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Cerebellar Stroke - experience/treatment/recovery

Stroke & Cerebrovascular Diseases | Last Active: May 5 11:27pm | Replies (515)
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@wendyruhl

I am having trouble finding a good doctor that understands my loss of mental capacities. Is there a particular search or way to find a good neurologist in my area that understands about a cerebellar stroke. It's pathetic but I feel like most neurologists barely know anything about them ... do I just need to call around, or what??? cause I am sure their staff doesn't get it and will just say 'yes'. My doctor since I had the stroke doesn't even understand why I am still having issues...physically I am getting better and only suffer when overstimulated - but he doesn't even understand that... and he thinks I should be fine mentally and that it doesn't make sense...really, you idiot - sorry, but he is worthless.

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Replies to "I am having trouble finding a good doctor that understands my loss of mental capacities. Is..."
bille | @bille | Oct 21, 2019

I totally sympathize with you. I believe outside of motor control issues, most Doctors have very little knowledge of the impacts Cerebellar strokes have. I finally went to Johns Hopkins for a "Neuropsychological Evaluation". It was a standardized comprehensive battery of tests checking memory, logic, et al. Besides testing me, they also interviewed my husband. At the beginning they stressed that they would not be able to tell me what I lost, but rather could ascertain my neurologic health compared to my peers.

They identified a number of areas, primarily they recommended a sleep study, and treatment for depression. The sleep study was negative, but the treatment for depression has made a huge difference in the quality of my life.

The other fantastic thing coming out of this is I now have a solid and comprehensive benchmark. This testing is very standardized so in the future I can be tested against my own benchmarks. That is comforting to know.

I don't know where you live but you or your Doctor should be able to find a facility that can perform the testing on you. Not any facility can do this since it requires specific training on how to give the tests.

I hope this helps.

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