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Good news / bad news / confused...


scottm

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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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Scott, knowing you you won't miss a beat but soldier on.  You have the strength to do that.  On the other hand you could get some legal advice as it seems as if your stroke was caused by outside influences.  You have done so well and I am sure there is further improvement ahead for you.

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Well, the wife is furious about how the doctors misled her. She has contacted a lawyer our son who is also a lawyer has recommended. My wife is ready to start nuking the doctors who initially did the surgery from orbit. I can't afford to get upset, getting angry or upset tends to completely collapse my ability to think, I just shutdown. She is angry enough for both of at this point.

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Hello Scott, can uderstand your wife feeling so mad. Thank goodness that you did come through alive.

 

That is a blessing, let your wife and the attorney work on this, so you don't get upset, and have a

 

totaly collapse. Wishing you the best, keep us up to date with whats going on.

 

Yvonne

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it is good news that PT is working.  my thoughts and hopes for you were that the procedure would reduce or eliminate the rather severe pain you experience.

as in many things our attempts may not succeed (and too often don't(lol)) but the important thing is in the attempt, and I know you will keep trying.

 

the thoughts that you raised in your last paragraph are truly devastating.  and as I am sure you recognize determining the accurate history is not  going to change your present situation. perhaps to simply forgive them and move on would be course that would cause you the least anxiety. and in truth I am not sure what I would do.

 

best wishes to you and your wife in this time of increased stress and uncertainty.

 

david

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Hi Scott as David said 20:20 hind sight doesn't change where you are now, but if you can get more financial help from the people who put you in this position that will help, but as you noticed maybe the emotional cost for both you and your wife is not worth it.  Best wishes for whichever path you choose.

 

Bit of a bummer that you aren't considered a good candidate for their trial, but failing to get in because you are too strong is probably good news, they do need to be able to measure statistically significant improvements, so sometimes that happens, best of luck with the other trial.

Hugs

-Heather

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