are feeling. It took some work to convince the doctors that something was wrong….I had to bring in still photos so they could see it because in person in wasn’t obvious. Then you have to wait for them to figure it out when in your gut you know what it is after you find this blog. It was always worse at the end of the day as opposed to morning and I always worried about how much worse it was getting. It’s not as rare as the internet says. My doctor in Vancouver, Canada has done at leaset 100 surgeries over the years to correct this for people.
Follow your instints and get a second opinion if you need to.
Good Luck,
Jean ( Vancouver, Canada )
July 17, 2010 at 10:31 am
I have been recently diagnosed with SSS (july 2010) and would like to know if anyone here has had like spasm in the muscles around the face (in the sinus areas) while having SSS.
I am hoping to undergo surgery soon. Thanks so much everyone for their posts since it has giving me hope that there is treatment for this.
July 18, 2010 at 12:42 pm
I don’t recall ever having any muscle spasms in my face when I had Silent Sinus Syndrome.
July 19, 2010 at 2:18 pm
Does anyone know if this condition can cause migraines? I have been suffering from them for about ten years. My Doc sent me for a CT scan, she told me my eye was enlarged and there was a problem with my sinus on that same side, but it was nothing to worry about, and sent me to a neurologist for the migraines. After several different meds failed to help he finally gave in to my request for a MRI. The results came back possible SSS, again I was told this was nothing to be worry about and did not cause headaches. I am completely confused, please help.
July 19, 2010 at 2:25 pm
Hi Katrina,
I do not know if the SSS are causing your migraines, but I did not get migraines when I had SSS. The only symptoms I had was the wide eye.
Thanks.
August 18, 2010 at 5:38 am
Hi Katrina,
I suffered migraines for 2 yrs previously. Docs found that my entire left sinusus were blocked along with a deviated septum which blocked draining. Its been nearly 6 weeks since tthe op and i have had only 2 migraines. Previously i was having 3-4 a week. Persist. See an ENT and get a scan on all your sinus. Good luck! Its so fustrating!
July 19, 2010 at 2:35 pm
Katrina,
I never had any Migranes either….just the sunken eye.
Godd luck,
Jean
August 2, 2010 at 9:45 pm
I was diagnosed with SSS way back in 2002, and I’ll share my experience about that in a minute, but I’m wondering if anyone had a Caldwell Luc procedure to resolve their sinus issue and if they’ve experienced pronounced drainage in the years that followed.
Here are the details of my surgery, which seem to differ from many others. After reading so many examples of lengthy diagnoses, I’m grateful that just three months passed between my first doctor’s appointment and my surgery. I had no serious sinus issues before my first appointment with a young general practitioner at Group Health Cooperative in Seattle. My only symptom was a sunken right eye (enophthalmos), which seemed to have occurred quite suddenly (perhaps over a month or so) with no warning. The young doctor was somewhat incredulous that I hadn’t suffered some kind of eye trauma in the past, but he was dedicated enough to do everything necessary to determine the cause. I say this because so many people disparage managed care, but the care and talented medical team I encountered at Group Health Cooperative would rival any private, endowed hospital. And other than $10 copays for numerous visits, my entire surgical bill was $100 (I’m sure my care totalled in the 10s of thousands).
The initial CT scan revealed negative pressure in my right sinus. The left side had a black pocket in the maxillary sinus/cheek area while the right side had none–it was clear as day to even me. The orbit reconstruction was presented to me not as wholly cosmetic, but also as a preventative measure to avoid possible double vision (although one of the surgical risks was double vision).
Two specialists performed a double surgery–an opthalmologist Dr Man Kim reconstructed my orbit, and an otolaryngologist Dr David Mehlum took care of the sinus via a Caldwell Luc procedure (=entering the sinus through the mouth by way of an incision into the canine fossa above a canine tooth, cleaning the sinus, and creating a new and enlarged opening for drainage through the nose).
The procedure consisted of three incisions–for the Caldwell Luc, one in my inner nose and one in my upper mouth, and one on my outer right eye. The initial plan was to take bone from my cheek to build up the orbit in order to avoid using non-organic material (titanium, screws, etc). They couldn’t get enough bone, so they had to use some non-organic material to rebuild the orbit, but it wasn’t titanium and no screws were used.
While I had no complications from the surgery, my recovery was definitely more challenging than many others have reported. First, lots of swelling around the eye. It took about a week for the swelling to go down enough that my eyes were realigned and I could see normally (I had 20/20 vision prior, and I still have 20/20 vision 8 years later). When the swelling went down, I no longer had a sunken eye, and it still looks great 8 years later. The sinus part was very uncomfortable because I had a rather substantial ball of latex string inside my newly rebuilt sinus cavity for about three or four days. The doctor removed it through my nostril–I will never forget that. I think the Caldwell Luc caused the most lasting effects in that it took several months before I could feel my upper right lip, several more before I could feel my right cheek near my nose. I still have feel different sensations on that side of my face–again, mostly around my upper lip and nose/cheek, especially in hot or cold weather. My face throbs every so often. While I rarely have nasal congestion, I experience quite a lot of drainage, which is why I found this blog because I want to know if others have had similar drainage issues and what they’ve done about it.
August 18, 2010 at 10:46 am
Thanks for the advice, I actually did have a CT, two in fact. And a MRI that suggested in the findings I a follow up for SSS, all my doc did was up my meds. Not really sure if I need to push the subject or just let it be.
August 19, 2010 at 9:14 pm
I have just been diagnosed with SSS today. I went to an ophthalmologist I guess around April with the chief complaint being that my left eye is sinking in. He sent me to do an MRI which showed that my left eye was posterior to the right. He then referred me to a neuro-ophthalmologist which requested a CT scan and the results showed SSS. I am thankful that I got diagnosed relatively quick compared to some stories I have read on this site. I am very nervous about surgery. I will hopefully have my appointment for the ENT tomorrow. I have no clue of what doctor would be best for this. Any one having any information for a doctor in Louisiana that specializes in this would be great.
September 1, 2010 at 9:40 am
Hi Again,
Its Mandy from Scotland, I first wrote last year when I discovered I have SSS too. I got lots of great advise, and here I am again looking for more of the same.
I underwent the Sinus Surgery, which stopped the eye sinking further. A year on, and another pregnancy under my belt, I revised my surgeon yesterday regarding the follow up, and next steps. Basically my eye is still about 2mm sunken back, not so much down. My surgeon thinks because its just slightly out, I shouldn’t have the orbital floor surgery, in fact he said I would regret it? I know the eye is only slight out, but I notice it. And I am up for getting the next stage of surgery. Can I ask those who have had the orbital floor reconstruction work, did your eye look normal afterwards? Was there still a difference in mm? and where there any complications. My surgeon said I risk having pain in the eye for the rest of my life…..
Also anyone in the UK can recommend a surgeon who has done this work, as I suspect mines isn’t that confident in carrying out the procedure, so i would rather see if I can source a surgeon who is confident in the procedure. I am due to see surgeon again in Feb, as my second baby will be born next week, and I will be feeding until that time, so plenty of time to mull this over. I was disappointed when I left my appointment yesterday.
I think I will post some picture’s too for feedback.
thanks and I look forward to hearing from you good folks.
Mandy
September 26, 2010 at 2:20 pm
Hi, Mandy. I had the orbital floor reconstruction. There were no complications and my eye looked and still looks normal 8 years later. I haven’t experienced any pain, but the area is sensitive to extreme heat and cold (temps above 95 degrees F, below 0 degrees F). Every so often I get a throbbing sensation, which has dissipated over the years. I can’t prove this, but I credit my relatively good experience to the choice of materials that my doctor used to reconstruct the orbit. I don’t know exactly what he used, but I’m sure he’d be willing to consult with any doctor: Man Kim http://www.ghc.org/controller/providerDirectory/practitionerDetail?forwardUrl_success=%2Fcommon%2Fapplications%2FproviderDirectory%2Fprovider-detail.jhtml&practitionerNumber=2865&careSiteId=491&cardTypeId=1&cardTypeName=Group+Health&cardTypeInfo=1%7CGroup+Health&providerNetworkId=2.
That said, it’s pretty major surgery and with any surgery there are risks. I had the sinus surgery at the same time, which caused a lot of the discomfort, but for the eye part, the swelling was quite pronounced initially, especially in the first week, so I didn’t have my normal vision back right away. The doctor told me beforehand that swelling was expected, so I didn’t freak out too much, but I did wonder if my eye would ever look get back to its normal position. Followup also required putting a dab of gel near the incision at the outer corner of my eye to avoid infection (which worked, no infection). And this is very minor, but I couldn’t wear eyeliner for a month or so because I had to avoid any pulling in the eye area. My eye didn’t look totally normal until about 6 weeks later. I do sometimes wonder how much (if at all) the sunken area under my eye would have filled back in with just the sinus reconstruction. Still, I’m very pleased with the results.
September 1, 2010 at 9:52 am
Hi
I first wrote a year ago when I was told the reason for my sunken eye was SSS. I got some great advise and here I am looking for more.
Basically I went back to see my surgeon who performance my sinus surgery in Oct 09 for a check up. The wanted me to wait a year to see if there was any further movement before discussing next steps.
My eye is still about 2mm sunken back, not down. My surgeon, think because its just slight out (to him), i should not have orbital floor work done. I got to say I was disappointed. He has said that I can get a second opinion which I will. He said that if I had the surgery, there wouldn’t be much further improvement, and that I could regret for the rest of my life, as it could cause my pain forever. This complete contradicts most of the comments posted. I am slightly concerned that he not that confident in carrying out the procedure. Two things I would like advise on for those who have had the reconstruction work. Did it improve the eye to a normal state, or is your eye still out? and by how much? Secondly, anyone with complications that cause great pain??
I will post some pictures to see what people think, I also would be interest in seeing some before and after slots of those who have had the work carried out. These can be sent to my private email address, as I know sometimes we can be funny about pictures. My email is barnett_99@hotmail.com.
Last but not least, anyone know a surgeon in the UK they can recommend for the job?
Thanks and I looking forward to hearing from you good folks.
September 24, 2010 at 3:13 am
Folks,
Just wondering if anyone has any feedback on post 101??? Posted it up at the beginning of the month with no responses:O(
September 24, 2010 at 10:23 am
Hi Mandy,
I am sorry I didn’t respond to your post. I didn’t have the orbital reconstruction surgery myself, so I don’t have any expertise to share.
I did have the consultation for the orbital reconstruction surgery a couple of months after my sinus surgery, but at the time, I had already noticed my eye wasn’t looking as sunken, and so I decided not to get the orbital reconstruction surgery. There were more risks involved with that surgery than with the sinus surgery (I remember blindness was one of them), and so even though they were small risks, I decided they were enough to cause me to decide not to have the surgery.
At the time, I was thinking I would just hold off on the surgery and see if my eye continued to get better or if it got worse. And as it turned out, my eye got better. It’s not 100% perfect when I look at myself in the mirror, but I don’t think anyone can tell.
I happen to have some some recent pictures of myself close-up, so you can see how my eyes look as of 5/18/2010.
For a reference, here is what my eye looked like in 7/2006, which was before I got the sinus surgery:
September 29, 2010 at 10:27 am
Hi,
I’d like to thank you Carolyn for posting your experience with SSS. It’s been truly helpful!
I think I have SSS. It started a few months ago. I noticed that my left orbital bone seemed to be getting in the way of my eyelash curler. It’s crazy that I didn’t get concerned over this, but I didn’t. I thought it was the eyelash curler’s pad being old and compressed. Then in early August I experienced extreme dryness in the same eye. I went to my opthamologist who said I had inflammation in the tear ducts and to use warm compresses and baby shampoo to remove my eye makeup with eyedrops as needed. This helped the dry eye and I felt better. In retrospect, the dryness was probably caused by the eyelid not fully closing, especially while sleeping. The Friday night of Labor Day weekend I noticed that my left eyelid had lost its eyelid crease and I could see back under the orbital bone. Of course, I was distressed and had to wait through the long weekend wondering what was going on. I went to my opthamologist early the next week who measured my eyes and then referred me to a neuro-opthamologist. I had to wait a week for that appointment, even though my opthamologist said sunken eye could be caused by breast cancer. In the meantime, I went to my primary and had a a thyroid test as thyroid disease is rampant in my family. The thyroid test came back in the normal range.
The neuro-opthamologist appointment felt good in the moment. He did not see sunkeness, but I don’t think his technician measured for downward displacement. He said I had dehiscence of the levator muscle, in other words, droopy eyelid, but the muscle was still strong. He looked through several photos I brought with me and said he could see that the eyelid had been changing since January. At some point, I would need a simply surgery to pull the eyelid up. He did not order an MRI or CT to ensure there are no underlying issues. In retrospect, I think he thought I was a hypochondriac dwelling on thyroid disease. He made the comment that everyone is asymmetrical and that I “either would end up with thyroid disease or end up giving it to myself.” Not a great bedside manner! At the time, I had not heard of SSS, so I did not bring it up to the opthamologist, neuro-opthamoligist or my primary doctor.
Now two weeks later, I’m convinced there’s more happening than eyelid muscle detachment. My left eye looks wider vertically than the right eye and slightly lower in the face. You can only really see this if looking into my face from a downward angle, but it is definitely there. From what I’ve read on the internet, the eyelid shape and lower displacement, including the loss of bottom orbital fat are all indicators of SSS.
Carolyn, did you refer yourself to Johns Hopkins Sinus Center? And if so, did you need a possible diagnosis from another doctor to get that appointment? I do have an appointment with an ENT in a couple of days.
If anyone else lives in the area, I’d appreciate your input on doctors familiar with SSS, too.
Thanks again for your blog!
NKM
September 29, 2010 at 10:44 am
Hi NKM,
I did refer myself to Johns Hopkins. I went to several doctors before then and I was getting a different answer from every doctor I went to, and my father suggested I go to Johns Hopkins since they are experts.
I gave Johns Hopkins all my medical records from all the doctors – ENTs, neurologists, retina people, opthamologists, and the neuro-opthamologist… They did give me another CT Scan because they wanted to check what was behind the eye more to determine if I needed a biopsy. Nothing ever came of that, so I guess I didn’t need one.
One of the ENT’s I went to had never heard of Silent Sinus Syndrome, so he wasn’t very helpful. I would suggest asking the doctor about SSS when you go to your ENT appointment. If he doesn’t know what it is, I’d go to another doctor that does.
September 29, 2010 at 2:16 pm
I also had my SSS taken care of at Johns Hopkins. I saw Dr. Marion Couch for the sinus surgery (my SSS was caused by a wisdom tooth in the maxillary sinus causing chronic infection — see earlier posts in this site for more details if you want). I then had the orbital reconstruction with Dr. Elba Pacheco at Johns Hopkins Wilmer Eye Center and she was incredible! Very knowledgeable about SSS and reconstructed my orbit with very little noticeable difference now. I’m not 8+ years out from surgery in 2002. I made the appts with both doctors and was very happy with all of their knowledge, manner, and treatments.
