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Hi Ski, the other eye IS affected, inferior and medial/lateral muscles, but not as much. Optic nerve, visual fields, color recognition are all fine.
I just hated to be pushed in a corner, have the OD while I am probably still in the active phase, but it needs to be done. There are several cranial nerves in the area, and I am fond of them. I would presume they do their best guess to decompress approximately the same on both sides. I almost took Rituxin, but this event precluded doing that. I did have a course of metholtrexate which made no difference. Thank you so much for your response.
ShirleyWe are monitering the left eye very carefully. If there is increasing decrease in vision, the OD will be done emergently. I have objects outside that I look at every day, watch for deterioration, and I am seeing the neuro-ophthamologist q week until the surgery. Hoping it stays stable. I live alone, have a friend flying from Texas (I live in Seattle) to stay with me post-op. Two of my three kids are out of the country at that time, the other one has a full time job in So. Calif., and I decided, and she is fine with it, that she will come some other time, when we can enjoy the Seattle weather.
I want to know how to find the right doctor. What should I goggle to find a doctor to help? I had the decomp and work with my dr past 3 yrs. for some reason I don’t feel she is the one. Her office has turned more to skin, BHRT nothing to do anymore with GED. Any suggestion finding a second Dr to help me?
Do you still have Grave’s, or TED that is being followed, and treated? Are you having symptoms now? If you have a primary care provider or an endocrinologist, I would ask that doc to ask around, see if he/she can provide a couple names of docs who are ophthamologists who are known the area for their knowledge of Grave’s. If you live in a place where there is a large medical center, or a university hospital, I would call the eye department and ask the same question. Where do you live? It is possible that someone on this site knows of one, but I am not sure if the site rules allow mention of doctor’s names. When I finish this email, I will look up the rules about that. From your email, I am a little unsure of what you are looking for.
In my experience, I did the things I mentioned above. I asked for all docs in the community who were familiar with Grave’s. Not sure if this helps, maybe the moderator/facilitator has some better/additional suggestions.Look at doctors affiliated with this organization [url:1n4kl63o]http://www.asoprs.org[/url:1n4kl63o]. They have specific training that’s helpful to TED [Thyroid Eye Disease] patients (by the way, TED is the same thing as GED, just a new name since patients can have it without having Graves’ thyroid disease).
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