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  • Anonymous
    Post count: 93172

    Hi Melanie. I had orbital decompression done three years ago at the Mayo Clinic in Rochester, MN. The doctors were very sympathetic, as they have seen many Graves sufferers before me, and were able to help me get my life back in order. Although my front teeth are still a little numb from some nerve damage, the surgery seems to have been successful. My doctors were Dr. Colum Gorman, Endo., and Dr. James Garrity, Ophthalmology. You can call me at 507-736-8907 if you want specific details.
    Good luck! Debby

    Anonymous
    Post count: 93172

    Hi Barney…You live in my home town and have the benefit of access to UCLA and all their expertise…( if there is any such thing regarding the eye issues with this disease.) I now live in rural Northern California, where we don’t even have an endocrinologist in the area. My eyes are such pressure pits that I’d be very interested in whatever you find out about this proceedure. Maybe you could mail pamphletts or E-mail me the info. My address is P.O.Box 823, Blue Lake, Ca. 95525. I’ve been diagnosed since June, had 1 dose of radio active iodine and continue thyrotoxic levels with my labs. I finally see an endocrinologist from San Francisco, 9/27. Doing time now just waiting. Every morning my eyes are increasingly swollen and painful…It takes half a day for the excess fluid and edema to drain somewhat after a night’s rest. I want this to stop!

    Anonymous
    Post count: 93172

    Hi all,
    There may be some confussion about orbital decomression that needs some claification. I don’t belive I have
    ever heard of an orbital decompression being done more than once. The surgery removes part of the eye socket and
    allows the fatty tissue behind the eyes to recess into the sinus cavity. Results are immediate and in most cases
    very dramatic. In my case my eyes recessed almost 3/4s of an inch. You do need additional surgeries after a
    decompression since the eyes have gone back into your head. Eyelid surgery is in your future to adjust the lids to
    them close better and you may need strabismus surgery for double vision. If you are a candidate for orbital
    decompression consider it. If you have radiation the fatty tissue and eye muscles loose flexability and you may
    still need to be decompressed at a latter date. If that is the case decompression doesn’t work as well for people
    who have had radiation as opposed to those who have not. I just talked this over with my eye surgion in Miami on
    Wed of this week. If you have any questions please call me at 407-254-9719 and I will return your call collect.
    I had the decompression last year and it is the best thing I have had done to help the Graves eye problems to date.
    Regards,
    Jake George

    Anonymous
    Post count: 93172

    Dear Jake,
    THANK YOU so much for the clarification!!!! I was really starting to loose all hope. A highschool friend of mine died recently and I ran in to some other old friends who looked right at me and didn’t know who I was. This group is a great service. I really appreciate your attentiveness and time.
    Denise

    Anonymous
    Post count: 93172

    My daughter had orbital decompression 2 years ago and what a difference. She has also had eyelid surgery and is waiting for her dr. to approve further surgery for the area below the eyes. She had the decompression surgery not to improve her looks but to save her vision. The optic nerve was affected by the amount of fatty tissue developing. One warning to those considering — be sure your doctor knows what he is doing, not all opthamalogists routinely do this procedure.

    Anonymous
    Post count: 93172

    Hi Barney! I had orbital decompression done in 1993. It was the best decision that I could have made. The swelling behind my eyes had gradually increased since my diagnosis in 1990, and I felt like it was the only alternative. I was comfortable with the decision, and I felt that I was in the best hands – even Barbara Bush went to Mayo Clinic for her treatments.
    See Jake’s message from 8-23-96 regarding orbital decompression. He gives an accurate account of the basic procedure. Also, the National Graves’ Disease Foundation has a good bulletin on orbital decompression and other eye surgeries. Call 1-704-877-5251 for information. Mayo Clinic has info on their website at: http://www.mayo.edu/Mayo_Ophtho/Graves_info.html
    I was in the hospital overnight after the surgery. My face was swollen and I had to wear gauze under my nose for a few days because of the drainage, but my eyes looked half their size! I actually looked almost normal again! It took a few weeks for the swelling to go down. My face was numb in the sinus area because the doctors go in through the sinuses to get to the orbital cavities, my front teeth were numb, and I had slight double vision. But, six weeks later extraocular muscle surgery corrected the double vision. Six weeks after that lid retraction was done on both eyes to make them close more completely, get rid of the starey look, and give relief from the nighttime dryness. All of the surgeries were worth any discomfort and inconvenience! With experienced doctors and a positive attitude, they are a viable option!
    Best of luck! Keep us posted on how you’re doing.
    Debby

    Anonymous
    Post count: 93172

    Hello, everyone. I’m new to your message board and have learned a lot by reading your messages to each other. I’m to have the orbital decompression surgery next month and wonder if anyone can answer some questions for me. My doector said one side effect is numbness of the two nerves down either side of the nose. In most cases this is temporary but in some cases permanent. Can anyone tell me about the side effect? How does the numbness feel? Does it interfere with daily life – will my nose run and I won’t know it!!!?? Has anyone had it last permanently? Should I be worried about this side effect? Also, how painful is the healing process in the roof of the mouth? How long does it take? One incision or two? You can see that I have lots of questions – any info will be much appreciated!

    Anonymous
    Post count: 93172

    Diana,
    I have had the orbital decompression and it really wasn’t to bad.
    The facial numbness was a bother but I realized not feeling no pain.
    The recovery was quick. I was back to work in two weeks. The feeling
    came back over six months. I posted a message earlier on types of
    surgeries. Give it a look. I can’t stay online to long tonight but I
    will provide more info. Debbie Jass also had the decompressions. I am
    confused about the roof of hte mouth comment. Could you please elaborate?

    Later,
    Jake

    Anonymous
    Post count: 93172

    Jake, thanks for the info. My doctor said he would do the surgery by going up through the roof of my mouth, so I am wondering what this entails and how it will feel. I read your article about the different types of surgery and it was very helpful. Was your decompression surgery performed another way from what I’m describing?

    Anonymous
    Post count: 93172

    Diane,
            Mine was done by going under the lower lid and along side of the
    nose nest to the eye. I have a scar on each side of my nose about 1/2 inch
    long and the incision on the lower lid was done right under the eye
    lashes and you can’t see it at all. Give me a call some time at
    407-254-9719 and we will talk. I will call back collect if I am not home.
    I will ask my eye surgion in Miami if he has seen it done this way. He is
    out of town right now but I will ask. Send me the name of your Doctor.

    REgards,
    Jake

    Anonymous
    Post count: 93172

    Jake, your surgery sounds quite different. My doctor is Dr. Frueh at the Univ. of Mich. I found a great article today at the libary done by Mayo clinic. It was a case-study of all surgeries done there over a several-year period and gave very good statistics about the various side effects and need for follow-up surgeries like the ones you mentioned. If anyone wants the name of the ar
    ticle, I will be glad to post it.

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