[ikennn]

in reply to: Alpha Thalassemia and Thyroid Eye Disease #1183476

Thank you Kimberly and Shirley! Your responses were wonderful and informative. Sorry for the late reply, with the holidays and everything else going on it was a bit crazy.

Quick update, my double vision seems to be improving with eye exercises. Its been about 3 weeks since surgery and things are definitely improving very slowly. I can drive now, slowly and with one eye covered. Seems that i’ll have a pronounced scar on my face but as long as I have my vision I don’t mind.
I do have insurance provided by my university but I’ve also decided to take a temporary leave of absence while I get my life together. So any future procedures would be out of pocket. (I looked at the bill and almost passed out. My OD was about $100,000 in all.)

I will definitely look into a nero-ophthamologist.

The double vision definitely occurred after surgery. I’ve never experienced double vision before in my life.

I do not think I will EVER undergo another OD after my experience and seeing the costs. If I had a life threatening condition then I would consider it again. After this experience I don’t care if my eyes look different. I would rather have my vision than have evenly matched eyes.

I’ve asked my hematologist and she does not think I have problem. I love them but I think they think I’m crazy or a hypochondriac.

I’m lucky enough to where Im non-trafusion dependent but it has it drawbacks. My full diagnosis term is “hemoglobin E trait/alpha
thalassemia/AE Barts Constant Spring disease”.

You’d think having hemoglobin E trait/alpha thalassemia/AE Barts Constant Spring disease would be enough but life also threw in TED. To say my life is crazy is an understatement, although I still love my life. I’m lucky to be alive and I live each day in great stride. My motto is that Life is beautiful. Im one of the lucky ones to be able to see beauty in everything.

Okay I’m done being sappy.

Ken

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