December 16, 2010 at 10:07 pm
Hi –
My SSS came on suddenly. Within a month my eye was 3.5mm down and not sure how much back. I had the sinus surgery to correct the problem and my eye improved slightly. My ENT said don’t bother with the cosmetic stuff because its not that bad. But an oculplastic doctor told me to get the orbital floor implant. My eye is more in then down and the eyeball is tilted. My eyeball cannot look up very well and if I’m not careful and the eye sinks further, I could develop double vision or eyesight problems. As it is, he put his finger above my head and told me to look up. My ‘bad’ eye could not see his finger. I am really nervous of the risks associate with orbital floor implant but am leaning more and more toward it. I’ve read through all your posts and those of you who’ve had it seem okay. So that is reassuring.
Also, I had a baby and I really think my SSS was prompted by that. The sinking of my eye happened shortly after the baby.
December 17, 2010 at 3:53 am
Hi Deana,
I too have SSS, so far I have just had the sinus surgery, but I want to go on and have the orbital floor work, as the eye is still out by 2MM. My Surgery also has tried to put me off, but after speaking to the folk on this blogg, I decided I do want to proceed with the orbital floor work. I am due back in Feb, to discuss and get a second opinion. I’ll keep everyone posted.
The reason for the delay in further operation is I had my second baby September this year. Funny enough I had SSS with my first baby too.
it
Keep us posted and good luck. I think the eyes see into the soul, I think thats why I want mine fixed.
Mandy Glasgow, Scotland
December 30, 2010 at 4:25 pm
Good luck!!
December 31, 2010 at 12:25 am
Good luck with your surgery :). Please let us know how it goes.
I’m curious what the sinus surgery was like for others and what was involved. I have a feeling that mine was somewhat unusual because it included a Caldwell Luc procedure (incision in the interior mouth above the gumline) as well as a big string of latex in the sinus cavity for a few days.
December 31, 2010 at 9:50 am
Good luck and let us know how it goes. Yes the pregnancy thing seem to be developing a theme. M x
December 31, 2010 at 1:49 pm
Yeah, Dr. Lane was great. I recommend him.
Mine happened pretty fast, too.
January 1, 2011 at 12:03 pm
I don’t remember if they packed my sinuses or not…
I did have to go back for weekly follow up visits for about 3-4 weeks. They didn’t clean them out, but he stuck the camera up there to check how it was healing.
I was there all day. I think my surgery was at noon, but I think we showed up at 10am. I think I was there until 5pm or so… maybe it was only 4pm and I got home at 5pm. I’m not sure.
I did have to take antibiotics and steroids. I forget which antibiotic it was, but it affected my “good bacteria” so I ended up with annoying digestive issues that lasted a couple of weeks. I had to get medicine for that.
But I was not in any pain for my sinuses. I didn’t even need the pain pills I was prescribed. And I didn’t even use ibuprofen. The only pain I felt was in my throat from the breathing tube. That only lasted a couple of hours after I woke up from the surgery.
Good luck!
January 2, 2011 at 2:44 pm
[…] Silent Sinus Syndrome – My journey July 2007 126 comments 3 […]
January 9, 2011 at 3:49 pm
Hi,
Re: how quickly to see results….I saw about 30% improvement in the first week….and maybe another 60% over the course of the full year….little by little every day. I am almost at the one year mark and I’d say it’s about 90% back to normal.
Be patient…it will improve! 🙂
Jean
January 27, 2011 at 10:39 am
Hi – can anyone please tell me if you had a swollen eyelid with this syndrome? I have one eyelid (top lid) that is swollen (gets progressively worse throughout the day but resolves itself in the morning). My doctor said that enopthalmos does not cause swelling in the eyelid. Thanks.
January 27, 2011 at 3:39 pm
No SSS here, but regarding the swollen eyelid, you may want to consult a doctor about allergies. Try Zyrtec, as it really seems to help.
January 27, 2011 at 4:41 pm
Hi – I have been told it is allergies but I feel it is SSS because my eye seems set back and I’m wondering if eyelid swelling is a sign of enophtalmos particularly with people who have SSS. thanks 🙂
January 28, 2011 at 6:40 pm
Hi – did anyone who had SSS have any swelling in their eyelid? Thanks.
January 28, 2011 at 8:10 pm
Hi Debbie,
I don’t recall any swelling in my eyelid. My eyelid did have some drooping and looked strange, but I don’t think it was actually swollen. Sorry I couldn’t be of more help.
January 28, 2011 at 9:29 pm
Thanks, Carolyn. I appreciate your response.
January 30, 2011 at 5:20 pm
I didn’t have any eyelid swelling either. Sorry.
January 30, 2011 at 7:13 pm
Thanks for your reply, Linda!
January 31, 2011 at 7:50 am
Me either Debbie, just the sunken eye, no pain or any other sign
February 2, 2011 at 7:19 pm
Thanks, for your reply, Mandy. It’s so frustrating as my eyelid has been swollen for about 1 year and my eye looks sunken in to me – not sure what it is and opthalmologist felt it could be allergy or sinus related.
January 31, 2011 at 7:53 am
Peeps,
Just an update: I have my appointment tomorrow with my surgeon to discuss the reconstruction of the orbital floor, he so against it, as he says is minor. I waiting nearly 18 months, since the first operation. I really want to proceed to push the eye back into place.
Wish me luck.
Mandy Scotand
February 1, 2011 at 11:07 pm
I am a 42 year old man. It is clear that I have SSS. I abused cocaine for a few years in my late 30’s and even spent a few months snorting crushed up pain killers. It was shortly after quitting this drug use that I noticed the lower right eye. Am I the only former drug snorter on this site- because I can’t help but blame this on my myself
February 3, 2011 at 5:06 am
I sometimes (well, rarely) wonder what caused my SSS–was it too much air travel or too many trips to the mountains (those are total guesses)? I’ll never know and there’s nothing to be gained from blaming myself.
SSS is rare and even with lots of cases, it’s very difficult to establish causation. I don’t recall my doctors telling me that I was at a higher risk to develop SSS on the other side of my face nor did they recommend that I change any of my behaviors such as flying less or avoiding high altitudes.
Perhaps others on the list had doctors who tried to pinpoint the cause or recommended preventative measures. My team of doctors didn’t; they instead focused on treatment.
February 3, 2011 at 9:50 am
When I had my MRI and CT Scans, the medical personnel kept mentioning that I had an underdeveloped bone structure in the right side of my face, along with there being something in my sinus. So I figured that had something to do with it.
And all the problems I have are on my right side – I also have TMJ and narrow ear canals. My right ear is constantly clogging up with wax. My left ear clogs too, but mostly it is the right ear that bothers me.
With the TMJ, the right side of my jaw cracks. I blame that on getting whiplash in 1996.
February 4, 2011 at 11:27 am
Does anyone with SSS have discomfort in their eye (not talking about sinus pressure or pain) just an uncomfortable feeling? Any discharge from the eye that is sunken in?
February 4, 2011 at 11:33 am
I didn’t have discomfort, but I had a weird feeling that I described as “offset feeling” for a little while before I noticed the wide eye.
I mentioned it in this post.
https://carolyncasl.wordpress.com/2006/05/12/wide-eye/
Anyway, I didn’t have any discharge from the eye either.
February 4, 2011 at 11:47 am
Hey Debbie,
I did notice my sunken eye was a little dry,scratchy, weepy and uncomfortable towards the end of the day. The opthamalogyst thought it was probably because it wasn’t closing all the way when I blinked. As it sunk it took greater effort for the lid to cover it…..I think it stayed open a crack at night when I slept too.
But just as a side note to everyone visiting this sight….it has been one year now since my sinus surgery and my eye is 90% normal 🙂 I do not need the reconstruction of the orbital floor. I highly recommend Dr Javer in Vancouver, Canada if anyone needs a reference.
February 22, 2011 at 1:49 pm
I’m just curious as to why an eye that is sunk in would appear wider? I would think that the sunken eye would be smaller as it sits further back in the orbit? I know I’ve asked about eyelid swelling- I would imagine that with a sunken eye, the eyelid comes down further from the eyebrow down to the lashes.
February 22, 2011 at 4:36 pm
Hi Debbie,
For my eye, it wasn’t sinking back into my head, it was sinking lower into the floor of my cheekbone. It was appearing wider because my eyelid wasn’t covering as much of the eyeball as it normally would.
It was especially pronounced when I was looking down.
February 24, 2011 at 11:54 am
Hi –
I just had the orbital floor implant surgery yesterday to correct my eye back to its normal position. So far the surgery seems to have gone well. I had pain yesterday, the 1st day, but not much today. My eye is swollen though and I look like Rocky Balboa. I will keep you all posted on my progress. Vision is good and double vision is gone.
March 24, 2011 at 4:08 pm
Hi Deana,
Just wondering how the eye is looking, I have an appointment with a plastic surgeon to discuss orbital floor correction, and just wondering if you would recommend it or not.
My eye is about 2MM out, back mostly.
How much was yours out, and how is it looking??
thanks Mandy (Scotland)
March 24, 2011 at 4:12 pm
Hi Mandy,
My eye was 3mm down and 2mm sunken in. Its looking a lot better. The eye is pushed back up and out. Its still not perfect though, its not how my eye used to be before all of this started. There is still un evenness and the eyelid does tend to look swollen/droopy from time to time. I’m still healing but I have a feeling this is how it will be. I am okay with this though. Its still slightly ‘off’ but much better then it was before the surgery. Good luck to you and let me know if you more questions as you make your decision.
March 25, 2011 at 3:16 pm
Thanks, my appointment is on 27 of April so I’ll see what they say before making my decision.
I wish you a speedy recovery.
I will let you know how I get on. Mx
February 24, 2011 at 11:56 am
Hi – after the surgery people told me my eye looked better as well. And it did look a bit better to me. But the actual measurements showed the eye was still at the same position as before the surgery. I waited 6 months and just had the orbital floor surgery yesterday. It seems fine so far, but my eye is too swollen to know the true results. Eyeballs are aligned though.
February 10, 2012 at 10:48 pm
Just wanted to post an update here. My sinus closed up again and is pulling my eye inward. The eyeball is held in place with the implant, but the area around my eye is looking sunken in again. I’m going for another surgery to open up my sinus again. Has anyone else had this happen? I wonder if this will be an ongoing issue for me.
February 11, 2012 at 12:38 pm
I am sorry to hear that your sinus is blocking up again. Mine hasn’t recurred as far as I am aware. My right eye doesn’t look exactly the same as the left, but it is not obviously wider. I hope the second surgery helps.
March 22, 2011 at 9:57 am
Did you have any swelling in your cheek or other signs of nasal obstruction (breathing problems/pain)with the SSS? Was there any change in your eye shape (eyelid)/feel as you went through the day?
March 22, 2011 at 10:11 am
Hi Debbie,
I did not have any swelling in my cheeks. The only symptom I had was the wide eye.
My eye would get wider over the day. So in the mornings, it wasn’t as bad, but then as the day went on, it would get worse.
Before my eye got wide, I was sometimes getting this weird “offset” feeling. It was really hard to describe, and even now, I can remember what it was like, but not how to describe it. I just kept thinking my right eye wasn’t seeing as well, but when I would close my left eye, the vision wasn’t blurry. Then a few months later, we noticed the wide eye. I haven’t gotten the offset feeling since the sinus surgery.
March 22, 2011 at 12:04 pm
Thanks Carolyn. Why do you think your eye got worse (wider) as the day went on? It appears that having a wide right eye was your only symptom? I’m surprised you didn’t have any pressure or change in structure of your cheek on that side.
March 22, 2011 at 12:23 pm
I was never sure about why it would get wider throughout the day. I never confirmed with my doctor or anything. I may have mentioned it to them, but I don’t know if they specifically said the reason for it.
I thought it might be stress and tiredness.
October 25, 2011 at 5:02 pm
It gets worse throught the day because in the morning the muscles are able to compensate, but by the end of the day the muscles are too tired. Also there is fluid retention in the morning as well which may help.
March 22, 2011 at 12:46 pm
Hey Debbie and Carolyn,
I was just reading your posts this morning and wanted to say I had the exact same symtoms as Carolyn ( thank goodness for this blog, otherwise I would have thought I had a brain tumor). No pain and no swelling but the wide eye would get wider throughout the day. It was because in the morning your face and body retain more water so the sunken eye doesn’t apear as sunken.In the evening it was the most pronounced. Hope this helps,
Jean
March 23, 2011 at 1:37 pm
Jean, did you have any kind of funny feeling in your cheek (as if your eye were sinking in) and did others notice the difference in your appearance. I ask because I have one eye that is constantly swollen (upper eyelid only) and my eye appears sunk in and lower (I have no fat under this eye) – my doctor keeps saying allergies – my eye also feels like it is sunk into my cheek or that my cheek is a bit swollen.
March 23, 2011 at 2:15 pm
Hey Debbie…no my cheek didn’t feel weird or swollen and my eyelid was normal. My family did notice my eye looked different from the other one but most other people didn’t see it right away. It was very clear something was wrong when I took photos of my face…in fact that’s how I had to convince my family doctor to send me to an opthamologyst.Be persistent if you know something is wrong! Good luck 🙂
March 24, 2011 at 7:01 pm
Thanks for your replies. I am going to look further into my eye issue. I have had a swollen eyelid for about 1 year now and am being told it is just an allergy to something (allergy testing has indicated several allergens). I do not have other “normal” allergy symptoms though (congestion, sneezing, etc.) aside from the eyelid swelling and occasional eye itch. My eye looks sunken in to me and I want to further investigate. I’m just wondering if any of you were frightened to get your diagnosis as I am nervous to find out what it could be but equally upset that I have a swollen eye for all of this time.
March 28, 2011 at 10:02 am
Hi there! I had both the sinus surgery and orbital reconstruction (with MedPor, not a plate). I also had no change in my eye after the sinus surgery. I had great results with the orbital reconstruction and now only I can see a difference in my eyes — it’s still slightly higher and sunken, but NOTHING compared to how I started.Happy to answers any questions you might have.
On the second point, I get many sinus infections (before and after surgeries) and it usually leads to changes in how my eye feels. I think it’s due to the pressure changes with the infection and draining. I usually take Mucinex or another mucolytic to keep the sinus draining as much as possible. You should check with your dr since the surgery was so recent. I also had one time where the infection moved from my sinus into my eye as conjunctivitis and it took a ton of antibiotics to get rid of at that point. I’d call my dr since he may want to be aggressive since your surgery is recent, and if you have less bone between your orbit and sinus, he/she might want to prevent it spreading.
