Tony,

 

What an awful experience.  I have steam blasting out of my ears and nostrils for you.  For crying out loud.  I hope our good and helpful doctors read this site.  I hope the others do, too.  They will both find themselves here.

 

My first Dr. decided it was stress.  Or possibly my imagination. (Duh.  Life is stressful especially with an eye playing loop-de-loop. And who would dream this up?)  The second said that I should have a Lyme test and seemed generally irritated with me.  That's why I just shut up for a few years.

 

 The third picked it out in moments and called the pediatric ophthalmologist in--and that was that.  So, he took over, and tried what seemed to be reasonable possibilities (Tegretol being one--definitely not my drug.) Happens the pediatric ophth. trained under the doctor in Madison, at the University teaching hospital, who advised me for several years, understood my initial reluctance to opt for surgery--or inability to, and eventually did the magic last year.  I was lucky.  They had no trouble at all working together in my best interest.  Those good doctors get the goldest of gold stars.  And guess what?  They seemed to think it was good practice to talk with eachother!  Happily!  

 

Do you have any university hospitals or teaching hospitals nearby?  Might be worth it to do a little poking around on you own since you aren't getting exactly a dynamic bunch of help at this point.

 

It is a helpless and deflating experience to reach for expertise and at least some understanding, and get a beige and disintrested response.  Dont' let it whack you down.  Start the real fight now.  Maybe the Tegretol will help you since it has worked pretty well for some people.  But self advocacy is good for the soul and for the eye.

 

I was cleaning out the drawer near the TV this week, and in the muddle of stuff, I found a bunch of my paper eye patches.  That brings things back with a jolt.  It was a year ago that I was counting down days to surgery, and systematically cutting patches out of magazine covers.  Ah, a reluctant pirate I was.  When I took that test, it was a different format, and I came out as "Bloody Anne Bones".  Aye, a fearsome name, that.  Avoid my vengeance, ye swabs.  Sounds like a person willing to take on a dismissive practitioner, think ye not?

 

Annie