United Brachial Plexus Network, Inc.

Hi everyone,

Well we went to see Amaru's doctor here at Erie's Shriners Hospital and he stated that he would like to monitor Amaru for the next 3 months and see if he gains any hand, wrist and finger movement. If he does not regain any movment in those areas, then we will have nerve surgery. That would be in July when my son would be 8 months. My son currently can lift his arm and has slight shrugging in his shoulders. He also recently started rolling over..which is exciting and we are seeing that he is trying it both ways. He is not letting his right arm stop him..lol.

Has anyone else's child had primary surgery at 8 months?? I am concerned that we seem to keep waiting for things. I do trust our doctor but I can't help but worry. Thanks all of you for listening and please keep Amaru and us in your prayers.

Maria
Mother of Amaru, 5 months, ROBPI

Lexi had her first nerve surgery at 7 months. Second nerve surgery at 20 months, and first muscle transfer at 4 years.

Have you looked into any other doctors? My daughter had a total plexus injury as well and went down for primary (to houston) at age 4 months. It takes the nerve so long to grow all the way down the arm that if we would have waited longer there never would have been a chance for her to recover any hand or finger function. Just something for you to think about. Also, have you checked out any other doctors? Do you know if this doctor will stimulate the nerves intraoperatively BEFORE grafting them. My daughter had a VERY severe injury and did not get nerve grafted because her nerves were active (meaning attached and regenerating) intraoperatively. So, she only had the mod quad surgery at 4 months. She is 27 months now and has regained nearly 100% of her arm and hand function...I have to say...although I know there are those of you out there who disagree...this was all thanks to Dr. Nath in Houston.

My advice here would be not to wait to long and get a TES and NMES program started as soon as you can.

Feel free to e-mail me personally, as total plexus injuries are near and dear to my heart...and since we have had such and INCREDIBLE recovery without much hope in the beginning, I'd love to share our success story with you.

Take care,
Lauren

I was very disappointed to see this new intraoperative testing isn't mentioned anywhere in his book, nor any publications to date.

Kate

I AGREE 100% WITH YOU LAUREN....
WELL SAID!!!!!!!!!!!!!!!!!!

Yeah Lauren, well said, well put. I agree 1000% We love Dr. Nath too, my son had nothing and has about 85-90% recovery. WE thank the Lord daily for what Dr. Nath has done for my son.

I feel, let the others say what they want, I know What he has done for my son, my family. They just don't understand !!!

Gayle mom of Brandon 8 1/2 ROBPI

Thanks for replying everyone I really appreciate all the words of experience. Question what is TES and NMES???

Maria

From what I have read I conclude there is no scientific evidence that the earlier a primary surgery is done the better the long term outcome is. I know this sounds very counter intuitive, but I think it's better to act based on scientific studies than on intuition.

You might take a look at a paper like this: http://journals.cambridge.org/productio ... extid=2050

I hope you that your waiting will be rewarded.

John

John,

There is plenty of scientific evidence that a nerve only regenerates about 1cm per month and that a muscle will totally atrophy and die within one to one and a half years without innervation, so you do the math. If a nerve is grafted from the neck how long would you figure that would take to innervate the T1 nerve? A LONG time...long enough to make what I said more than valid. Please do not give these people false hope based on nothing valid. Does/did your child have a total plexus injury. Did you have one of the best doctors in the nation say to you that chances are slim to NONE at 4 months of age for a graft to make it down to the hand and fingers?

Sorry, but I think what you just said is based on total ignorance of the situation.

Sorry if this offends you, but I'm trying to HELP a family in need.

Take care,
Lauren

Maria-

You already e-mailed me, so I will explain the TES and NMES via personal e-mail, where attacks are unlikely.

Talk to you soon,
Lauren