March 28, 2011 at 10:02 am
Every so often, I feel pressure in my sinuses, but I have never been prone to sinus infections. You should probably call your doctor.
March 28, 2011 at 10:04 am
Hi –
Yes, I had a sinus infection after my sinus surgery. My ENT actually called it an upper res infection. We repeated the CT Scan just to make sure everything was fine, and it was. I got tons more sinus pressure now then I ever did. And, after my orbital implant surgery the sinus pressure was even worse due to the inflamation around the eye. My eye looks much better after the implant surgery, but not back to normal. It will probably never be normal again, but I don’t feel so self conscious of it now.
April 4, 2011 at 2:08 am
Hi everyone,
Carolyn – thank you so much for this blog.
I had surgery for SSS on Friday (it’s now three days on) and can’t help marvelling over the differences between procedures down here in Australia, where I live, and the US, UK and Canada. In particular, my doctor told me that to conduct sinus surgery through an incision in the gum is very old-school and never done here anymore – with me, they just went in through my nose, which of course was minimal pain and discomfort (just horrible not being able to breathe through nose for first few days of recovery). So I would suggest seeking out a surgeon who has the most up-to-date info & techniques, because the other old-fashioned methods sound so much more horrific and difficult to recover from. Don’t let anyone go in through your gum!
They also don’t use any nasal ‘packing’ here; I’ve simply had a gauze bandage under my nose for a few days to cope with post-op bleeding, but it’s only day 3 and I can do without. It seems to be healing quickly, although I’ve arranged for the week off work as am not a pretty sight!
Re my eye – that’s the only thing I’m very nervous about. It was a few mls “sunken in” and, to be honest, my main reason for surgery as it had far more psychological impact on me than my congested sinuses. It’s day 3 post-surgery and no immediate difference – in fact, it looks worse than it’s been. Hoping very much that it will improve, but am freaking out in case it doesn’t. My doctor said I need to be patient and that, in the majority of his patients, the eye has resolved itself once the negative sinus pressure is gone. But need to give it a few months. However, it does seem as though some of you have noticed an improvement straight away so can’t help being anxious! Will keep you updated on whether it improves by itself.
Thanks again Carolyn for this great forum.
April 5, 2011 at 9:01 pm
You poor thing, @dartclancy – if your eye is causing double vision than perhaps it won’t correct by itself, no. I will definitely have the implant if I need to, but will now need to give it a year as there’s a waiting period for my private health insurance (it wouldn’t cover me for the sinus surgery, which ended up costing $6k here in Australia!). So upsetting.
I asked my doctor if I would need to have it done on the other side and he said no, it doesn’t mean it will ‘spread’ to there (he is an expert in the field, having cowritten one of the first papers on silent sinus syndrome in Australia in the 80s and performing the surgery many times a week). He also said it’s unlikely I’ll need to have it done again on the affected side – he has “trimmed the turbinates” (opened the pathways) so it shouldn’t get congested again.
Apart from the eye being the same/worse five days on, it really was a relatively simple procedure – I could have gone back to work on day four, I think, if anyone is looking for guidance about that.
Take care all. And yes, I’d be happy to post pictures. Perhaps in a separate gallery, if Carolyn is keen?
Cheers
Lisa
April 19, 2011 at 6:30 pm
Hi guys, well, after all my hystrionics, the eye is definitely looking better after just two weeks. It looked worse for a work and then slowly, steadily began to improve. The doctor said it will literally take months, but he believes my eye is going to make a full recovery. I am one of the lucky ones. It already feels different, has lost the ‘tugging’ sensation and rather than a one-hour window after I wake up before it starts to sink in, it’s now okay until about eight o’clock at night. I am sooo relieved. Keep you posted! Thanks for your concern.
June 23, 2011 at 6:02 am
Hi Lisa, Just wondering how you are eye is settling? I am considering surgery so looking for some feedback on the afterwards healing experience, and how you dealt with the recovery. I am very keen to see some pictures, and I think they speak better than words.
Speak soon I hope,
Mandy (Scotland)
June 26, 2011 at 2:02 am
Hi Mandy, my eye is doing well – thanks! Two months post surgery. It is not quite there yet – or perhaps this is as good as it gets – but the doctor said it really would take up to a year, and that it should continue to improve still more from here. I can live with it the way it is. Sometimes I feel like it’s regressing, but overall my eye is back to normal, I’m losing the crease in my eyelid and people say it’s regaining its fullness. No orbital implant needed, thankfully.
Wish you all the best with your surgery – let us know how you go.
Lx
PS I could send you before & after pics if you let me know your email.
April 19, 2011 at 6:31 pm
I meant ‘worse for a week’!
May 31, 2011 at 9:08 am
Good luck!
June 1, 2011 at 4:40 am
Hi
Nope, been told its hard to correct mine. I still have another plastic surgeon to see. So still hopeful.
How much is your eye out. Would you send me a picture pls? my email is barnett_99@hotail.com.
thanks and good luck. xx
June 5, 2011 at 5:21 pm
Hi. My doctor told me that after the implant my eye might look slightly over corrected but it would settle down in time. My eye never did look too high. My eyeballs were perfectly lined up after surgery and have stayed that way.
It sounds like your one eye is pretty high. Maybe give it a few weeks and see if it comes down a bit?
June 5, 2011 at 9:34 pm
I had a similar experience–the surgery eye was definitely higher. It was indeed the swelling. Since it was over 8 years ago, I can’t recall how long it took the swelling to dissipate (10 days?), but after it did, my eyes were aligned–and they still are aligned.
I as pretty surprised at the amount of swelling (I had the implant and sinus surgery at the same time). I do remember thinking to myself why anyone would ever have elective plastic surgery (I didn’t consider my surgery elective).
June 6, 2011 at 4:53 am
Keep me posted, sounds like your eye will come back into alignment.
M xxx
June 15, 2011 at 1:03 am
Well, I recall going back to work after three weeks (I worked at a university and scheduled my surgery between semesters) and my co-workers definitely noticed that I had had surgery. While I tend to be more aware and critical of my own appearance, it was obvious that I still looked odd at that point based on the reactions of those around me. I, too, had double vision initially, which added to the suckiness of the situation because I couldn’t pass the time by reading a novel or watching a movie, but I did listen to a lot of good music. That said, there are just as many similarities as there are differences in all of our cases, so I hope you don’t mind my giving you a bit of unsolicited advice to listen to your instincts–no one knows your body and how you feel better than you do :). It’s really important to advocate for your care.
I’d be taken aback, too, if my doctor were moving out of the country. Is it possible for your doctor to refer you to a new doctor before he/she leaves? It would be great if all three of you could then meet together to ensure a proper knowledge transfer.
November 18, 2011 at 1:14 pm
Hello,
Glad you are feeling good. Is that o.k. if I willo ask what was your doctor name and what hospital? thanks,
Anat
November 20, 2011 at 5:39 am
Hi, Anat. I’m not sure if your question is for me since your other post mentioned you’re looking for a doctor in the NY area. FWIW, Dr. Man Kim, an opthamologist at Group Health Cooperative in Seattle, performed my surgery. He’s excellent. http://grouphealth.prismisp.com/Details?clientProviderID=2865&clientAddressID=491
Best of luck to you.
June 22, 2011 at 2:53 pm
Oh wow, I’m sorry you are going through all this. Good luck!
June 23, 2011 at 2:01 am
It’s good that you’re following up with someone else. Regardless of the cause of the pupil dilation, it sounds like it warrants a closer look by a doctor. I’d be pretty distressed after hearing a statement like “go to the ER if you experience any dizziness or headaches.”
Good luck and keep us posted.
June 23, 2011 at 5:55 am
Hi djean,
What a nightmare, you must be very frustrated. I thank you for detailing your experience, as you know I contemplating this orbital floor implant myself, I would be taking some time off of work, so I am very interested in the afterwards experience, to see what impact it has.
I don’t want to be more self conscious afterwards either with the eye, than now, that would defeat the purpose.
I really hope things settle down and the eye gets better for you, and thanks so much for sharing your experience. Sounds like the doctor needs to take a bit more responsibility. Any bruising still? I would still be interest in before and after shots if that somethings you be willing to share, and can send you my email address.
I have three appointments next months and I also have a Dr sourced via this website than I can a third opinion from should the doctors/surgeon here is Scotland be against operating.
I am seeing the third plastic surgeon at the end of July for his opinion.
Keep me posted, and I’d push that doctor a little harder, on waiting six months, its seems long time to wait when you experiencing further problems.
Good luck, I’ll say a wee prayer for you.
thanks,
Mandy (Scotland)
July 13, 2011 at 3:58 pm
I was just diagnosed with SSS yesterday. My diagnosis came fast, I went to my primary care physician on Monday (as well as an opthamologist), they both recommended an MRI, which I had on Tuesday – somehow the radiologist looked at the films and realized what I had, so here I sit on Wednesday with my diagnosis. I am lucky, but am feeling overwhelmed. Today I met with the ENT surgeon and I was not pleased. He told me that he expected there would be no improvement whatsoever with my eye post-surgery. I fould that to be upsetting and he said that he could understand because “I was a woman and therefore appearance is important.” I could barely respond through my rage. He additionally added that this wouldn’t even serve as a fix, but would merely slow the progression of the disease – I don’t think he knows what he is talking about. However, that brings me to my question…. how did people go about finding doctors to treat this? Is everyone using an ENT for the sinus surgery? What kind of doctors are people using for the orbital floor implant? Also, names of doctors would be helpful (if you liked who you used) and their location.
As others have said, thank you, Carolyn, this website it wonderful.
Melinda
July 13, 2011 at 5:23 pm
Hi Melinda,
I can’t believe a doctor would say that comment about being a woman to you. I’d go to another one for a second opinion and to see if the second one would have better bedside manners.
I don’t know if you read my other posts, but I had a tough time with my diagnosis. My neuro-ophthalmologist dropped my insurance right before I was going to get the answer as to what was wrong with me. I had to go to his office to get my records, and when I was reading through the CT Scan results, the technician had mentioned Silent Sinus Syndrome. That was how I found out about it. I then went to an ENT who said I needed surgery immediately. My parents were concerned that he was just trying to get Christmas money for his kids. My dad was the one who told me to contact Johns Hopkins. After the other ENT I tried to go to hadn’t even heard of Silent Sinus Syndrome, I took my dad’s advice and that’s how I saw Dr. Andrew Lane at Johns Hopkins in Baltimore.
July 14, 2011 at 2:17 am
Hi, Melinda.
To answer your questions, an ENT performed my sinus surgery and an opthamologist performed the orbital reconstruction.
You didn’t mention where you’re based, but you can always search the medical literature for specialists in your area. Pubmed is a good starting point and a search by “silent sinus syndrome” returns over 80 articles like this one http://www.ncbi.nlm.nih.gov/pubmed/21242847. Author affiliations are usually cited, so you may find one who practices in your state/province.
There’s much more known about SSS than just 10 years ago, so it’s worth getting a second opinion and finding a doctor you trust. Often it’s up to patients to be strong advocates for themselves and make sure their concerns are addressed since doctors (and people in general) aren’t always the best communicators. While it might take some persistence, finding a doctor who you trust is providing the best advice and expertise makes such a difference. Everyone’s case differs and from what I’ve read on this list, some with minor enophthalmos did not need the orbital reconstruction, while others (like me) benefited from it.
It sounds like you’re well ahead of the game and in a great position to make some informed decisions about what comes next. Good luck!
July 13, 2011 at 5:39 pm
Hey Melinda,
Not sure how close you are to Vancouver Canada but Dr. Amin Javer ( http://www.drjaver.com ) is here and he was fantastic. I had the sinus surgery in Feb 2010 for my SSS and my eye was 90% back to normal within the year that follwed. It was about $5000 to do it privately but well worth it as I did not need the orbital implant at all. He said he has done about 100 sinus surgeries for SSS and right now is actually using me in a case study he is publishing.
At the very least I would get a second opinion and find a doctor with plenty of experience with this condition.
Jean
July 14, 2011 at 9:22 am
Well, I scheduled an appointment at the University of Texas Southwestern in Dallas. I live in Louisiana, but am willing to drive the 5 hours to get to a larger city. I am meeting with Dr. Matthew Ryan on 7/27/11. His nurse said that he was familiar with SSS. I will not be seeing the doctor I saw yesterday again!
September 22, 2011 at 7:47 pm
Hi Carolyn—again thanks for keeping this blog. So I just had to get another implant surgery at Hopkins because the doc messed up my first one. Needless to say it has been a struggle but I am hoping it is resolved now!
I was wondering if there was any possibility you could delete my previous posts? If not— or if it is too much trouble then of course don’t worry but if it is easy enough to do could you do so? Thanks again and I promise not to keep bothering you! Dorothy
October 25, 2011 at 5:30 pm
I noticed a difference in my eyes in April 2011. I first went to my primary care doctor who thought it was allergies. He gave me some drops and called it a day. A couple weeks later I went back and saw another doctor who also did not know what it was. She referred me to an optometrist who gave me an ointment and told me to come back. When that didn’t work, she referred me to an oribital & oculoplastic surgeon who immediately knew what I had. She told me to go get a CT and come back to see her. The CT confirmed that I had SSS. She referred me to an ENT who schedulded a surgery. Right before I was about to go into surgery, the ENT let me know that my oribital & oculoplastic surgeon was also going to try to do her part at the same time if it was possible. This made me very happy because I am getting married in March and was very hopeful to look like my normal self on my wedding day. As it turns out they were able to do both surgeries at once. It only took a couple of hours and I went home right after. I have a saline balloon still in my sinus and will need to keep it for another 9 days. (Three weeks total) My face is still numb on the left side, but I’m told that this is normal. I had a slight black eye and some swelling, but looked almost completely normal in one week. I was out of work for one week because I originally had a tube for the balloon coming out of my nose. I went back to work when they were able to tie the tube off inside my nose.
I had a check up with the oribital & oculoplastic surgeon one week after surgery and she said my eyes are identical right now, but that it could change, and that sometimes they have to do the surgery again. I will have to wait (Months) to see if that is the case, but for now they are the same. I also am wondering if it may change when I get the balloon out in 9 days.
I have my two week follow up with my ENT today and will see what he has to say.
I am thankful for this site.. there is very helpful information on here and I hope that my story my be helpful to someone as well.
And as a side note.. I also expierenced headaches and am waiting to see if I still have any now having had the surgery.
Alisa (Los Angeles)
February 10, 2012 at 8:31 pm
Hi, I would really appreciate a response…I really need help.
Could you please tell me what your ENT doctor did to check your sinuses? Mine only looked up my nose with his eyes, and was reluctant to do anything else 😦
February 11, 2012 at 12:35 pm
The ENT doctors stuck a long slender instrument with a camera up my nose. At Johns Hopkins, they had a TV screen so I can see the results myself as well.
