[cmpopov12]

in reply to: GED #1071375

Thanks for the information. With every passing day I learn something new about this disease, I now understand that it was not to prudent for me to have decreased my prednisone (under my Doctor’s advice) in his effort to get me off of it – which let more inflammation increase, causing more proptosis. The proptosis is not drastic, I am much improved from the full blown stage that I was in in January but, I was better right after surgery when the decompression was done and I was on a highter dose of steroid. I am certainly going to rethink taking any action at all for the time being and be cautious about weaning from the steroids to minimize the proptosis that I will have to live with. Thanks for the insight into the flare-up that can occur from any additional surgery at this time. I guess I was just hopeful that they would be able to adjust the position of my left eye that is pulled inward while I waited out the disease process. Cheryl

[cmpopov12]

in reply to: GED #1071373

I spoke with my endocrinologist yesterday who schooled and practiced in Italy before coming to Mass Eye and Ear. He is very open minded and a wonderful Doctor. If anyone in the Boston area is interested in his info I would be glad to provide it. We talked about the steriod injections into the orbits and he stated that it was "old therapy" and they have discontinued doing this because of the lack of proven positive results. Then he said, "Wow, just think about having a needle so close to the eye!" I don’t think I am a candidate though because I had to have both optic nerves decompressed – which strips the protective bone from them. My treatment – having decompression surgery to save my vision – was done while I was very much in the active phase of GED, even though I had IV steroid treatments prior to surgery. My prednisone has been reduced from 80 to 15 mg because of the IV and surgeries, however, my proptosis (bulging) is still prevalent and the double vision is extreme. My Doctors are suggesting that I "wait out" the disease and then have muscle correction surgery and further decompression if needed. I have read that this can take months and sometimes years and I cannot stay looking like this. Has anyone had muscle correction surgery before the disease is in remission? I know I would need to have it again down the road after the disease abates but honestly how can Doctors just send you home to wait it out.

[cmpopov12]

in reply to: GED #1071370

Dear Lakeview, I have been taking Flavay for just a week now and I have noticed a significant decrease in the inflammation of my eyelids and the watery feeling in my eyes has also decreased. I am presently trying to decrease the Prednisone from 20mg to 15 then to 10 and then off – I was on 60-80 mg prior to IV sterioid treatments. The IV treatments enabled me to decrease the steriod but I haven’t been able to get off it completely. Until I can get off my Doctors will not consider doing any other surgery to correct the Proptosis or the Diplopia. I am in a holding pattern right now and I too, as evidenced by the Flavay, will try alternative methods to beat this disease. Although my endocrinologist is not too keen on using a product that has not been subject to a medical study he is tolerant. Also, I am taking 6,000mg of Flax seed oil daily which also is helpful. My Doctor did tell me about the Flax – I get it from a company called "Swanson" that you can access on-line. I also have cut sugar and saturated fats from my diet that can impact the inflammation negataively – I notice it immediately when I indulge – I get the inflammation back in the eyes. I hope some of this information is helpful to you.

[cmpopov12]

in reply to: GED #1071368

Thank you so much for the information. I will certainly ask my Endocrinologist about the injections – he seems to be very informed and open to suggestion in his quest to help me with this disease. I look forward to my membership as a positive tool in my recovery. Thank you again.

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