“Silent Sinus Syndrome”


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.

I had my last follow-up appointment with Dr. Andrew Lane at Johns Hopkins otolaryngology dept today. He said there is no more swelling, and my sinus looks like a normal sinus now. (more…)

The opthalmologist appointment on Thursday went pretty well. He basically confirmed that my eyeball has sunken. He pulled up the images from the CT scan (more…)

I don’t want to go into too much detail about my appointment today. Basically, the swelling has gone down. He said everything is looking pretty good, (more…)

Last week’s 1-week follow-up went by without a hitch. He looked up my nose, said everything was looking pretty good, gave me instructions to rinse out my sinuses and sent me on my way.

Today was my 2-week follow-up. (more…)

Well, Clint’s blogged about my surgery here: http://clintjcl.wordpress.com/2007/02/12/medical-carolyns-surgery-was-a-success/

All in all, I’m very surprised at how little pain I feel. (more…)

I do not need a biopsy based on what the CT Scan showed. Just regular sinus surgery, which is scheduled for February 12th.

5 days before my surgery, I’m going to be on antibiotics, and a steroid medicine. (more…)

So, I went to Johns Hopkins hospital today for a final answer on whether I have silent sinus syndrome, and whether it requires surgery. (more…)

Basically, the Doctor I went to today said I do need sinus surgery, sooner rather than later. He said we need to find out what is inside that sinus. He said a minimal chance it could be cancer. But because it’s only on one side, that’s not normal so they need to do surgery and a biopsy. (more…)

So, I had my ENT (Ear, Nose, and Throat) Evaluation today. I kept telling them every little thing I could think of to help them (I even told them how I have narrow ear canals and get wax buildup and how I have TMJ, but I think it was caused by being rear-ended several years ago…). (more…)

My medical records from the neuro-opthalmologist mention “Silent Sinus Syndrome”. That’s what the CT Scan was looking for. I probably would have had this answer sooner if the neuro-otphalmologist didn’t drop my insurance. Looking it up online has seemed to give me more answers than anything else so far. If you want to see some of the articles I found, they are on my del.icio.us at http://del.icio.us/CarolynCASL/health

I tried to call Dr. Perez, my primary care physician, to get a referral to an otolaryngologist. Unfortunately Dr. Perez is not in the office until next Monday. So I will just have to be patient and wait. I probably could have talked to the other doctor, Dr. Azizi, but I prefer Dr. Perez.

I’m getting pretty sick of my eye issues. After Dr. Snyder dropped my insurance, I made an appointment to go the opthalmologist that my coworker suggested. I had my appointment this morning. I went to Dr. Snyder’s beforehand to see if they can give me my records, but they weren’t ready. I did give them my payment, so they’ll be mailing them once they are copied.

On Thursday, I saw the retina consultant about the flashy spot in my eye, which is getting better, and is only noticeable when I blink really fast. (more…)

The neuro-opthalmologist that I was supposed to go to for a follow-up appointment after these other appointments has decided to drop my insurance. Lame!!!! I called them back to request my records, and they are charging me $5 + $0.10/page. Double lame!! Hopefully I get those soon.

I have an appointment on Monday to see an opthalmologist that my coworker has recommended. Starting from square one. Great. Wonderful. Just what I always wanted to do.

Welp, I went to the neurologist to follow up on that visual response whatever test. I told her about the CT Scan and the CD, and she called the front desk to get the results from the CT Scan. The visual response test was normal and fine. As for the CT scan results, the thing about my sinus is apparently something I was born with, and not some eroding bone like the technician had thought). The sinus itself is smaller than the other sinus, and therefore the bone is lower, and the floor of the eyeball is lower. She also didn’t know why that would just appear now. I have a feeling when I go to the neuro-opthalmologist, he’s just going to be like “Yup! You have a depressed eye floor, there’s your answer” and stop right there. That was the impression I got from him last time I was there. Even when I said “Why would it only show up now?” and he answered “I don’t know”.

Plus, the wideness has started getting somewhat better. It would come and go and now it doesn’t seem to be as pronounced…. At least when I see it. Clint says it’s still really bad sometimes…. I want Clint to notice if my eye is still open when I sleep, or if that seems to be getting better too. I need more pictures recent pictures to be taken of me too so I can see if it is still showing up in the pictures (it was actually most obvious in pictures….)