I don’t think just looking up there with the naked eyes would have shown the blockage.
February 11, 2012 at 2:19 pm
I was told by my doctor that a CT scan was needed to definitively diagnose SSS. When I first went to the doctor, niether she nor I had any idea what was going on so she ordered an MRI. Even though the MRI was what caught the SSS, my sinus doctor required a CT scan before he did the surgery. I hope this helps.
February 11, 2012 at 2:20 pm
Hi, my doctor looked into my sinus with a scope and then took a cat scan. Sounds like you need a new ENT!
February 13, 2012 at 2:34 am
I had a CT scan as well, which showed negative pressure. I saw the xrays and it was very obvious — one side had pressure and the other didn’t. I don’t think my doctor would have ordered the CT scan so quickly if it weren’t for my noticeable sunken eye/enophthalmos.
If your doctor does order the CT scan, the images on these pages are similar to what I saw in my xrays. Night and day — one side has pressure and the other doesn’t.
http://www.neuroophthalmology.ca/cases/case47/case47answer.html
http://roentgenrayreader.blogspot.com/2009/09/silent-sinus-syndrome.html
February 13, 2012 at 1:27 pm
Thank you so much Carolyn, Melinda, Deana, and Linda for your extremely helpful responses 🙂
February 29, 2012 at 10:27 am
helllo – i know this all happened a while ago 0 – but i have just been diagnosed with SSS and have exact samed symptoms you have – also the sunken eye!
how are you today ? and did you ever go for the eye surg?
i still have to go for the sinus operation -after i was mis diagnosed – went to eye sergeon then an oral sergeon and then finally they sent me to an ENT which they picked up the SSS
from south africa
February 29, 2012 at 10:39 am
Hi Lauren,
I’m doing well. I never did get the surgery on my eye. I was lucky that just the sinus surgery helped my eye get mostly back to normal. It isn’t 100% perfect, but it isn’t so obvious.
March 1, 2012 at 9:06 am
hi carolyn – well im hoping that’s going to happen to me – will keep in contact with my progress – im so greatfull for your blog – to know that im not the only one out there with this SSS
thank you
March 2, 2012 at 9:15 pm
Hello all. I would first like to thank Carolyn for creating this blog. I stumbled across it while searching endlessly for answers as to what is going on with my eye. I have read every single comment, and while I believe my situation is a little different than most people on here, I have still found some very helpful information.
Let me start at the beginning. I had a very bad car accident in 2001 that caused damage to the nerves on the right side of my face. Since then the nerves that control my right eyebrow have never been as strong and it’s a little lower than the left one. This hasn’t bothered me too much, since I cover it with my bangs. But, a few months ago I started to notice that my right eye was looking a little strange. I went to see my family doctor and she sent me to have a Cat Scan, and I then went to see an Ophthalmologist. He measured my eyes and it just so happens my right eye is 2 mm farther back than my left. I initially thought I suffered from an orbital fracture at the time of my car accident, and that was what caused my eye to sink, but the doctor said there was really no way of knowing after all this time, and that my scan looked fine. He then told me that there are basically two options – to insert an implant, or to inject some fat behind my eye to push it out. But that he suggested to not do either one since I am not currently having any problems with my vision. He stated that both of these operations could cause blindness or double vision. While I definitely understand that these risks are serious, at the same time I am extremely self conscious of this “deformity” I’m feeling at the moment. I work in an office and am finding myself trying to hide my face from people. This has caused me some depression and the feeling of not wanting to leave my house at times.
I guess my question is to anyone on here that has had either the implant or an injection. Did you suffer from permanent blindness or double vision after the operation? Do you feel that the risk of having the operation outweighs the life long deformity? I am only 29 and can’t imagine looking this way for the rest of my life. At this time I am seriously considering getting a second opinion, specifically from Johns Hopkins in Baltimore. I have heard nothing but great things about Wilmer Eye Institute, and I’m hopeful that they can help me in some way. Dr. Michael Grant is the specialist that seems to stand out to me. Has anyone had any experience with him? I’m really eager to hear any opinions or advice that anyone may have. I just feel very frustrated and overwhelmed with this whole situation, and any help would be greatly appreciated. Thank you!
March 4, 2012 at 2:24 pm
Hi Carrie –
I’m sorry this happened to you. I had the implant put into my eye and have not experienced any double vision or blindness. Yes it is a side effect, but my oculoplastic surgeon told me it never happened to any of his patients. I am 35 and really weighed the pros and cons of the surgery and decided I was too young to live with the way my eye looked. I understand how you are feeling. I also felt embarrassed and self consious. You are young, you should be fine to get the surgery. I’ve read through some posts on this site of people who had the surgery years ago and its held up well. I was happy with the decision to do the surgery and my eye is not perfect but looks much much better and most people can’t tell there was anything wrong with it.
March 6, 2012 at 7:23 am
Thank you so much for replying! I have about 2mm of difference at this time, and I’m just really worried that it will get worse. I have an appointment with Dr. Grant at Wilmer Eye Institute on March 19th, so we’ll see how it goes. I’m really just confused as to what the better option is, the implant or fat injection. But I guess I’ll have more answers on the 19th! Thanks again for your reply, and for helping me to see that I’m not alone in this battle.
March 6, 2012 at 8:48 am
Hi, you are not alone. Sorry this happened to you. I know how hard this can be. I have Sss since 2005.this happened a few months after I had a baby . I only recently started to check an option of putting an implant. Two doctors in NY said not do it has I do not have currently a problem of double vision, and that surgery will not improve my symptoms. I do not like the way my eye looks. I am also thinking of looking into fixing the sinus as its volume never got better. Let me know what the doc at j. Hopkins had to say. Good luck.
March 9, 2012 at 2:50 am
It’s great that you’re getting a second opinion and advocating for yourself. Whatever decision you make, it will be an informed one and you’ll feel better about it. Best of luck on the 19th :).
March 22, 2012 at 7:54 am
Well.. I had my appointment on Monday with Dr. Grant at the Wilmer Eye Institute in Maryland. I took my CT scan disc with me for him to review. I waited 90 minutes past my appointment time, only to hear him say “Good news, your scan looks normal.” He then explained that since my vision is good he would not suggest having surgery at this time. I left there thinking how is this good news? I do not want to live with my eye looking this way forever, and I’m very disappointed in how Dr. Grant made me feel. He made me feel silly for complaining about this. I know 2mm may not be much, compared to what other people are experiencing. But I still can’t help but think something can be done to help this, there has to be a way to fix it. And from the comments I’ve read on here, from anyone that has had an implant, it has not caused any problems with their vision. So that makes me want to get even another opinion, I don’t want to give up on this! I’ll be calling Wills Eye in Philadelphia, and hope and pray I hear some good news from them.
Also.. would it be possible for anyone that has had an implant to send me their before and after pictures? I would really love to be able to compare myself to someone with a similar problem. You can send them to my email: CarrieLee1010@gmail.com. It would be GREATLY appreciated!! Thank you!
March 22, 2012 at 8:11 am
Hi,thanks for the update. I am sorry it did not go the way u wanted. This happened to me twice as well, I went to see two orbital surgeons in NYC and they told me as I do not have a vition problem they do not recommend now to do it. But oneI wa sensitive and really tried to understand what I want to get better in my look and was honest with what he can get better and what not. He did say to me to think about it and to come to see him again and discuss it over if I want.he never made me feel that it is not important. His name is dr. Robert Dellaroca. From NY ear and eye hospital in Manhattan. I was thinking of going to j. Hopkins as well but from u it sounds like I will be waist my time. Tell me who u see in Philadelphia. Good luck! Do not loose hope:)
March 22, 2012 at 9:01 am
If you’re already at Wilmer at Johns Hopkins, you might want to consider seeing Dr. Elba Pacheco there. She did my implant surgery and was wonderful. She has a lot of experience with correcting SSS. I’ll try to dig out the exact mm difference I had pre and post-op, but I seem to remember I still have a 2mm difference post-op with the implant (I had my surgery in 2002). I’ll also see if I can find any pics and forward to your email. Here’s an old article about Dr. Pacheco and SSS: http://www.hopkinsmedicine.org/hmn/S98/dept.html [scroll down to “When an Eye Goes Out of Orbit” article]
G
March 22, 2012 at 11:37 am
Hi G,
I opened your link and read about Dr. Elba Pacheco , I will look more into it, her work looks impressive. is there a chance I get also see pictures of before and after (codemari@gmail.com).I think I have a bigger difference, it should be around 3mm as recently measured by an orbit doctor. before the sinus surgery it was 6mm. thanks so much.
March 22, 2012 at 11:49 am
Hi G,
I foudn out that Dr. Pacheco is nto a surgent at j. hopkins any more, she opended her ouwn eye surgery center in MD. she is still teach there.
March 22, 2012 at 12:56 pm
Sorry, I should have been more clear — I have a 2 mm difference still now after the reconstruction. I started with an 8mm difference sinking in and 6 mm difference downward in my face (eye was sunken and misaligned due to SSS). I have posts earlier on this page under GG if you’d like to read more about my experience with the reconstruction part.
Dr. Pacheco was absolutely wonderful and I would highly recommend her. I had almost no bone left of my orbital floor by the time I had the reconstruction and now most people don’t even notice it (I do still notice the small difference, but it doesn’t bother me). I do have some numbness between my nose and cheek on that side from the nerve the implant sits on (since I have no bone there, just the implant) and wear glasses for astigmatism in that eye. I do still get sinus infections on that side, but they are less frequent. I am very happy with the result and highly recommend Dr. Pacheco.
I’ll try to find some pictures and email them to you later today.
March 22, 2012 at 1:27 pm
Thanks . Were you wearing glasses post Sss or you needed them after the orbit surgery? Anat
March 15, 2012 at 5:46 pm
Hello
I’m curious about whether an x-ray is sufficient for detecting SSS, or if a CT scan is an absolute requirement (the x-ray would be with a sinus Dr.).
Thank you,
March 15, 2012 at 6:13 pm
I really don’t know. I was sent for multiple CT scans, but never an x-ray.
March 15, 2012 at 9:08 pm
Hi Mark,
I doubt that an x-ray would be sufficient – when you say a sinus doctor, do you mean an ear, nose & throat specialist? They would generally order a full CT scan, which not only shows the extent to which your sinuses might be compacted, but from which they can also measure the exact degree (to the millimetre) of how much your eye might have moved.
Cheers,
Lisa (Sydney, Australia)
March 23, 2012 at 7:09 pm
CT Scan show the alignment of the eyes, and the blow out of the orbitial floor. I had an MRI too, then a CT Scan.
Just an upate from Mandy In Scotland. I have had the first surgery which open the sinus back up. There has been an improvement over the last year, and the different is minor. However sometime on days when I am tired I can feel the eye different, and the gap in the lid is greater.
A friend was told by a medium, that I should have the second surgery which I have put off. But it is very strange its come up. I seen three surgeon, and only one is brave enough to do a further op. I think I may go back for further consultation.
Just sharing.
Mandy
November 2, 2012 at 11:05 am
Hi – I was diagnosed with SSS in August after having my first child. I had the sinus surgery one month ago. My eye still looks pretty bad. Does anyone have a comment on how long I should wait before having the implant put in and also what the recovery time from the implant surgery is? I am in Atlanta and would also love a good recommendation for the implant surgery.
November 2, 2012 at 11:32 am
Hi Robin,
I am sorry that you are going through this. My eye happened to improve after the sinus surgery over a few months. I’d wait a few months and see if it improves for you. I had the opthalmologist consultation appointment about a month after my surgery, and at the time, I decided the risks of the surgery outweighed the benefits of the wide eye. Then over the next few months, my eye got even better. It’s not 100% fixed, but it’s greatly improved. Nobody notices but me, unless I point it out to them.
November 2, 2012 at 11:45 am
Thanks Carolyn – I will try to wait it out. Its so hard having a new baby and feeling self-conscious about taking any pictures with her. Its great to hear that you had improvement. Hopefully I will too and can avoid another surgery.
November 2, 2012 at 11:48 am
Ugh! That happened to me after having my baby. It was hard. Wait a bit -6 mo to a year. I had the implant right away and my sinus closed up again. Had to redo sinus surgery and should have another implant put in to get it right.
November 2, 2012 at 1:11 pm
was wondering if this has anything to do with being pregnant cause it happened to me after I had my baby, had sinus op in April my eye not perfect yet but DR seems to think there is improvement, he said I must give it time-another year!
November 2, 2012 at 1:31 pm
Other people have wondered that, too, but I have never been pregnant and I had SSS.
November 13, 2012 at 7:05 pm
It happened to me after I had my second child. I had the sinus surgery in August 2011. I did not notice a significant difference right away. I thought that in the end I would end up doing the implant. However two things happened. Over the course of the last 15 months it has gotten VASTLY better and I think that I notice it less (and it bothers me less). My husband says he can’t even tell. I will always be able to tell that there is a difference in my eyes. Something that helped me was to look at other people’s eyes – nobody’s are symmetrical. I won’t end up getting the implant surgery, it’s not worth the risk to me.
November 13, 2012 at 7:54 pm
Hi, I will had the sinus surgery 8 years and didthe not do the implent, i got it four months after giving birth to my first daughter, there was no issue after second delivery. I am afraid to do it as currently I do not have double vision and can actually get it after the orbit implant. Some days I will see it more and some less, when it is a rainy day and dump it is more noticed, but during the morning it is usually better. I also notice that good makeup will help, so i do not use anymore brown or blak mascar, also a blue eyeliner makes my eye appear better. There are risk at this surgery and i am afraid that i will not able to drive anymore. I understand your feelings …you will have good days. Good luck with your surgery.
November 2, 2012 at 12:11 pm
Thanks Deana – I will wait. Did your sinus close up because of the implant or was it unrelated? I am wondering how long I will need to be concerned about this happening again. Do you now go in for regular ENT appointments? Thanks for your comments.
November 2, 2012 at 7:37 pm
I think my sinus was always going to close back up. I can’t be sure it’s not closed right now. I could go back to my ent and u could have another surgery, but I’m not in pain. I’m starting to be ok with the imperfection. The implant I got corrected a large part of the problem, but my eye got sunken in again when my sinus closed again. Guess it depends on how many surgeries I feel like having. I’m getting tired of them, the implant surgery is not easy.
November 7, 2012 at 3:19 am
Hi, Robin. I had the sinus surgery and orbital reconstruction at the same time a decade ago (I think I may be in the minority for having both at the same time). I can definitely see the logic in having the sinus surgery first and then waiting to see if the sunken eye/enophthalmos decreases.
I’ve had no further sinus collapses since my dual-surgery nor have I needed any further surgeries. In fact, my doctor said it would be nearly impossible for my sinus to collapse again, but I don’t recall the reasons. With a decade more of documented cases to draw from, your doctor should be able to provide some evidence-based data on whether or not the orbital reconstruction puts you at a higher risk for another sinus collapse.
