[robinc]

#1019058

Hi,
My sister was diagnosed about a year ago,is having alotof eye problems has done the iodine pill and now the radiation of her eyes, no help. I think her doctor is a quack. Can anyone refer us to a ophthalmopathy specialist in either sonoma, marin san francisco, or sacramento area? Or could you tell us where to possibly find this info!
Thank You VERY much.
robinc ” title=”Smile” />

[npatterson]

#1068911

Try ASOPRS.org
How long has it been since the orbital radiation? Sometimes the results are agonizingly slow!

[robinc]

#1068912

It has been about 5 or 6 weeks, with no change, the radioligist told her if it has happened by now ,it won’t. So she wants to go ahead with surgery, but the quack doctor told her she would have to wait probably at least a year??? We really need a new Doctor!!!
Thanks
robinc

[Ski]

#1068913

If you do surgery too soon (while the eye disease is still active), you can end up doing more harm than good. You have to wait until the confirmed cold phase of TED, and that can take anywhere from a year to three years, with no good information on how long it will be for each person. Patients who have smoked cigarettes are more likely to have a longer period of active TED, but that’s the only determinant. If surgery is done while the disease is still active, the antibodies can be triggered into a fresh period of activity that can negate any positive effects from the surgery and limit the ability of future surgeries to help.

[robinc]

#1068914

Thanks Ski,
Do you know of any opthalmologists that specialize in Graves Disease in the Bay Area?
Thanks,
robinc

[Ski]

#1068915

I haven’t needed to search one up, sorry about that. Nancy’s suggestion to look at http://www.asoprs.org is a good one ~ affiliated doctors have special training in the issues of TED.

[Andros]

#1068916

robinc wrote:It has been about 5 or 6 weeks, with no change, the radioligist told her if it has happened by now ,it won’t. So she wants to go ahead with surgery, but the quack doctor told her she would have to wait probably at least a year??? We really need a new Doctor!!!
Thanks
robinc

Robin. I am so sorry for the situation. I can only comment that I had to wait 18 months after having radiation to the eyes concurrent w/ Prednisone to be "sure" the orbits were no longer being attacked. Once the orbits calmed down, the surgeon was better able to assess what needed to be done and also, I know many who had orbital decompression waaaaaaaaaay too soon and had to have it done over again. This is something you do not wish to do twice for a myriad of reasons.

Please keep us posted.

Lu Anne

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