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I don't know what to do anymore
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I don't know what to do anymore

I was diagnosed with a Dandy-Walker malformation back in 2002. I first started with headaches which hasn't stopped since 2002. I maintain by taking pain meds. I have seen neurologists who refer me to neurosurgeons who tell me to go back to a neurologist. I have suffered 11 TIA's in the past 3 years. Each time I am losing more and more use of my left hand and my vision is getting worse. My question is: Should I expect things to get worse? Should I expect a major stroke? I can't get any answers.....
657231 tn?1453836403
You are on the patient forum. You may also want to post on the expert, aka, doctor, forum as well - in neurology.

I see you are near a major city, so have access to large hospitals, however, you have what is termed a "rare disease" so even there, no one may have the expertise you seek.

It would be best to be followed by doctors, not surgeons. Have you found papers on your disease and contacted them for guidance? Have you been seen by a neuro-opthomologist?

I will send you some information I found via pm.
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