Keeping in mind that everyone’s experience is different, my recovery from the orbital reconstruction was no walk in the park. I had quite a bit of swelling initially and it was at least a few weeks before I got back to my normal routine. The reconstruction worked (thankfully), but I would find it pretty darn challenging if I were a new mom. Before I had the surgery, I thought my sunken eye was oh so obvious, but others didn’t notice unless I pointed it out to them.
I’m really sorry you have to go through this and I hope you don’t need any further surgeries.
November 8, 2012 at 4:26 pm
Thanks for your note Linda – I’m sure you understand my frustration! Would you mind me asking who did your surgery?
November 11, 2012 at 11:23 pm
Hi, Robin. I’m from Seattle and I had my surgery at Group Health Cooperative. Two specialists performed a dual surgery — an opthalmologist, Dr Man Kim, reconstructed my orbit, and an otolaryngologist, Dr David Mehlum, took care of the sinus.
As for Atlanta doctors, I searched Pubmed.gov by
“silent sinus syndrome” atlanta
to find if there are any scholarly research papers on SSS authored by doctors in Atlanta. I found a 2011 paper by Emory University faculty:
http://aes.sagepub.com/content/31/2/181.abstract
I wouldn’t rely on the aol.com email address for Dr. Codner. Instead, you can search the Emory directory by ‘codner’ for his current email address – http://directory.service.emory.edu/
I can’t find Kimberly Singh in the Emory directory, so she may be practicing elsewhere.
I have *no* experience with the doctors who authored the paper, and I’m only mentioning them because publishing a research paper in a scholarly journal is an indication that they have some expertise in the subject and may be able to point you in the right direction.
I hope this provides a good starting off point. Good luck, Robin!
P.S. I found 3 or 4 abstracts on SSS on Pubmed that gave reason for hope that an eye may resolve itself with just the sinus surgery. But, I’m definitely not a doctor and only a doctor is qualified to interpret results from the scientific literature and recommend the best course of action.
November 15, 2012 at 10:03 am
Thank you for your help Linda. I think I will wait awhile for the surgery since it is already challenging working and taking care of a 3 month old! Hopefully I will not need the surgery……
November 8, 2012 at 4:14 pm
I think I would like to have the orbital reconstruction, but have no idea who to trust to do the operation. I am in Atlanta, GA – does anyone have any recommendations?
I went to one guy this morning and come to find out he has been in numerous lawsuits for botching surgeries. Also, when I asked him if he had some pictures of silent sinus patients, he could not come up with them. This is so frustrating!!
November 9, 2012 at 1:11 pm
Sorry for all the posts, but I have one other question for the group – did anyone fly after the surgery? I travel for work and am scared that it will cause my sinus to fill up again.
November 13, 2012 at 6:13 pm
Robin – Just to chip in, I also had SSS after my first child. I had there sinus surgery, and have six monthly check up’s, the first six months the eye was still out, its now 2 years since the sugery, and the eye returned to normal more or less. On a tired day I get a little gap, but its so minor, that orbital floor reconstrution work could not improve it any, because its now so slight and on a good day its looks normal. It did take time, probably about 1 year before I stopped noticing it was differnet as it corrected itself.
Mandy Scotland
November 15, 2012 at 9:45 am
Thank you so much for your comment Mandy – it is great to hear that it gets better for some people. I think I will try to wait on the implant – at least a couple years based on what people are saying. Plus we are so busy with the new baby that I would love to avoid surgery. Crazy that it happens to a lot of us during or right after pregnancy. There has to be a coorelation!
November 16, 2012 at 3:04 am
i also think there must be something linked with pregnancy, because there seems to be more and more out there!!!!! it sucks thoug – days when i have a bad night with baby. i feel it in my eye the next day! and it looks more sunken then normal!!!
February 27, 2013 at 2:43 pm
Hi, I was diagnosed in 2010 three months after the birth of my daughter. There must be some link to pregnancy because my eye issues developed relatively suddenly during the later part of my pregnancy. However, I have found nothing in the research to indicate any connection. Perhaps I should design a study!
Anyway, I just wanted to write to update you all on what happened to me in case it helps someone else. I got sinus surgery in January 2011 and then the orbital surgery June 2011. I wish I had waited at least a year in between because I think there may have been a chance my eye would have improved, however I didn’t know it at the time and the doc suggested I wait four months to see if there was a difference. The second surgery was unsuccessful because the doc put too large an implant in under my eye. I could tell right away something was very off but he denied it for weeks until finally his superior agreed and redid the implant in September 2011. So now I have an appropriate sized implant but my eye still looks distorted because the surgeries caused fat atrophy under my eye. Bottom line is everything is okay and I can see and my eye doesn’t look terrible but it definitely does not look back to normal. Perhaps it will improve with time and I am just happy to have the surgeries over with and thankful to the doctor that corrected the surgery for me.
I would very carefully plan the orbital surgery and make sure the doc has experience with silent sinus syndrome and perhaps have them show you before and after photos. Also make sure it is necessary in terms of risk / benefit. I still don’t know if my surgery was necessary but I was scared my orbital plate would totally collapse without the surgery.
February 27, 2013 at 4:09 pm
Hi, sorry this happened. It happened to me after I delivered my daughter. Never did an orbit surgery, too scared. Did u suffered from double vision? Does it look better now? Anat
February 28, 2013 at 3:24 pm
Honestly I never had too much in the way of double vision thankfully. However, I was scared that I would because my eye “caved” in so quickly I didn’t know what to expect for the future and neither did the doc. My eye looks better than it did after my first messed up orbital surgery but it doesn’t look better than it did when I was diagnosed with silent sinus before I got any of the surgeries. It doesn’t look horrible, I guess it never did, it just looks weird in a different way. Symmetrical in terms of position but hollowed out so that it looks much bigger than the other eye and odd. If guess if I could do over I would not have gotten the orbital surgery, or I would have waited and been way more careful about which doc I chose. But then again I was really worried about waiting so maybe I did the right thing. And I have heard good testimonies about successful orbital surgeries for silent sinus syndrome and my husband had the same type of surgery for a broken orbital plate as a child and his eye looks fantastic. So you never know. Al in all, I can’t complain because my eye looks okay and I doubt people notice too much and I can see! I just still can’t believe I had a baby and three surgeries in one year, I never would have imagined that!
March 23, 2013 at 7:42 am
How long ago did you have the sinus surgery, Anat? Did your eye improve at all on its own? I am still contemplating surgery – its been 6 months since my sinus surgery and I do not see an improvement.
March 23, 2013 at 8:58 am
Hi…I had the surgery on may 2005, six months after I delivered my first baby. by th end of summer I looked a bit better..but after that there was no change, I would give it a year. The orbit never got back to origin location. I have never done a orbit plastic surgery..I went to two doc. In ny, they did not want to do it..to dangerous as I do not have double vision, there is a high risk that I will have it after the surgery and then I will find my self with a new problem that not so easy to solve and function with.
March 10, 2013 at 5:09 pm
I had silent sinus sydrome for probably two years. I never felt anything, Because of a tomographic photo I asked the dentist why one sinus (maxillary) looked so cloudy. I said I think it is causing double vision. He told me to see and ENT. I was given a referral. He told me I had SSS and it needed to be operated on asap. I figured my double vision would disappear after the infection was removed. Once in a while my vision was perfect, but it continued to be double. I went for eye therapy, but it is coming undone. The ENT doctor said that the infection was so bad that it had crept up to my tear duct. He said he had to remove most everything under my eye. My eye does not look any different than it did, but obviously it has shifted, as noted by my ENT, enough that it doesn’t line up with the other eye. he suggested plastic surgery to hold up the eye. The dr. I saw said he couldn’t do anything for me. Since my eye has not noticeably changed, I’m thinking eye muscle surgery might be able to align my eye. Any thoughts?
March 10, 2013 at 5:35 pm
You might want to get a second opinion from a different ENT. I’d also suggest getting a consultation from an ophthalmologist to find out about the orbital floor surgery. I don’t know anything about eye muscle surgery, as that was never suggested to me when I had Silent Sinus Syndrome.
When I was trying to get a diagnosis, the first ENT I went to also said that I needed surgery ASAP, but my family suggested I get a second opinion before going under the knife because it sounded like the first ENT was just trying to get free christmas money. He had all sorts of unnecessary procedures that he was going to do (taking cartilage from my nose to reconstruct the floor of the eyeball was one of them that I remember.) When the second opinion didn’t work out, I went to Johns Hopkins so I could be sure that I getting the best treatment.
May 22, 2013 at 1:50 pm
Just an update – I went to the doctor today and my eye has improved 1 mm up and out, so it is now 3 mm down and 1 mm in. She is having me wait at least another 6 months to see if it continues to improve. So, in some cases I guess it can get better. I will see how it looks at the end of the year and decide on surgery.
May 22, 2013 at 6:41 pm
Hello Robin. That is great news, I hope you continue to see improvement! I’m experiencing the “sinking eye” at the moment, and trying to find a doctor in my area who can help me. I feel as though mine is so noticeable, I just want to hide in my house. It is extremely hard to deal with. I was wondering if you’d be willing to send me a pic? I would like to see what 3 mm down and 1 mm in looks like, so that I’m able to compare what I’m experiencing to that. It would be greatly appreciated. You can send it to CarrieLee1010@gmail.com. Thank you!
May 23, 2013 at 2:47 pm
Hi Carrie Lee. If you feel like you have silent sinus, you should go to see an ENT as soon as possible. They will have you go for an MRI to confirm the diagnosis and then have the sinus surgery. It will only get worse until the sinus is open. As far as pictures – I look very similar to the pictures in Carolyn’s posts above on Feb 22, 2011 and Sept 24, 2010. Good luck!!
May 24, 2013 at 3:38 am
well its been a year sine i was diagnosed with SSS and had the sinus surgery – somedays i feel my eye is really sunken in – ns otherdays it looks ok! when i m really tired it looks worse! My ENT and Maxillfacial surgeon said i should come back in a year/2 time to have another scan and see whether the eye is moving back – before they even thin kof any eye surgery!!! i also tend to get double vision every now and then – which freeks me out!!!!!!!!
nice to know there are others out there with this problem
Lauren from South Africa
August 19, 2013 at 11:56 am
Hi Carolyn! Big thanks to your for your blog on SSS. I was diagnosed after the birth of my son. My ent had No idea what it was back in 2008. I had to tell him, and he looked at me like I was crazy and sent me to a plastic surgeon who knew what it was and was shocked that I knew. I opted out of the surgery. Its been 5 years since and my eye has improved alot but in the evening when all the fluid starts to drain from my face it is more noticeable. Take pictures in the morning when your face is still nice and fluid filled! I’ve also noticed that if I do have to take a photo in the evening I just bend my head over, close my eye squeeze it tight right before the picture is taken my eye isn’t as bad in the picture. Give it a try. Just a tip! Thanks again! -Patty
September 19, 2013 at 6:43 pm
Hi Carolyn,
I Have been diagnosed with sss for over 18 months, ENT had my maxilla sinus drained etc and am awaiting orbit floor reconstruction surgery.
Its very interesting to hear of other people suffering with this rare condition.
my maxi facial surgeon has only seen three cases and is interested to do the surgery.
I’ve been to three different consultants. and finally my maxi facial surgeon
has taken me under his wing and is very interested to sorting it out.
hopefully I will have the op before Christmas.
The implant will be made to match a mirror image, of my right eye socket,
this is done from the CT scan I hade when they were trying to find out what was wrong with me.
Hope this stops the double vision and make my look like I used to.
great blog
Alec
England GB
October 4, 2013 at 2:09 pm
Greetings my wife after having a nose job, 2 months later she was admitted to the hospital for pain and dropping of the eye area and a severe case of Sinusitis and then after the operation of the Sinusitis later discovered this after visiting another surgeon that does plastic surgery and all and gave us some papers on this and wanted to see if there is any possible relation to the operation (nose job) that could be the cause of this occurring..
Steven (Spain)
October 22, 2013 at 7:10 pm
Does anyone know of a SSS specialist in California? Where do I begin???? I have double vision when I am tired and MRI came back saying it looks like SSS. Interesting that a lot of posts say this happened after birth of a child- me to.
Dee
Simi Valley California
October 22, 2013 at 7:21 pm
I wish I could help more, but I went to Johns Hopkins in Baltimore, MD.
November 3, 2013 at 4:02 am
It’s odd that your general practitioner who ordered the MRI wasn’t able to refer you to a specialist. You can always search Pubmed to see who’s written about SSS. Anyone who’s written an article for a peer-reviewed journal usually has some expertise. It’s a good place to start if you have no other leads (again, your general practitioner should be able to advise on next steps, including referring you to a specialist).
For instance, here’s a link to an article written by an Jeffrey Suh, MD, from UCLA:
http://www.ncbi.nlm.nih.gov/pubmed/23288826
And here’s a link to Dr. Jeffrey Suh’s page at UCLA:
http://www.uclahealth.org/body.cfm?id=479&action=detail&ref=122367
October 28, 2013 at 1:17 am
Hi guys…this is very interesting to me. I am sitting here up all night trying to figure out why the right side of my face is looking as though it is shrinking compared to the left. There is a very obvious difference and it started after having perlane filler in the orbital region. I am not sure if the 2 are correlated, but the problem is there and getting worse. Can you please tell me if this type of surgery would be covered if you have insurance or if it is considered cosmetic surgery? I live in Canada. Your replies are much appreciated!!!
October 28, 2013 at 8:25 am
Hi Carrie,
The surgery is covered by health care in Canada however there was a 6 month wait to have the sinus cleaned out for me. I opted to pay $5000 in Vancouver to have it done quickly, privately so my eye wouldn’t drop back anymore.
December 29, 2013 at 7:38 pm
Hi Carolyn.
I left a line on your blog in September.
Just updating that I Have my orbit floor implant operation in Feb and am glad that the double vision will soon be at an end.
I’ve been told that I should refrain from work for a least one week after the op.
My left eye position has never improved after the onset of sss .
The implant is made from mirror imaging my left eye socket,to my right eye socket ( the good one) which was taken from my CT scan.
Is this the usual amount of time that most people have to refrain from work after the op ?.
I don’t usually get nervous about hospitals, but now that its happening I’m getting a bit anxious.
It makes me realise that living in the UK, our National Health Service is something that should be adopted around the world.
Great blog.
Regards Alec.
December 30, 2013 at 11:09 am
Good luck on your surgery, Alec. Healthcare here in the states is a hot issue nowadays.
December 30, 2013 at 12:36 pm
Carolyn, thank you so much for creating this forum – it’s the only resource I’ve had access to once I was diagnosed with SSS 2 weeks ago.