So, anyway, today, it was pretty normal. The lower lid is still more droopy and the upper lid is still higher up, but it has a look of being more symmetrical. So the neurologist was like “oh, it’s getting better. You probably don’t have to worry about it anymore”. Except for the retina thing, which actually is getting better. I have a feeling that thing is going to be completely better by the time my appointment rolls around on the 21st. Of course, it could also be that my brain is compensating for it and that’s why I don’t notice it as much. I only notice it for a split second after opening my eye. So to really see it, I need to blink my eye several times, and then i’d be like ‘yup, it’s still there”.. And it’s not a glaring spot on the paper when I am reading. So who knows…

So, anyway, after my retina consultation and the neuro-opthalmologist follow-up, I may just throw in the towel and accept that 1) I will never know what’s wrong with me and 2) I know it’s not something they know is bad and 3) at least it’s not getting worse. I will just have a wide-eye for the rest of my life, because frankly, I’m tired of this crap. And maybe, just maybe, the eye will continue to get better and better and then I won’t have a wide-eye anymore. Maybe! But I guess that really depends on what the neuro-opthalmologist and the retina consultant say about me. Maybe they will come up with some other scary disease that I will need to be tested for. Maybe I will still say “forget it.”. Whatever mood I am in at the time.. :)

Also, nobody really notices it until I point it out at which time it becomes obvious to them. So I gotta stop pointing it out and talking about it and bragging about my brain pictures :) (Actually, Clint is more guilty of that than me. He’s the one who traps people at a party to force them to watch the video :) )

So, yesterday, I had the CT Scan. The machine seemed pretty similar to the MRI, except it didn’t make all that noise (atari beeps). The technician did the scan without contrast. He came back and told me that he had the radiologist look at the pictures because there “was something in my sinus”. So they wanted to do with with contrast, which meant that they would inject a dye into my system and then do it again.

So, the technician (Randy) took me to the back room and started preparing an IV. He took my blood pressure, and attached this IV to my arm. Then he injected some saline into my system. Dunno what that was for. But then he wanted me to move to a more comfortable room. And I was like “umm, what do I do with this?” and he was like “Bring it with you”. I was like “OK”.. and he was like “oh, sorry. They raise us real smart on the farm.” Before, we were chit-chatting and he was telling me that he grew up on a farm in Illinois. :)

Anyway, I was standing there with this IV hanging out of my arm and his idea of a more comfortable room was a room with a bench and an armless chair. So I really would have preferred to have stayed in the other room so I could just leave my arm right there on the armrest. But that’s ok. Except I was waiting for forever! Like at least a half hour to 40 minutes.

Finally I get to go again. He helped me lie down, and adjusted the head rest and the leg rest. Then he had to come back in and adjust me again because apparently he did it too much before. When he injected the dye, he warned me that I was going to feel really hot inside. He said it usually starts in the back of the throat. For me, it was more around my nose and face that I first notice the hotness. Then it started spreading through my body, and I was just kinda smiling. Then he said “It’s going to feel like you are urinating, but, I promise you, you are not”.. and then it did feel like that. It was very warm in that area. Weirdest sensation ever. I was trying hard not to laugh. But I couldn’t help smiling about it. It was hilarious.

He had told me that he was going to give me a CD with the images that I can take with my to give to my doctor(s). So once I knew I was getting that, I wasn’t going anywhere without it. That meant I was waiting an extra half hour (he said it was going to take 10 minutes, but apparently when the next patient went into the machine, it pushed my pictures back so he couldn’t access them until that patient was done). But now I have the images.

I played with the images a bit yesterday, but I really couldn’t tell much from them because I don’t know what I’m looking at. The bonus is the MRI images from 5/8/06 were also on there.. Yay! But these pictures are definately weird and definately kinda freaky.

I saved a couple but I am not sure I want to upload them for all to see.. Part of me does, but the rest of me thinks it’s too weird. Let me know if you think I should display the pictures or not.

So, today I started out at the neurologist for the Visual Evoked Response test. It involved hooking electrodes to my head and having me sit and stare at a red dot surrounded by a black & white checkerboard pattern that would flash around trippily. While doing the right eye (which she did MUCH more than the left eye), she suddenly started asking me these questions. Like “What’s an animal that starts with C?” and “What’s a reptile that starts with A?”. Then she asked what county I live in, and later asked me to give my home address. Then she asked if I had any kids, and when the answer was “no” she was like “That eliminates a whole group of questions I was going to ask you”. So then she asked if I had any pets and asked me questions about Misfit.

