Sunday, November 23, 2014

No Neuro Is No Concern


I'm surprised this issue doesn't concern people:  I do not have a neurologist, nor do I receive any neurological care.

I had brain surgery in 2004 to remove my AVM (arteriovenous malformation). This was the cause of my brain injury. My current medical plan was to leave it, treat it with medication, and wait for it to explode and kill me. This plan was not optimal. Stanford University offered something unusual but risky. They would try to shrink and remove the AVM. The procedure was not covered. It fell under research and was taken care of by the university.

I had been diagnosed as being in a Persistent (I think it changed to 'Permanent' at this time) Vegetative State, so I only received necessary daily care and general medical.

The surgery was successful. Instructions to follow-up with a neurologist never happened. The routine follow-up does not happen. I should get annual neurological appointments. I don't.

I was diagnosed as being vegetative way back before the surgery. The state was deemed 'Permanent.' Although my danger of dying was removed, and what I have gone through more closely resembled MCS (Minimally Conscious State), I am permanently vegetative.

The government has gone as far as to e-mail me and explain to me that I am in a coma.
I don't get anything but general medicine. I get regular GI appointments because I have a feeding tube. I saw a neurologist once when I got out of the hospital only because I pushed for it. It was not routine.

Vegetative persons don't get much other than nursing home care and basic medical. I don't even get all that now, as I am not in care. I get basic medical.

(Why would a vegetative person not be in care such as family or care home? The diagnosis I have is not right.)

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