I am currently looking for a surgeon that has extensive experience with SSS in order to have it corrected. Right now my orbital floor bone is “almost non-existent” according to my opthalmologist, and I will need surgery right away to rebuild the right maxillary sinus and put an implant in to support my eye.
If anyone has any pictures (before and after) from their surgery, or has surgeon suggestions, it would be greatly appreciated! I am currently at a loss as my primary care doctor and opthalmologist have never heard of SSS and unfortunately have no resources.
Thanks everyone! 🙂
December 30, 2013 at 1:01 pm
Well, I’m not sure where you are located, but I had my sinus surgery at Johns Hopkins in Baltimore. Other than that, I don’t have any suggestions.
December 30, 2013 at 2:23 pm
Thanks Carolyn. I’m located in New York City, but I’m willing to travel to find the best Oculoplastic surgeon possible that has experience with SSS. Johns Hopkins sounds pretty promising.
January 31, 2014 at 2:29 pm
Just an update – I have orbital implant surgery scheduled for March. After waiting about a year and a half after my sinus surgery, I don’t feel like my eye has improved enough, so I am going through with it. I am very nervous about the surgery, but I am tired of feeling bad about my appearance. I will keep everyone updated as I go through it.
February 1, 2014 at 2:16 pm
Good luck on your surgery!
February 3, 2014 at 7:00 am
Hi Robin,
Good luck with your surgery. I just posted an update after recently (3 weeks today) having the orbital floor implant done. I felt the same as you. I didn’t notice it everyday (most days though), but it really annoyed me.
So far, I am really happy I went through with it. I felt like I might have chickened out over Christmas but I didn’t and I’m glad. There was not any real pain 24 hours post surgery, just some discomfort (paracetamol is all I took and only a few). It did look very swollen (like I had been punched) for at least 2 weeks. I have stitches at the side (in the natural crease and I can’t even tell where they are/were now) and a couple internal ones too. My nose is still numb (normal for it to be for a few months) and under the eye is still a bit swollen and bruised. However, my eye does look much better. My husband and best friend both said that they never noticed my sunken eye before but now they have both independently commented that they had forgotten what it looked like before SSS and now that I have had surgery they can see it and it is much better.
I hope this helps
February 18, 2014 at 2:17 pm
Thank you for the encouragement Melissa! Much appreciated 🙂
March 5, 2014 at 8:20 pm
Hi Robin,
I’ve read your comments and was also very nervous about orbital surgery.
I had mine done on the 27th of Feb. It was not very painful and went very well. I have had a lot of swelling and brusing which is obvious but it looks to of been worth doing. my eye feels that it is where it should be and the double vision has improved. When the swelling and eye watering has gone the double vision will hopfully be a thing of the past.
I had sss diagnosed around 18 months ago and it seems such a long process to get the final surgery.
good luck with your op.
Alec
March 14, 2014 at 7:57 am
Thank you Alec – I have my surgery on March 24th and appreciate your post. It has been such a hard thing explaining to others how much this has bothered me. Hopefully I will have a good experience too!
February 2, 2014 at 5:45 am
Hi,
I posted on this sight early 2008 (I think) after having ENT surgery for SSS. I had, like many others, just had my first child. I decided at the time not to go ahead with reconstructive surgery as I had a baby and the ENT surgery was pretty rough. I had a 4mm difference after the ENT surgery.
Well, after much deliberation I decided to have the reconstructive surgery (orbital floor implant) in January this year (2014 – over 5 years later). I originally sought more information on the reconstructive side of things as I was unhappy with the way my eye looked in photos and how it felt at night (it felt tired and stretched? Not painful but I was aware that it felt different). Anyway, I asked my GP for his unbiased opinion and he said he felt it would get worse as I age. The muscles in my face would relax and my eye would change too. He said that I could even end up with double vision. So, I decided to do it. So far it has been much less painful than the recovery from the ENT surgery and I’m happy with the outcome. My vision is great (same as before surgery – I didn’t have issues yet), and the swelling is going down. I must admit I feel a bit like I have my old eye back! I will try to post before & after pic if able for those interested and still considering surgery.
The recovery has been ok (I did have that feeling “what have I done” for the first week. It is still early days, almost 3 weeks post surgery, but so far I am happy I went through with it.
I hope this helps – I know I read all the posts pre- surgery.
February 2, 2014 at 1:38 pm
Thanks for the update, Melissa. I think that is very useful information. I am glad the recovery hasn’t been too terrible.
February 3, 2014 at 7:03 am
Thanks Carolyn, this site has been really useful. It is good to hear others real experiences of SSS since it is apparently so rare.
February 4, 2014 at 9:18 pm
I’m a 37 year old male in Western upstate NY. My story begins today….
My numerologist diagnosed me with SSS today after my MRI results came back. It was about four months ago when I woke up one day with a very red itchy eye….I thought it was pink eye, but it cleared up after a day so I didn’t think much of it. Then over the next two weeks I noticed I had some mild double vision. I thought it might be eye fatigue because I work at my computer from 9-5.
I went and saw my ophthalmologist who said the eye looked fine. No cornea problems..my LASIK work looked fine….blah blah. i had some mild eye pain when I looked up and in with left eye. He said he didn’t see anything wrong. He said it could be due to some inflammation and suggested I take Advil and eye drops for a few days.
Well my eye problem was more of an annoyance than anything so I didn’t really worry about it too much. After christmas I went and saw my PCP who said he could tell my eyes weren’t “tracking” properly. It was very very subtle. He sent me for some standard blood work to rule out thyroid issues. All my blood work was normal. He also referred me to a neurologist who confirmed the eye tracking issue and also thought my left eyelid looked a tad droopy. She sent me for MRI of brain and orbits. I was worried that I might have MS or a tumor.
I had my MRI yesterday and today my neurologist called and told me I have SSS and she is referring me an ENT.
There isn’t an obvious sunken look but now that I really look, my left eye does seem just a touch lower than my right.
I’m hoping the ENT confirms that it’s SSS and that I can find a surgeon who has SSS experience. I’m hoping I won’t need the second surgery and that my double vision goes away….
Any advice would be greatly appreciated.
April 23, 2014 at 12:26 pm
Update 4/23/2014 – I had my surgery today in Rochester NY by Doctor Frank Salamone at Rochester General Hospital. Because my orbital floor bone had sagged and basically consumed the place of the normal sinus passageway they had to create a new “hole”. The procedure was done through my nose. They had to repair a deviated septum as well. Entire thing took about 1 hour. Arrive at hospital at 6am and out by 10:30am. All went well.
February 18, 2014 at 10:27 pm
HI to everyone that is reading this blog .I did write on the past about my experience. I had SSS 10 years ago at my right side.was always afraid will have it in the left. I am posting because I just had my left side done Friday. I had pain in my left side, it was similar to the pain I. Have had years ago so asked my ENT for Ct,the eye looked find but the sinus not. Be aware of any pain in the other side,the doctor may tell you that it rare that most likely will not happen again but this can build up for years (That’s why it called silent ). I am having a Ct for my sinus every other year,that’s why I tracked it early. Make sure to follow up and monitor. Take care ,Anat
March 5, 2014 at 8:34 pm
Hi Carolyn,
Just updating from my previous posting. I had my orbital sergury on Feb the 27th.
It went well. Lots more swelling and brusing than I was expecting but seems to be going slowly. This blog is really good and has helped me to understand more of sss than otherwise would have.
I never thought It would take three consultants from different medical fields to put right my sss.
great blog, fantastic help and comfort from reading other peoples stories.
many thanks
Alec.
April 7, 2014 at 1:52 am
Carolyn–for someone who is seeing similar, noticeable asymmetry in the eye and may suspect SSS–do you suggest going to an ophthalmologist or ENT first?
April 7, 2014 at 7:23 am
I guess I would probably go to the opthalmologist first, unless they don’t use your insurance, and then I’d go to the ENT. I would also ask the ENT if they have ever heard of SSS before making the appointment.
April 7, 2014 at 9:16 am
But I am not a doctor so that is only my suggestion.
April 7, 2014 at 9:18 am
Hi All,
I posted in December 2 weeks after I was diagnosed with SSS, and I thought I’d share my story so that hopefully it’ll help others.
I first noticed there was something wrong with my eye in October 2013, a week after I moved into my new apartment. I noticed in the mirror that there was a change in my upper eyelid – it looked droopy- so I took a Zyrtec thinking I was having an allergic reaction to something. It didn’t help, but I didn’t really think too much of it since I was so busy with work and the move. A few weeks later I noticed in photos that my eye seemed off track, lower than the other. I started to think that maybe the muscle in my eye wasn’t as strong since I hadn’t worn my glasses in a while. I then made an optometrist appointment for December.
In mid-November I noticed my eye started to feel different. The eyelid looked worse and the eye visibly seemed lower than the other. This is when I started to get concerned. I called my optometrist and upped my appointment to Thanksgiving. The optometrist was no help; I showed him photos proving that my eye never looked like this, and described to him that it felt like I couldn’t hold my eye up, especially when I was tired. They chalked it up to allergies and that was that.
I then referred MYSELF to an opthalmologist right after the appointment – I went to the only person who would see a walk-in at such late notice the day before Thanksgiving. They recognized the problem and wrote me a script for a CT scan.
I had my CT done in NYC, and the radiologist diagnosed me with Silent Sinus Syndrome.
The opthalmologist and my primary doctor unfortunately never heard of SSS and had no answers for me, which was scary. They gave me their advice on what they thought I should do. I was then left to “do my homework” and find someone on my own.
Thankfully, a co-worker came to me and told me she knew someone that donated a great deal to Mount Sinai and may know someone that could point me in the right direction. They made many phone calls and came across the office of Dr. Albert Wu, and Oculoplastic surgeon, who had experience treating SSS. I then made the appointment and saw him the day after New Years.
Seeing Dr. Wu was such a relief. Knowing that he had treated SSS and was so knowledgeable in that area, I knew immediately that I was in good hands. He referred me to Dr. Satish Govindaraj, an ENT, who also had experience treating SSS. The plan was for them work together to surgically treat SSS by opening and aerating the right maxillary sinus (which was collapsed) and place an implant under my right eye.
My surgery took place on February 26th. Originally they were going to surgically treat the sinus first (with both surgeons present) and then Dr. Wu would treat the eye 6 months down the road, however the eye had recessed and lowered so rapidly that they decided to do the full procedure all at once. Bone was removed to open up my sinus and all of the mucus trapped in the sinus was removed. Three medpor implants were placed under my eye to bring the globe up and forward. The surgery was a success.
If anyone is unsure of where to go for treatment, I highly recommend Dr. Albert Wu and Dr. Satish Govindaraj at Mount Sinai. They were extremely knowledgeable, attentive, and made sure that everything went smoothly, even throughout recovery. I’d also like to recommend Dr. Joshua Rosenberg, who was able to correct a bump and volume loss in my nose during the surgery (from a nasal fracture, which I believe caused the SSS). They were all amazing, and I was so incredibly lucky to be in their care.
If anyone has any questions about SSS, I’d be happy to help. I know how scary it is when you don’t have any answers.
April 16, 2014 at 10:45 am
Hi all – I had my implant surgery on March 24th and so far have been pleased. As others have said, the recovery is tough, but not horrible. I was back to work in about a week and a half without much noticable swelling or bruising. It has been three weeks and there is still some swelling of my lower lid and numbness in my face, but otherwise a success. My eye is back in its original position, more or less. Post surgery, I wish I had done it sooner than later (I waited over a year and a half). BTW – I had Dr. Hee Kim in Atlanta at the Emory Eye Center perform my implant surgery and see was wonderful.
May 29, 2014 at 10:57 am
Hi,
I posted my experience earlirer this year.
Just an update to say that my first impression of my corrective orbin floor
surgery was looking good,although three months down the line things
have not gone too well.
I had a great deal of swelling which was due to a build up of fluid.
this was drained,several times,but came back and kept my face swollen for a couple of weeks. this caused my lower eye lid to droop. also my eye has actually finished up bieng higher than my good eye.
the double vision has got worse and my eye has become very sensitive to daylight light.
The upshot is the metal implant will have to be removed and possibly a less ridgid implant fitted instead.
My eye lid will also have to be altered while this second procedure is done.
I was always told that there are risks and no garrantee’s with this type of
proceedure.
I have had prisum’s fitted to my glasses which is a tempory fix to help with the double vision.
As well as having a rare condition, my reaction to the proceedure is also unusual, and its very disappointing.
After nearly two years from the first signs of my leye looking different to today, its seems unfair that things have turned out the way they have.
bieng positive,I’m sure the excellent team of surgeons and nurses that I have been under Will achieve a good outcome.
May 30, 2014 at 2:25 am
Oh my, Alec, I’m so sorry for what you’ve gone through. It’s awful.
Sometimes our bodies reject things. My surgeon initially attempted to use bone from my lower cheek as the material to prop up my eye so that it would be as natural to my body as possible (this was in the early days of SSS surgery), but he wasn’t able to make that work and switched to plan B during the surgery, which was to use some kind of other material (not metal; I can’t recall what it was since the surgery was over 10 years ago).
Over a decade later my vision is fine and my eye looks fine (knock on wood). It was a tough time, though, especially the first couple of weeks. I know it’s helpful to keep a positive attitude and I really hope that the non-metal implant works much better for you. Still, it’s OK to recognize that what you’ve gone through sucks. Please know that we’re pulling for you.
May 30, 2014 at 9:30 am
Thanks for your comments. Hope to have an update later this year
May 30, 2014 at 8:42 am
Alec,
I am so sorry to hear what you are going through, that is absolutely terrible. I know that with metal implants the chance of rejection is much higher than having plastic medpor implants. I’m not sure where you’re located, but if you’re close to NYC, I would highly recommend seeing Dr. Albert Wu at Mount Sinai. If you are going to stay under the care of your current surgeon, I suggest you ask about lower lid stitches when your implant is replaced. When I had my orbital floor implants placed (they needed to put 3 in to bring the globe up and forward) my surgeon put 4 stitches, strings essentially, along the edge of my lower lid. I had to have them pulled up like guitar strings and taped to my forehead for 1 week post-op; this helped to pull up the lower lid and help it heal properly. I would take the strings down 3-4 times a day to clean the eye and put tobradex drops in, and then tape them back up. It was not the most comfortable process, but it was completely worth it. Wishing you the best of luck.
May 30, 2014 at 9:27 am
Thanks for your kind words of encouragement. Will up date when my corrections have been done
July 15, 2014 at 11:02 pm
Hi,
I’m a 40 year old woman who has been diagnosed with SSS. I’ve had problems since the birth of my child 4 years ago. I also have a degree in biology with emphasis on anatomy and physiology. I am currently in another program for Medical Laboratory Science. So, I have a higher than average understanding of the human body.
