Guest guest Posted June 22, 2001 Report Share Posted June 22, 2001 , Maybe you should see a retina specialist or neuro-ophthalmologist or other eye doctor familiar with NF2. I know a lady who works in an ophthalmologists office who works with a doctor who has been in practice for over 30 years, I believe, and he has never seen a retinal hamartoma. I guess they are fairly rare. Your eye doctor might not realize what you actually have. I was fortunate that Nick's pediatrician noticed his exotropia (his eye drifting outward) when he was six months old. I hadn't even noticed it. I am glad we were referred to an ophthalmologist. Even if he was misdiagnosed. :-) Re: retinal hemirtomas (lisa) > I was born blind in my right eye, drs thought it wascancerbut then ditched > that, wore a patch for years, kids made fun of me atschool and the whole bit. > went and still go to therapy (opthalmics) and it stregthen the vision in my eye > and has been the same for at least 15 years. dr has always just said " weak > nerve " he is arabian, heavy accent, been seeinghim since i was 3, thats 1974 > for you younguns out there. Im sure the guy hasnt a clue what nf2 is. When i > ask for a name of my eye problem he just shakes his head and sighs and says > " weak nerve (meaning retina " now i wonder if i have a haratoma thingy???/ Quote Link to comment Share on other sites More sharing options...
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