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optic nerve coloboma. Pain. Misdiagnosis?

Hello, just trying to look for answers anywhere I can. I'm 25 years old and was born with optic nerve coloboma. I have no vision in my right eye unless I concentrate really hard then I can somewhat make out shapes. Iv had 2 cosmetic surgeries just to straighten out the eye for appearances purposes. My eye has never caused me any problems or Grief up until about 5 year ago when I started having pain behind my eye. No one was able to help me or tell me what the pain was. I noticed that when my eye became stressed and moved off center the pain would be worse than if it was where it was suppose to be. I made the trip to john Hopkins hospital in Maryland to Try and get answers. They said they were migraine headaches and to see my Doctor for a prescription. I didn't really notice that much of a difference being on inderal for migraines. I began Botox treatment to help keep my eye centered (Injected directly into the eye muscle). This seemed to help my pain tremendously. Iv been off the Botox treatment but continuing the inderal as I have been. My pain is becoming unbearable and my primary physician is no help. I don't want to continue receiving these injections for the rest of my life. I'm just exhausted and feel like my diagnosis is not accurate. I feel like something else is going on and no one is willing to help me. Have you ever heard of anything like this before? When I went to john Hopkins I remember the doctor  who saw me saying that this wasn't the normal clean cut case of optic nerve coloboma.

Can you help me? Or lead me in a direction of anyone who can? I'm tired of pain and being brushed off by everyone I see.

1 Responses
Avatar universal
Have you been seeing an neuro opthamologist?  Perhaps you could try Mass Eye and Ear?  http://www.masseyeandear.org/specialties/ophthalmology/neuro-ophthalmology/

Best wishes for a solution.  

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