Initially, I had swelling of my eyelid and cheek. I was mis-diagnosed with an eyelid disease called blepharitis, which is pretty much untreatable and why I’ve had this problem for so long. Eventually, the sinus symptoms sent me in for a CT and the blockage was discovered. At a pre-op to clear the maxillary sinus, I insisted on an explanation for the eye problems and the first surgeon finally noticed the change in my eye orbit. He asked if I wanted to be referred out and I did, which led to the “expert ENT” and my SSS diagnosis. But, I’ve been dealing with the problems associated with it for years now. Over time, I simply adopted some home remedies that kept the symptoms under control, believing all along it was blepharitis. I thought I would share them for those that might need some relief until they can have surgery.
First, my symptoms have been on just one side of my face and include eyelid swelling, cheek swelling, dry eye and orbit strain/pain (which I understand now is from the pressure). I have some blurring of vision in the affected eye sometimes, but no double vision. My current ENT specialist is at Oregon Health and Sciences University. He did not mention the need for orbit reconstruction, so either my case isn’t as severe or he’s waiting until pre-op to discuss it. But, if I do not use my home remedies, it is very painful and the swelling and eye appearance changes are extreme enough to be noted and commented on. But, for the most part, I’m the only one that notices the change in my eye with my home remedies. I don’t know if they will help others, since everyone seems to have slightly different responses to SSS, which makes sense since we all have different bone structure and immune responses, but I wanted to share them in case it helped anyone.
First thing when I wake, I use a warm eye pack with a wash cloth warmed as hot as I can handle with tap water. I lay the washcloth over both eyes and my nose. I go back when the wash cloth cools and heat it up again. I use it probably for 10 minutes. This opens the blood vessels and gets the fluid from the inflammation out as well as opening things up in the sinuses with the steam. Then, if I can, I go for a brisk walk outside for about 30 minutes. This tends to make my nose run, relieving some of the fluid retention and pressure. At every opportunity, I gently blow my nose to get the fluid out. I take a nice warm shower, which produces steam. Again, blowing my nose to get the fluid out. This sets me up for my day and my eye will be normal. As the day goes on I will use a lubricating or steroid eye drop if needed. I try not to use the steroid eye drop often as it can have adverse affects on the eye, but if you need to, ask your doctor for a steroid eye drop or oral steroids to remove the inflammation. Before bed, the warm pack and eye drops. I also take a Benadryl, which reduces the inflammatory response.
What you’re after is any decrease in the pressure. Any additional pressure added to the vacuum is going to cause worse symptoms and damage. Avoid elevation, flying, swimming and recognize that a change in barometric pressure from the weather can hit your face like a brick with added pressure. Inflammation is a natural response by the body, but the inflammation adds to the pressure, so you want to decrease that inflammation as much as you can. I hope this helps, and I will post when my surgery is scheduled and I have a pre-op.
Thanks to everyone that posted prior. Some of it is scary, but I would prefer to know what I’m looking at regarding surgery, recovery and possible needed reconstruction versus walking in blind. I have some questions for my expert at our next appointment! Good luck everyone!
July 27, 2014 at 12:40 am
Hi all, I had SSS treated surgically in Feb (eye and sinus) and I was given the green light to ride in planes and continue exercising. However, I’m going to six flags tomorrow and didn’t even think about how the G force from a rollercoaster could impact the new orbital floor implants under my eye. Has anyone ridden rides after surgery? Figured it’s better to be safe than sorry. Hope you guys can help.
September 23, 2014 at 7:43 am
Hi Mar, Linda And Carolyn.
Just an update regards to my SSS.
I had my corrective surgery last week and things are looking so far so good.
I had my metal implant removed as planned, as it didn’t help with the double vision.The medical team decided that a plastic plate wasn’t needed as the scar tissue under the eye put the the eye back into a better position, and it looks and feels almost normal again.
My double vision seems to have almost gone and the swelling that I have this time is very minimal.
I had two string like stitches stuck to my forehead for three days and that has
allowed the lower lid to heal nicely.
Its been a long and difficult road to get to this stage, and it looks like I finally
will be back as I was over 2 years ago.
thanks for all the support and kind words.
Alec
September 24, 2014 at 4:48 am
That’s a wonderful outcome, Alec! I’m glad your doctors were able to go plateless. The fact that you had minimal swelling probably means your body is very happy.
Thanks for the update. You’ve gone through a lot to get to this point, but it’s finally here. Give yourself a high five :).
September 24, 2014 at 11:26 am
Does anyone know an occuloplastiy (?) surgeon in the Denver, CO area?
April 5, 2015 at 10:36 pm
Well, I’m replying to myself, but I hope that what I say may help others.
In August, 2006, Dr. Hepworth operated on my SSS. We thought it would correct my double vision which I had been plagued with since 2003. A few days here and there after the surgery, I could see perfectly, but then it went back to double vision, again. I sought help from eye doctors at the University Medical Center, from a neurologist, but no one could answer why I could not see correctly. I went to a behavioral optometrist and took therapy for a year. She prescribed glasses. I went to the Peace Corps for two years, and my eyesight regressed even with glasses. I found this blog and decided I would look for a occularplastic surgeon upon arriving home. Then, I thought, why not an eye muscle doctor. In August, 2013, I made an appointment with an eye muscle doctor. He told me I was in the “margin of error” and prescribed glasses. Now a year and a half later, I am still seeing double with glasses. (not as badly, but not good) I made an appointment with Dr. Popham, and occularplastic surgeon. He said, he wanted me to made an appointment with one of three people at the eye muscle surgeons office. They had already told me I was in the margin of error, but I did make an appointment with Dr. DeSantis. She said my eyesight had worsened and she could help me. WOW A week ago I had the surgery. I can at last, after 12 years, see almost normally. It will take a little more time for my eyes to adjust, but I’m writing this. As of today, I have a theory about it. In 2003, the SSS infection was pushing up on my left eye, causing vision problems. I was driving to Oklahoma in 2004 or 2005 and something fell down on the back of my tongue. I spit it out and drew a picture of it. It was about the size of a lozenge. For about three months, I did not have double vision. Remember, I did not know what was causing my vision problems at the time. 2006, a dentist at the dental school said he thought I should see an ENT. I did and he is the one who diagnosed the SSS and removed it. When my double vision returned we were both surprised, but the doctor said it had become so bad that it had crept up to my tear duct. He had to remove everything including the fibers that criss cross in the maxillary cavity. So, I think that my double vision returned because the eye orbit was sinking and turing inward. It has been a long journey, but I’m very happy today!
Thanks to this blog, I had ideas of how I might get my eyes back to normal, and in the process it has happened.
September 24, 2014 at 8:44 pm
I have been diagnosed with SSS after going in for CT Scans and MRIs due to headaches and tinnitus. My ENT thinks the discovery of SSS was an unrelated lucky coincidence, but I am less certain of that. Has anyone else with SSS suffered with headaches similar to a tension headache (starts at back of head moves over the eye on one side) or tinnitus (ringing in the ears)?
I’m sure I will be back to discuss experiences with surgery as it is likely I will be needing it. My vision in the affected eye has deteriorated over the last two years. I’m awaiting an appointment with the Ophthalmologist.
Thanks everyone for sharing their experiences. There is not much info available on SSS.
September 24, 2014 at 10:46 pm
I never felt anything with my SSS. That’s why it is called Silent. After an MRI my doctor asked if I had a sinus headache. I said not that I know of. Of course it kept growing up to my tear duct before I finally had an ENT doctor look at it. The reason I went to an ENT was because my dentist said if I was seeing double and my sinus looked clouding on the xray I should see an ENT. That’s when I found out it was SSS. I can’t say yours isn’t. I’m only giving you my experience.
September 24, 2014 at 11:20 pm
Hi Ellie,
Thanks for the reply. Although it needs to be confirmed, I think the diagnosis of SSS is correct. Over two years vision in my left eye has deteriorated and often seems slightly double. Over the same time, I noticed the asymmetry of my eyes in photographs, the affected one being wider. I can also now see that the affected eye is substantially receded in the socket. Easily noticeable. My affected eye feels different and I can see my brow and cheekbone in peripheral vision. I just never put all of this together as having one cause. I’m at an age where my appearance and vision would change naturally. Just thought I was getting old and ugly.
The headaches and tinnitus started three months ago and this is what prompted the investigation. So far, the diagnosis is tension headaches as other causes are not apparent, but as the tinnitus and headaches are on the same side as the affected eye I have to wonder.
Thanks again for your reply
Jeff
December 29, 2014 at 4:53 pm
An update. I am scheduled to have an endoscopic antrostomy and uncinectomy. I understand the need for the antrostomy to unblock the maxillary sinus, but am wondering why removal of the uncinate process is indicated. Of course, I’ll be discussing this with my surgeon.
Did people having surgery who have posted here only have the antrostomy or both procedures?
December 29, 2014 at 5:05 pm
This was from me. I pressed the enter key too soon. Please see my full post below.
October 4, 2014 at 9:07 pm
Hi all. In April of this year my sinus and upper jaw were sore. I went to the clinic and was told that I had a sinus infection. I took antibiotics for 10 days and the symptoms went away. 2 months later, within what seemed like a week, my right eye had dropped and moved back noticeably. Went to see my doctor.He gave me more antibiotics, sent me for sinus xrays and a CT scan. He then sent me to the neurologist. The neurologist sent me to an opthalmologist. He said my eye was fine and he sent me to another opthalmologist/surgeon. He was the doctor that told me he believes I have SSS . He has since referred me to an ENT whom I will be seeing in November. The CT scan showed that the sinuses on the right side are plugged up and need to be drained.
The Canadian medical system is dreadfully slow and I will be glad to finally see the ENT to get the ball rolling.
One thing I have not read about here is the use of nasal rinse (Hydrasense)
Because I did not want to wait and do nothing, I tried Hydrasense medium spray on the right sinus. At the risk of offending anyone here, I blew my nose afterward and had a clear bright yellow string of mucus hanging out of my nose. Sickening I know. As I pulled this string out I could fell it applying suction under my eye. When it released, my eyesight was affected for a few minutes. It felt like my eyes weren’t working together (like seasickness)but it quickly returned to normal.
I don’t know if the nasal rinse helps ,but for me, I think getting that large volume of infected mucus out of my sinus may have bought me a little time. I have continued to use it and have not been able to blow out any more infected mucus.
One more month to wait.
December 20, 2014 at 3:02 pm
I appreciate everyone who’s taken the time to share their experiences. My diagnosis happened pretty fast. I was not aware of any symptoms at all, but the technician at my routine annual eye exam (three weeks ago) noticed a slight asymmetry between my eyes. She brought it to the ophthalmologist’s attention, who gave her great credit because he said it’s slight enough that he may not have noticed it. He initially thought my left eye was proptotic and wanted my family doctor to check for thyroid/adrenal disease and to run a CT scan for possible tumors, etc. The CT scan, though, showed an opacified right maxillary sinus, deformity of the orbital floor, etc. (no tumors!)—textbook SSS, it seems. I saw an ENT yesterday, who is going to perform the sinus surgery early in the new year. Expectation is that no orbital floor reconstruction is necessary because the deformity is still fairly small.
Part of me is reluctant to have the sinus surgery, which sounds like some significant discomfort for something that is basically giving me no symptoms. But I’m grateful the eye tech noticed it—she may have saved me from needing something more significant down the road.
I’ll plan to update as things progress.
December 29, 2014 at 5:02 pm
An update. I am scheduled to have an endoscopic antrostomy and uncinectomy for my SSS. I understand the need for the antrostomy to unblock the maxillary sinus, but am wondering why removal of the uncinate process is indicated. Of course, I’ll be discussing this with my surgeon.
Did people having surgery who have posted here have only the antrostomy or both procedures?
Did your surgeon discuss the two procedures and why only one or both were was necessary?
I’ve read some horror stories of people ending up with permanent nerve damage from endoscopic sinus surgeries and really want to do only the minimum necessary to correct my SSS.
December 29, 2014 at 5:36 pm
Hi Jeff,
I had my SSS treated almost one year ago. One surgeon went through the nose and removed bone to open up my right maxillary sinus, and then the sinus was cleared (since it was filled with mucus due to the collapse). Then, another surgeon placed three implants under my eye due to the absence of the orbital floor.
The sinus portion of the surgery was the easiest recovery; post surgery I was expected to netty pot every day to keep the sinus clear and prevent infection. After 1 month, using the netty pot was no longer necessary.
I still have not regained all feeling on the right side of my face just yet, but that is due to the orbital floor implants, not the sinus portion of the surgery. However, this is a very manageable side effect of the procedure, which was much needed.
Be sure to ask your surgeon as many questions as possible so that you have a full understanding of the procedure. Ask how many of these surgeries they have done, and if they are familiar (or have treated) SSS. I was lucky to have found 2 surgeons that had treated 3 cases of SSS previously, and they did an amazing job.
Best of luck to you!
December 29, 2014 at 7:06 pm
Hi Mara,
Thanks for sharing your experience.
Although I still have to have a follow up appointment with the Opthalmologist, at this stage we are not discussing implants.
The antrostomy is to unblock the maxillary sinus. The ENT says mine is blocked with bone.
The uncinectomy is to remove a piece of cartilage in the nose that is not necessarily involved. It is often performed for people with chronic sinus blockage problems.
Eyewiki indicates that the uncinectomy is not always necessary for SSS.
Once I have the discussion with my surgeon I will write an update.
Best wishes for your continued recovery!
December 30, 2014 at 4:08 am
hello all I had my surgery done about year and half ago now but not have the orbital floor disc put in as the dr said it’s too risky and my sight is fine.
I live in South Africa in Cape Town and neither my ENT or other Drs have heard of SSS. so I was almost like a “test”
this all happened while I wS pregnant with my first child. in 2011.
last year I went for another chech to make sure everything was clear as I was scared something would happen as I was pregnant. and all was clear.
my eye gets tired sometime which makes it look very hollow but luckily I wear glasses so its not too noticble.
anyway.
good luck all.
January 7, 2015 at 9:36 pm
I asked the surgeon to describe the two procedures they will be performing.
This is my understanding of what he tried to describe to me in layman’s terms, so please take with a healthy dose of salt.
The uncinectomy is to separate and remove a piece of the uncinate process which is a bone that can cover the maxillary sinus opening. There is meant to be separation between the sinus opening and the uncinate process but most people with SSS have it moved up against the sinus opening, blocking it. Apparently it is achieving this separation that is the tricky part of the surgery because it is near the delicate bones in the eye orbit. It takes very little force to fracture the eye socket here.
The antrostomy is to enlarge the maxillary sinus opening and clean out the fluid in the sinus cavity.
I’m really starting to notice that the affected eye feels different. It feels tired or droopy or even a little painful sometimes. It’s interesting that I do not have a lot of visible asymmetry yet, despite the huge difference of the sinus and orbits you can see in the CT scan.
