Good news / bad news / confused...
I had the evaluation done today to determine my final status for the stem cell clinical trial. Bad news is I was excluded because I am too strong. They said they needed weaker subjects so they could show significant improvement. On the other hand that is good news and shows that my PT is working. When we got home I had an email from the trial doctor recommending that I look into a separate trial focused on improving my gait which they had noticed. It is run by a researcher in the same area so I'll be contacting them.
Now the news we are uncertain about, it opens a lot of questions that we hadn't expected. The neuro who examined me invited us into his office to see the MRI's I had brought for him. His first observation was "Who ever told you that you had a very minor stroke was wrong" Turns out that what I had was what they call a watershed stroke which usually only happens when you blood pressure goes down so low that the area between the hemispheres loses its blood supply. My wife was explaining that they has spent 5 hours in my chest with me on bypass and his response was 5 hours is a long time to keep someone on bypass. The wife explained it was because it took 3 hours to get the vein from my leg they needed to do the bypass and they only allowed for 1/2 hour. Doctors observation was that they shouldn't have had me on bypass until they had the vein.
We learned more in twenty minutes with this neuro than in the last 2 years from any of the doctors. My wife now is thinking that is why they wanted me out of the original hospital, they wanted me to not survive somewhere else. I am at a complete loss now. We will talk to our PCP Thursday as she doesn't have any of the historic involvement in this so I can be dispassionate and try to figure out how to proceed if at all. None of my followup doctors since the stroke were involved back during the original event but now I know why they all seemed surprised that I was not only alive but not essentially a celery stalk. I feel betrayed by the doctors who originally worked on me and then apparently circled the wagons and misled my wife about what really happened.
How do you come back from something like what we found out today?
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