[Anonymous]

#1049701

George, how long has it been since youve had your decompression surgery? Has it progressed to this or have you had problems from the beginning?

[Anonymous]

#1147531

I have had two drs. recommend orbital decompression. The head of
opthamology at Duke University did not want me to have it because he
said 35% of the time you are left with double vision and need several
surgeries to correct it. What is the experience with those that have had
it done? How many surgeries are needed?
Thanks
Debra

[Anonymous]

#1147532

Katie,

The endoscopic orbital decomprression was in 1994. Prior to the surgery I had mild proptosis and a slight lid closure problem. My eye motility was normal, no double vision, no optic nerve invlolvement, minimal enlargement of the muscles. Directly after the surgery, I had severe double vision in every field of gaze, extremely limited motility, chronic sinus pain, migrane headaches. Subsequent muscle surgery has restored single vision in only a limited area (low and toward the center).
George

[Anonymous]

#1147533

Debra, double vision was one of the first things that there was a problem with my eyes. My doctor had given me a list of things to watch for and to call right away if anything on the list showed up. Nine months after starting on anti-thyroid meds the double vision started. The doc immediately put me on prednisone and sent me to an eye doctor. After a couple of months my eyes were swollen, protruding, constantly watering and my vision was fading. After seven months of my eyes getting worse, we tried radiation treatments. No change. The eye doctor said he didn’t know what to do next and sent me to another specialist in graves eye disease. This doc messed around with me prednisone doses and nothing helped. One month after seeing him I had my first decompression surgery because my optic nerve was being choked off. The double vision remained. My eyes did not improve and even the doctor said it was a desperation measure, but I had radiation treatments again three months after the first decompression. Again they
didn’t work and I had a second decompression in the other eye four months later. We wouldn’t have waited the four months, but I kept getting viruses. To cut to the chase, I still have double vision and suppose someday I will have the surgery to correct it. After five years of eye problems, they are still large, I have no lids and the bags underneath are noticable. I remember telling the eye doctor that I didn’t care what I looked like as long as I could see. He said the day would come when I cared about my appearance. It’s not here yet! Don’t worry about what might happen. Just take care of where you are now with this disease. It does its own thing and doesn’t go along with your plans. Good luck to you and feel free to ask any questions you might have. Someone on this board can answer them for you.

[Anonymous]

#1147534

Debra,

I had a terrible experience with endoscopic orbital decompression surgery. It converted my mild eye problems (mild proptosis and a slight lid closure problem) to severe problems (severely limited motility, double vieion, sinus problems, migrane headaches). Recommend you consider the risks and potential benefits very carefully. Also consider the various surgical techniques and the experience that exists with each.

George

[Anonymous]

#1147535

Hello all,

I have had a three wall decompression on each eye. The surgery was done under the lower eye lid and it was (for me) the least painful of any of the surgeries I had done. I ended up with facial numbness due to the doctor having to cut the bone away from a nerve that runs under the eye socket. The numbness was a godsend. No feeling no pain! It took 4 to 6 months for the feeling to come back. I also had a sinus pylop removed at the same time. That bothered me more than the eye surgery. I have ended up with double vision that cannot be corrected by strabusmus surgery. I had one strabismus surgery 4 months after the decompressions to bring the eyes into a more normal field of vision.

I wear ground in prisms in my glasses (9 diopter in each lense) and still have some minor double vision at the edges. I cannot look up either. All told I have had 13 eye surgeries. I look like my old self again as I did pre Graves. I wear thick glasses but I can see, I can drive, I camp, canoe, hike, swim, run and in other words enjoy life.

I did not let how I look as I was going through all the surgeries keep me home. I went out looking like the terminator, frankenstien and some others at one time or another. I also had the radiation on my eyes and prednasone. Things do get better. I do not know when I started to feel better it was a gradual thing. Also changed my thoughts about how “I” looked and how “I” thought about how other people looked at me. Beauty is only skin deep.

George brings up a good point. Find a good doctor. Get more than one opinion, and be prepared mentally for the surgery. Above all else keep a sense of humor. I went to the operating room once with a huge gummy eye stuck to my forhead and asked the doc to get rid of it before I woke up. A laugh a day keeps the doctor away.

Hope I was of some help.
JAke

[Anonymous]

#1147536

Looking for any information regarding postive experiences with orbital decompression.

[Author]

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