Thyroid Eye Disease Decompression Surgery?

I have been hyperthyroid since 2003.  I started taking anti-thyroid drugs, and that worked well for a long time,  Though I had some periods where I did not get regularly checked and my levels got out of control until I readjusted my medication.  A year into it my endo at the time said I had gone into remission, and so I stopped, but then around 7 months later my symptoms came back - extreme weight loss, achey (achy) muscles.  So I did the roller coaster ride of thyroid levels for awhile, and then starting may 2008  I believe the eye troubles started.  I was slow to realize it.  I didn't really figure it out until people around me started to say I looked weird.  For awhile I couldn't look at myself in the mirror very well, I didn't realize it was because my eye muscles were messed up.  By the time I slowly dawned on what was happening, my eyes were bulged out and I got a specialist last October.  By then it was too late, my eyes looked completely different and friends didn't recognize me so well.  I did a course of steroids and got my elevated thyroid levels in check and that helped some, but the steroids weren't great to take so my Opthamologist ended the steroids.  Since then I just had a Thyroidectomy this July - something I didn't want to do at first (2003) in the hope that things would correct themselves on their own- they didn't.  I mainly removed my thyroid in the hope it would stop my eyes from getting worse, but actually the doctor found a very small bit of cancer in my thyroid- so now i am completely happy I got my thyroid removed.  So far I feel fine post thyroid.

Now the next step is going through eye surgery - really surgeries.  I can't decide whether to go to a local guy (Kansas City area-Dr. Kahn) to get the orbital decompression surgery - or to try to go to a fancy place like the Mayo Clinic (not sure how much more it costs there  with insurance).   How many visits does one need to make before and after orbital decompression surgery normally?  The mayo clinic is not close, so I'd rather not drive there over and over.  

Once the decompression surgery has been done, I wonder if it's okay to go to other doctors (closer to home) for the next two surgeries (strabismus surgery and eyelid surgery).  Which surgery is it most important to have an extra skilled person do?

I still hope things would correct themselves on there own, but my eyes are still protruded after a year or so.  And I don't want them to get damaged over time because of exposure.   I hold my head higher than normal, and see double in the peripheral of my vision.

Does anyone whose gone through these surgeries know whether or not your range of eye movement (ability to look around a room without moving your head) got worse or better from the surgeries?

Thanks for any help so much.  This condition is a bugger.

[John C Hagan III, MD, FACS, FAAO]

Use the search feature and archives to read the very descriptive and helpful discussions of this procedure including  by people who have had the surgery. Eye muscle problems are common both from the thyroid disease and also the surgery

JCH MD