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Hi Pianogirl,
I haven’t been through TED, but I think I can answer some of your questions based on things I’ve read through this BB and also the presentation we got from Jake’s eye doctor at the convention in Reno.
First, even though your muscles may be hardened due to the radiation, it may still make sense to do a decompression. It’s still possible to get some relief that way. Also, the doctor advised that, IF you are to begin doing surgeries, and you know you need to have each of these, then the decompression MUST be done first. This makes it easier to get your eyes as close to normal as possible.
I’m not sure about a current CT scan, I hope someone else can answer that for you.
From what I understand, the “hot phase” has ended when the protrusion measurements stop changing. Sounds like, for you, that has been a long time.
When the bulletins talk about patients getting better with time, I think we may want to read more into that than exists. If your eyes have done the big swelling, then there is certainly some improvement that can be had by waiting, but the real damage is caused by the scar tissue that the swelling leaves behind. If your eyes haven’t been changing very much, then, in my humble opinion, your eyes have probably gone as far as possible on their own.
Getting the second opinion is a great idea — besides the fact that you’ll feel better having a second pair of eyes on your eyes, maybe you’ll happen to find a doctor you really like working with!
Good luck to you,
Ski
NGDF Assistant Online FacilitatorThanks so much for your quick response, Ski! Everything you’ve said makes perfect sense to me, and is in agreement with my eye doc (I do think he’s a wonderful doctor.) I must say that the thought of getting better is a very happy one to me! – Pianogirl
Ski gave good answers but I can talk from one who has been there so to speak. I had a three wall done on each eye. Radition first and decompression second is not so bad. I had decompression first and orbital radiation second.
It is a medical school of thought thing I am told. Some medical schools teach orbital radiation first and decompressions second and vica versa.
The eye muscles and fatty tissues do harden up some with orbital radiation and may make decompressions not work as well for some people. A current CT scan would be advisable so the doctor can see what is the situation NOW not six months ago. But decompressions after orbital radiation do work.
My doctor’s considered me out of the hot phase if I had no cahnge to my eyes for at least six months.
Hope this helped.
We are only a click away.
Jake
On-line facilitatorYesterday my opthamologist told me he didn’t think I would get much relief from my TED symptoms unless we go ahead with decompression and then eyelid surgeries. He is going to take another look at my eye CT scan from April and then talk to me about what we should do.
Questions:
1. Because I had eye radiation (because my deterioration was happening so fast) I know my eye muscles may have hardened which may not allow them to rest back in the eye socket even after decompression surgery…is it worth it to go ahead with the surgery?
2. Should another current CT scan be done (which will show changes since the eye radiation?)
3. The bulletins I’ve ordered from NGDF say not to have surgery till you are out of the “hot” phase – how did you know that it was time? My doctor thinks I’m out of the hot phase because we did the eye radiation in May and because my recent anti-thyroid antibody test shows things have really calmed down, and my protrusion measurements haven’t changed since the beginning when things were the worst.
4. The bulletins also say that some patients will get better with time – how long is a reasonable time to wait? My eyes still fluctuate in terms of the feeling of pressure from behind and the cornea pain from the eyelids not closing all the way. I certainly don’t want to live this way any longer than I have to. When things get really bad I go back on Prednisone for a while, but my opthamologist doesn’t want me to continue doing this.
I do plan to get a second opinion, but would appreciate any comments from those of you who have been through this.
Thanks – Pianogirl -
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