Anxiously awaiting my surgery which I expect will be in the next 60 days.
Cheers
Jeff
January 8, 2015 at 6:11 pm
Hi Jeff,
That is the exact procedure that I had done in February 2014. You mentioned that your eye feels different – it is likely that the orbit is sinking further into the sinus cavity. Will an Oculoplastic surgeon be present during the surgery? In order to lower the risk for vision impairment and complications in surgery, an Oculoplastic surgeon MUST be present to oversee and assist in the process to protect the orbit.
If you have only met with an Opthalmologist, you should see if they can refer you to an Oculoplastic surgeon right away. In my case, I met with an Opthalmologist first (who ordered the CT scan, which concluded in the SSS diagnosis). I then did my research (and asked around) and was directed to an Oculoplastic surgeon. He had treated SSS 3 times previously with implants, so he then referred me to an ENT who was also experienced with SSS, and would be able to collaborate with in surgically treating the condition.
Wishing you all the best!
January 10, 2015 at 12:54 am
Hi Mara
Thanks for the reply. I agree that my eye may be changing. It seems more noticeable. My tinnitus is increasing, too, but still none of the doctors thinks it is related.
My ophthalmologist is also an occuloplastic surgeon. I will be seeing her in three weeks and will discuss changes and also the implants and her presence at the surgery. When I last saw her she was thinking the implants may not be necessary.
I’ll be back here with an update.
Cheers
Jeff
January 10, 2015 at 1:03 am
I have a question for those still reading the thread here. How many of you suffer from trouble equalising your ears when you fly? How many of you used the Valsalva Maneuver which is where you force air out while pinching your nose and closing your mouth?
I ask because I had a thought that this could be amoung the causes of the condition. You create a negative pressure in your maxillary sinus when you do the Valsalva Maneuver. Unlikely I suppose, but I thought I’d ask.
Kind regards
Jeff
April 5, 2015 at 6:48 pm
Surgery to open my left maxillary sinus was done April 1. Despite April Fool’s, everything went extremely well. The surgeon said it was straightforward and not as difficult as he expected.
He must have removed very little tissue as I have had almost no bleeding or pain. I didn’t require any packing. I’ve had more trouble with my throat as they must have scratched my uvula a bit with the breathing tube.
My surgeon was Damien Phillips at ENT Surgeons of Melbourne.
I’ve got a follow up in six months with the occuloplastic surgeon to discuss implants.
For future sufferers of SSS that find this web page, I give this advice: don’t fly until surgeons have opened your sinus. Changed symptoms were evident 1 to 2 weeks after flying. Headaches, occassional pains in the cheek and eye, etc. I’m certain flying accelerates the deterioration. I wish I had received advice not to fly.
April 6, 2015 at 5:48 pm
Hi Carolyn and All.
Just an update to my journey in having sss and having the surgical procedures.
As I mentioned earlier the metal implant I had didn’t help ,and
Its just over 6 months since I had the metal implant removed.
the double vision hasn’t gone totally although its much improved and I only get it in the evening but not every day, Really depends on how tired I am.
The eye is in the right place now and it looks like it use to before the on set of sss .
My eye lid has been corrected and its not droopy any more and looks just like my good eye.
I didn’t have problems with flying like you jeff although we all seem to have varying symptoms to this complex disease.
the up shot is that I think my possible treatments are now at an end.
My E,N.T consultant has told me that the sinus has closed over again and I may have to Have it opened if things change.
This blog has been a terrific way to understand, and exchange views on sss.
Thanks again carolyn for setting up this wonderful blog and giving us all such support.
As most people feel very self conscious about how their eyes look , sss
can really make you feel down, and its good that you can relate to others going through the same thing. It helps to know that it can be treated, and
lots of positive outcomes are achieved.
Regards
Alec
April 21, 2015 at 1:15 am
Aloha Carolyn, thank you so much for this blog! I diagnosed myself w SSS from a YouTube video from a Professor at the University of Michigan. I am now on a journey to find an ENT doctor in Hawaii that has experience w SSS and can officially diagnose me. If not, I may make the trip to Johns Hopkins to see your doctor..thank you again for helping me and so many others who have this disease. Mahalo, Ivy
May 14, 2015 at 6:32 pm
I’ve had my six week post surgery follow up. Before saying anything the surgeon expressed surprise at how my appearance has improved. I had thought so too, but it is good to know I’m not imagining it. I’ll try to post a link to before and after photos.
If you are uncertain about the implant procedure, you may wish to wait if you are not having vision issues. You may recover much symmetry through the FESS surgery alone.
Thanks Carolyn for sharing your experiences.and maintaining this space for others to share. Without it, I would have had very little to go on!
October 6, 2015 at 12:03 pm
Carolyn, How incredible this site has been for me! Such a long journey! Had the SSS surgery 6 months back at UCLA Dr. Marilyn Wang and three months ago I noticed when I walked my upper molar hurt. Went into ent and they took out scar tissue up in my sinus area. Felt better and then two weeks ago I noticed a bad smell when I sniffed up. Went back in and now they pulled out a cyst!!! CRAZY! Has anyone had any bad smell when they sniff?
Also- my regular eye doctor is an idiot and keeps telling me to just wear glasses with a prism in it! He has never treated anyone with SSS and does not understand the impact of the eye from it! I want to go to Jules STein eye institute but my insurance wont approve it! So frustrated. Anyone know a doctor in the San Fernando Valley who has an opthomologist that understands and has treated the impact of SSS on the eye?
October 6, 2015 at 1:45 pm
Back in 2012, I believe, I found your blog. I read many comments and made some comments. I was in the Peace Corps at the time, wearing glasses to correct the double vision which continued after the SSS operation to remove the infection. When I came back to the States, I contacted some eye muscle surgeons. They said I was in the margin of error and could not operate on me; change of prescription. Time went on. I felt that my left eye (above the sinus cavity where all the infection was removed) was getting worse. I went to an ocular plastic surgeon who sent me back to the eye muscle surgeons. I made an appointment to see one that was recommended. She told me she could help me because my eye had indeed moved further toward me nose. On March 26, 2015, thirteen years after my double vision began, I was able to focus correctly. It was a long journey, but I’m grateful that someone was able to help me. The doctor tweaked muscles in both eyes because I have always had a slight turn in on my right eye. Thank you for your blog. By reading it I was able to start asking questions of doctors who finally were able to help me.
November 10, 2015 at 4:22 pm
I’m amazed at how many results are returned in search engine queries for “silent sinus syndrome” these days. My have times changed. I wanted to share one page that does a nice job of encapsulating SSS and features helpful pictures: http://eyewiki.aao.org/Silent_Sinus_Syndrome
January 7, 2016 at 1:15 pm
Yes, I have daily migraine/pressure headaches pretty sure due to diagnosis of sss, having surgery next week so wish me luck with both 🙂
May 17, 2016 at 2:02 am
Hi. My name is Linda & I live in Hamilton New Zealand & I am 46 years old. I was diagnosed with SSS 9 weeks ago after having a CT scan to investigate my sunken right eye. I have been told that I will have to have surgery to clear my blocked right sinus. I have had a bit of trouble with double vision when looking to the side & upwards & sometimes just generally blurry vision particularly at night time when I am tired but don’t have this all of the time. I can’t wear my contact lenses much anymore because they get too uncomfortable. I am still waiting to see an ENT specialist to find out when I can have my surgery. It’s a little bit frustrating here, I don’t have medical insurance so am going through the public health system & the hospital are mucking around a bit. My biggest concern is that I am booked to go on a holiday with my mum & daughter to Malaysia to visit my brother & his family who have moved there for 2 years on a teaching contract. It’s a long flight & I have read a few posts that say I shouldn’t fly as it could cause more damage. I can’t cancel my trip & the way things are going I won’t get to have my surgery before I go. I would really like to hear from anyone who has flown prior to surgery to see what the symptoms are.
September 1, 2016 at 7:47 pm
Hi, I’m Ritza, I’m 24 years old and I believe I have SSS. I don’t have a history of sinus infections, but what’s causing me to believe I have SSS is my sunken left eye. As I recovered from lasik eye surgery in june 20th of this year, thats when it started sinking in. I believe I have mild enopthalmos. It’s really causing a negative impact on my self esteem and my lasik doctor, nor two other opthamologists gave me the time of day when I told them my left eye is sinking in. I don’t know how to proceed…
September 7, 2016 at 9:02 am
Hi Ritza, hang in there. My suggestion is to go to an ENT (otolaryngologist). Ask them if they have heard of Silent Sinus Syndrome. I remember how frustrating it was when multiple doctors told me that “no one is perfectly symmetrical.” I finally printed out a bunch of “before” and “after” pictures so that I can show them how previously, my eye was fine, and then in later pictures, there was an obvious wideness. Those pictures really helped my case to get the ball rolling.
September 7, 2016 at 12:02 pm
Hi Ritza,
In my case, I had no sinus infections and was not aware that my sinus collapsed until a CT scan was done. My optometrist told me the same thing that doctors told you and thought I was being superficial. I took it upon myself to go to an Opthamologist and when he examined me I tipped my head back – it was then that it was VERY apparent that my eye was sinking significantly. I came prepared with before and after pictures as well which then helped prove my case. Push for getting a CT scan and you’ll then get your diagnosis and can then proceed with treatment.
Good luck!
September 13, 2016 at 7:03 pm
Hey, thanks guys! (Caroline & Mara) so today I had an appointment with my ENT and an opthamologist who also is AORSP certified in Oculoplastic surgery. They BOTH approved the prescription for my CT scan and I will be heading to the radiology center on Thursday. The opthamologist said I have about a 1mm difference and that thats not sufficient enough for surgery due to the risks involved. At this point I hope it’s my sinuses so that I can endoscopic surgery and my eye can reposition itself back into place. I know I sound so vain for worrying about 1mm but I’m young, I’m a female, & I really loved my eyes b4 so its very hard to accept :(. I really pray that I can resolve this and have my eyes aligned as they used to be.
September 14, 2016 at 9:09 am
Don’t worry Ritza, you don’t sound vain at all! You have every right to want to look the way you did before SSS. Stay positive and things will work out the way you want them to 🙂
September 27, 2016 at 9:48 am
Hi guys, so I have endosopic surgery on October 4th. I’m a little worried about it, but the possibility of my eye reverting itself back to normal is the maiin reason why I’m doing it. I’m really set on popping this eye back to place. How long did it take for your eye to position itself?
September 27, 2016 at 3:28 pm
Hi Ritza,
I initially was supposed to have the sinus surgery first; the surgeons wanted to see if it would bring my eye somewhat back into it’s original position. However, it’d sunken so much into my sinus cavity by that point that they decided the day of surgery to reconstruct the sinus and place in orbital floor implants all at the same time. Everyone’s case is different – I think it all depends on how far along the condition is as far as the eye being naturally lifted back into place once the sinus is corrected. Let us know how it goes on the 4th – good luck!
September 27, 2016 at 4:16 pm
Hey Mara,
Thanks for the quick response and being so helpful and attentive through this journey! My eye hasn’t sunken too far back, only a millimeter thus far but boy does 1mm really make a difference to one’: self perception of their own face. I really hope my eye reverts on its own, because I don’t think any oculoplastic surgeon would want to perform the orbital floor implant surgery on me due to my case being very mild although apparent. Where do you live by the way? And who performed the orbital surgery on you if your don’t mind me asking. Is your eye back to normal now?
September 27, 2016 at 4:41 pm
Hi Ritza,
Of course! I know how scary, confusing, and difficult the process can be when not many people have knowledge of SSS.
I live in NYC and was fortunate enough to have a colleague refer me to see Dr. Albert Wu at Mount Sinai. The man is an artist at what he does – he did an incredible job and had to stack 3 implants on top of each other to bring the eye up as much as possible. Of course there is a slight difference in my SSS eye and my other eye, which is mainly the fact that there is no longer “fat” under my SSS eye (which no one notices, and only I notice when I smile but it doesn’t bother me). Honestly, people thought that my “normal” eye was the one with the implants — that’s how great a job the surgeon did.
Be aware, however, that there are risks associated with the orbital floor implant surgery. I have sensitivity on the side of my face that was operated on, which has become the new normal. It could be because the implants are putting pressure on a nerve, but nonetheless I am happy with the result and would take nerve damage or sensitivity over a sunken eye any day!
September 27, 2016 at 4:57 pm
What are the odds Mara! I live in NYC too! I” having my sinus surgery with Dr. Isaac Namdar. I remember trying to make a consultation with Dr. Albert Wu but they didnt accept me because he doesnt take my insurance :(.
January 25, 2017 at 11:53 pm
Hi everyone! Looks like I’m a little late to the party. Just got diagnosed with SSS today and don’t know where to start reading about it. Until I came here. All of the search results obviously are medical articles and yada yada ya. But this page/posts make it so much more real!!’ Thank you!!!
And, trying to read most of these other comments makes me feel not so alone.
Has there been any correlation with pregnancy ‘speeding’ up SSS?
Next step is to contact Loma Linda Hospital in Redlands, CA.
BTW-my ENT doc has never had a patient with SSS. Until now ☺️
January 29, 2017 at 6:50 pm
Hi everyone I’m from the U.K. And have recently been diagnosed with a form of sss.
My sunken eye was first noticed in the third day after giving birth to our third child in June 2016.
I went for Ct scan and was later told scan looked comoleatly normal. But I knew it wasn’t. So went privately n persued it. This next consultant took one look at my Ct scan and noticed the bowing in my orbital floor and blockages in my top sinuses and about 30% in my nasal sinuses n thickening in my maxillary sinus. To cut a long story short. I’m going to have an operation soon which involves removing bone inside my sinus which seems to have fused to something called a heller cell on the orbital wall. Apparently the negative pressure should be then gone and I’ll then leave it to see if my eye slowly reverts itself. I’m papping myself (British term for crapping ones self!! Lol) to say the least. So any support and words of wisdom from experience would be much appreciated? Thank u 😬
January 29, 2017 at 8:01 pm
Good luck, Katie & Brooke. I am glad that my blog continues to be a resource for people with SSS. I hope everything works out. My sinus surgery wasn’t as complicated as having to remove bone. They just stuck a probe up into my nose and sucked out whatever was in there. I was lucky that my eyeball went back to normal after the sinus surgery so I didn’t have to have the orbital reconstruction surgery.
January 30, 2017 at 12:16 am
Brook…. don’t crap yourself! Lol. All will be ok. I had the sinus surgery in 2010 with very little discomfort and my eye was normal nearly right away after. You’ll look back a few years from now and it will all be a distant memory!
April 20, 2017 at 3:45 am
Hi Carolyn, I came across your blog recently and have found it very helpful. It is interesting to hear about other peoples problems with regards to SSS as I was diagnosed with it in 2014.