Results after evaluation

[Tammie]

My son had his eval yesterday and I'm a little confused. He said that if TCH grafted nerve to C7 he would not be able to take muscle from there because it would be taking bad muscle to help bad muscle. Basically, my son's C5-7 are trashed. C8 and T1 are fine. So how can TCH do MQ if all the muscles are bad?
Another issue, while there I saw the cutest baby girl with ROBPI. I asked her mother if she was familiar with this network and she was not. I asked her if her daughter had ever surgery and she said no, that if she had surgery she would loose everything. At that time I was called in to see the doctor, so I didn't say anything. But I wanted to tell her that if her daughter has nothing and if she doesn't have surgery, she's never going to get anything. I'm saying this because there are SO MANY BP children out there. The parents/doctors/everyone need to be educated about this! I hope she logs on to here. This is the best place to learn about BP! Thanks for letting me go on...and on...

[shannonmariegreen]

I was curious about who did your eval. It was my understanding that the nerve graft, requires a transfer of nerves, not muscle. My daughter had the nerve graft done at TCH and they took a sensory nerve from her right calf. They then did the MQ about a year later to release tightened muscles, and allow for better movement. I think that the muscles are fine, in our child, that this is a nerve injury, and that they are what is bad, C5-7 are nerves not muscles.
This was just my understanding, hope it is helpful.
Shannon

[marymom]

It does sound as if that mom may have some misinformation, however I believe many are equally ...mininformed by surgeons thinking that surgery is the "only" option.
I will never forget being told by two seperate-leading BPI "specialists" that in order to achieve any kind of functional use my son would have to have surgery...immediately.
It was very hard to decide against those "educated" GUESSES about my sons decision, especially when the overwhelming response by individuals I was in contact with on this message board,at that time, like 4 years ago-was to do what the doctors say...
but I am very happy with my choice, (to NOT have the surgery)and I respect others and their choices whether they are the same or different, doesnt matter,