[Anonymous May 12, 2004 at 7:54 pm Post count: 93172]

#1023449

first let me say – good for you being so supportive during all this. I had decompression on both eyes at the same time – one dropped down the other back – I was prepared, my doctor said something like that could happen but my optic nerve was being compressed and I would go blind if I didnt have the surgery. after the surgery my sight was good just double. I wore a patch over the down eye and my reading glasses – I wore the patch for about a year or so, I never missed work and I did all my normal house type work. I gained 50 pounds had a patch and lost hair …. all the while my husband would tell me how beautiful I was, he still does. I’ve had surgery for the double vision – couldnt be correct completely but prisims in glasses do correct it. I’ve had surgery for my eye not closing all the way and for the fluid build up in the lids – about 4 or 5 of them, will be ‘tweaked’ again next month. please tell your wife it may not seem like it but it will get better and you just keep reinforcing your love for her. I sleep on a wedge and pillow to help the swelling – and when my left eye wouldnt close I wore goggles to keep out the air at night to help with the tearing. Please give her my good wishes. also, buy her ‘graves disease in our own words’ good reading. Sandi.

[Anonymous May 13, 2004 at 9:02 pm Post count: 93172]

#1085817

wife Janice answering you back. Thanks for all the insight. They also told
me that there is only a 60% chance to correct the double vision. and they
wont even do the surgery until aug. or sept until all is healed. The doctors
are talking about doing radiation tx to bring down the swelling in my eyes
that im having. did you ever have that done or know anyone that has. I also
have tried the prism in my glasses there not working well for me and find it
more comfortable to wear a patch. I have not been able to do my job sense
surgery with one eye and the double vision and I get so bored sitting around
the house you can only clean so much. only able to drive short distance not
to good at it with one eye patched. Do you know of any support groups for
people with Graves or how to look into it. I live in Mass. My husband and
children have been very supportive but I have to rely on them for so much
and that isn’t me so it makes it hard for me . I have always been that
independent person. My Doctors are in Boston 1 hr drive and they have to
bring me back and forth to apt. The doctor also started me on a diuretic to
help with the fluid build up in my eyes yesterday. How long have you been
dealing with TED I started in Jan. 2004 it sounds like I have a long way to
go? I also had so much swelling that it was resting on my optic nerve and
they rushed me in quickly. I have good eye sight in my left eye but there
was a little damage done in my right eye not as clear of sight but just
happy Im not blind.

thanks for all your help.
Janice

[Anonymous May 14, 2004 at 12:34 pm Post count: 93172]

#1085818

YES, I had the radiation treatments to the muscles behind eyes – stopped my double and blurred vision. Mine was done in 10 consecutive treatments. I would highly recommend it. Was told it is not as powerful as treatments a cancer patient gets because it was only for 1-1/2 minutes on each eye (cancer patient would get about 10 minutes). So, there were no side effects – no nausea or hair loss. Really quite painless, but you have to be very, very still. Hope this helps. Joy in NoGA mtns.

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