So, anyway, she said the results for that won’t be back for a week or so.

After that, I went to the deli and had a sandwich and still had some time to kill before my next appointment. I ended up going home and checking out the progress on the construction. They had the whole floor ripped up and were messing around in the dirt underneath. So I went upstairs and watched TV. Suddenly the bedroom door opened, and there was Clint. I was like “What are you doing here?” and he was like “What are you doing here?” so we chilled together for awhile watching TV until I had to leave and Clint had to go back to work.

So, then I went back to the neuro-opthalmologist. He told me he called the MRI Center and asked if the results showed anything about my eye socket. They mentioned there was a difference in the sinus cavity on the right side.. Apparently, the bone or something is underdeveloped or something, and so the floor of my eyeball could be lower… so i asked “Well, why would it just start now and not be like that all along?” and he said he didnt’ know. But i have to get a cat scan to see more detail on that.

The neuro-opthalmologist also looked into the back of my eye because of my complaints about the camera flash sensation. He did see an abnormality in my retina which is probably causing the camera flash sensation. He has referred me to a retinal specialist. He said that seems unrelated to the wide eye. Great. He also mentioned that having the sun reflecting into my face with the mirror in the morning wouldn’t hurt me. Go figure. (That was my theory on the cause of the camera flash sensation. On Monday morning, I awoke to find the sun glaring right into my eyes by being reflected in the mirror. So I was thinking of the horror stories of staring into the sun, and if my right eye was partially open and just having the sun reflect right into it and me not closing it….. )

I asked him if he saw that abnormality last time he looked at my retina, but he said that he didn’t notice it then. He also said he wasn’t looking for it then, so it could have been there. But I’m thinking since this spot has only just appeared on Sunday, it’s a new thing.

So, future appointments:
Need to schedule a cat scan
Need to schedule a retinal consultation
Neurologist follow-up on Sept 5th
Need to schedule a follow-up with the Neuro-opthalmologist after the catscan and retinal consultation.

Needless to say, this really sucks!

Recap:

November 2005 – Optometrist points it out to me, making it painfully obvious from that time on.

December 2005 – Point it out to my family at Christmas making it painfully obvious to them.

January 2006 – Decide to go to the company who did the Lasik, TLC. Because they closed the Fairfax office, and Reston was too far, I went to the Tyson’s office. I was told that my eyesight is fine, I don’t have a lazy eye, and any difference in wideness is because “nobody is perfectly symmetrical”

March 2006 – Took pictures of evidence of the problem to the optometrist office that pointed it out to me. It wasn’t the same lady, but Dr. Miller saw from the pictures that there is an issue. Referred me to a neurologist, Dr. Stone.

April 2006 – See Dr. Stone at the Neurology Center for a consultation.

May 2006 – The first test I had was an MRI to see if I had Bell’s Palsy. Test turned out normal.

May 2006 – The second test was an EMG to see if there was something wrong with the nerves in my eye. Test turned out normal. Dr. Stone referred me to the opthalmologist who did the lasik.
June 2006 – The opthalmologist, Dr. Perraut, said the lasik had nothing to do with the wide eye, and that there wasn’t anything he could do. He suggested I get my thyroid tested. He called Dr. Stone and they faxed over a lab report. I was confused about just showing up at Quest Diagnostics, and I had been wondering if I should have gone to my regular doctor before all this mess.

June 2006 – I went to my normal Internal Medicine doctor, Dr. Perez, to get my thyroid tested. I think they did a T4, and a TSH. My results also mention Thyroid Peroxidase AB and Thyroglobulin AB. I also was tested for Lyme Disease by Dr. Perez. All came up negative. Dr. Perez referred me to a neuro-opthalmologist, Dr. Snyder.

July 25, 2006 – Dr. Snyder looked at me, and suggested Myasthenia gravis, or thyroid eye disease. He referred me back to the Neurology Center with Dr. Kurtske to get a Single Fiber and Repetitive Stimulation EMG/NCS to test for myasthenia gravis. He also sent me to the lab to get some blood drawn, but I haven’t received any tests back from them to know if that found anything.

