Genetic Pthisis Bulbi and Glaucoma

Hello,

My sister was diagnosed with Pthisis Bulbi at birth, which was at first thought to possibly be cancer. After conclusion, she was set to continue living with it until she reached her teens where she could have the eye removed. She is now 19 years old and still has the eye in place. She has no pain in her good eye, however the eye with Pthisis Bulbi has been the cause of migraines and other forms of severe pain, though local doctors won't touch it and some fear a "Pandora's box" if they remove it, similar to pulling an abscess tooth I suppose. She's also developed a band of cataracts in the bad eye. Recently, she had SEVERE pain and went in to see an eye doctor. The eye doctor told her she has Glaucoma and that it's rapidly developing but that it won't let her go blind quite yet and to come back in a year. This is the most absurd thing I've ever heard as far as advice is concerned in my entire life. Telling a 19 year old Glaucoma / Cataract / Pthisis Bulbi patient to just come back in a year or so despite there being processes to help. He couldn't even point her in the right direction. We have no clue where to start, we live in a relatively small city and the .. "doctor's here are sickening most of the time in regards to how much they care or how much confidence they have in their practices. Is there ANYWHERE I can start to help her? I'm in the Navy and can't physically help her. She's in a bit of a shock from it and trying to deny it and is claiming it's not a big deal at all. This I fear will lead to her blindness or worse. Thank you in advance for ANY help.

[Ray T Oyakawa, MD]

No treatment is indicated except to keep the eye comfortable.  They should have treated the pain.  

Dr. O.