August 13, 2006 – notice a “I looked at a bright light and I have spots in my eyes from it” sensation in my right eye only. It’s like I had a camera flash go off and it hasn’t faded away. I can see it when I close my eyes (it’s green). It would fade away, but once I open my eyes, it comes back. Have trouble reading papers because of the dark spot impairing words.

August 14, 2006 – woke up to realize that the mirror by the bed was facing me, and the bright morning sun was reflected in it. Could my eye have been partially open while I was sleeping and then the sun was just reflected into it and I was sleeping and didn’t realize it? Moved the mirror. I have been wearing a blindfold, but apparently in the night, I end up taking it off (I believe I take it off rather than it falling off, because it always is on the headboard cubbyhole, and not just floating around the pillows or in the bed.)

August 15, 2006 – Dr. Kurtske did the Single Fiber and Repetitive Stimulation tests today, and they came up normal, so I don’t have myasthenia gravis. Dr. Kurtske suggests the next step is to get a VER (visual evoked response) test done. That is scheduled for Thursday. I had mentioned the camera flash thing, but he’s not sure if it’s related or not.

Future appointments:

August 17, 2006 – Dr. Carol at the Neurology Center to perform VER

August 17, 2006 – Follow-up appointment with Dr. Snyder to go over the results from the myasthenia gravis and blood tests

September 5, 2006 – Follow-up appointment with Dr. Stone at the Neurology Center to go over results from the VER.

So, on Friday, May 13th, 2005, I invested in the lasik surgery. It was performed by Dr. Perraut of Whitten Perraut Laser Eye. It was the same doctor/practice who did Becky’s surgery and Christian’s surgery. After a few months, I was noticing this kind of “offset feeling” with my right eye. I totally expected my right eye to be the one that would have problems if there was going to be any problems. My right eye has always been worse than my left eye (my theory is because I’m left-handed so my right-brain is stronger than my left-brain–I always seem to have issues on my right side – worse eyesight, tmj in my jaw, clogged up ear canal, etc etc).

Anyway, when I was at one of my follow-up eye exams back in November, I mentioned the off-set feeling I was having. The lady told me I have an astigmatism in the right eye, and those take longer to stabilize. Then she looked at me, and said “Hey, that eye is wider than the other eye… that’s strange”.. So needless to say, I went home and looked in the mirror, and HEY! my right eye *is* wider than the left eye. So, then I asked Clint “Do you notice how this eye is wider?” “hey, yeah, now that you mention it, it is wider”… then I see my family for Christmas “See how my eye is wider?” “Wow, you’re right, it is wider”.. People just don’t seem to notice it until the second I point it out, and then it’s painfully obvious….

So in January, I went to a different eye doctor to check it out. I decided to go directly to the lasik people, but during this time, they had closed the office I originally had my surgery done, so I went to the Tyson’s office. The doctor who saw me there told me my eyes are fine, and the “wide eye” is because “Nobody is perfectly symmetrical”… So I was slightly miffed..

Jason took a picture of me in January…. http://www.flickr.com/photos/clintjcl/94788277/in/set-72057594058652618/ Which really showed the wideness of my eye. After I saw that picture, I went through others and gathered a good sample that showed “wide-eye” versus “not-wide-eye”. In March, I made an appointment to see the optometrist office that had who had originally pointed it out to me. I showed her the pictures so she could see that yes, there is a problem, and it wasn’t there before. So she did an eye exam, and other tests to make sure I didn’t have a lazy eye. She was stumped, so she decided to refer me to a neurologist to take a look. She set up an appointment for me for the end of April.

The neurologist was also stumped. She decided the course of action will be for me to have an MRI to determine if it’s caused by a virus attacking my nerve (she mentioned Bells Palsy), or some other nerve thing. If that didn’t show anything, then the next step will be an EMG to find out if it is caused by a problem with the muscles. If that doesn’t show anything, then the next step would be to go to an ophthalmologist for a more specialized opinion….

I had the MRI last Monday, 5/8, and I was just informed yesterday that it was normal. My EMG is scheduled for 5/15 at 10:30am. I was hoping the MRI would show something, because then at least we’d know and I won’t have to keep going for all these tests and what not….. Welp, we’ll see how the EMG goes.

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