Don't Know what to Do? Help....

[admin]

I don't get a chance to post much but I thank anyone in advance for taking the time to lend an ear. My daughter is now 19 mths. old. Had primary with Dr. Nath at 6 mths. and Mod Quad at 12 mths. also Dr. Nath. She has NO bicep whatsoever !!! Not even with no gravity. I mean nothing. We had an EMG recently and were told Lft.(not affected arm) was 4000 and Bpi (right) was 1750 Up from 1000 at 6 mths. Stimulated Erbs point to bicep OK ! No blockage and trasmitting at a faster rate than at 6mths. Great. What the Neuro. couldn't tell me is what it takes to fire the Bicep muscle. Has it atrophyed and cannot move. Why don't we have Bicep yet? We've done all we can and I feel desperate for answers I can get. I'm hoping someone out there can tell me their child got back bicep later than this, when there is still no sign now. I don't know what else to do. I feel so helpless when I've tried so hard to make sure she had the best care I thought possible. Good luck to all of you and God Bless all our children.

Thank you
Julia's dad

[vandaroseboom]

If it is atrophy problem maybe tes can help. Why don't you post on Dr. Papes sight at tascnetwork.net under who are you and what do you want to know - she may have some useful advice at how to get the muscle to start working seeing as it does have inervation.I have seen incredible results with our son using her methods, and have seen amazing recoveries of other patients with atrophy isssues that were uncuccessfully treated by other means and her techniques and know how was able to get things working again . I hope you find a way to get her muscle functioning - all the best.

[admin]

Have you asked Dr. Nath or the PT/OT why she doesn't have bicep function at this point? I would get a copy of your medical records and have a few other doctors review them and get some more opinions. Every case is different so it is hard to say why she doesn't have any bicep function.

[admin]

The only thing that comes to my mind is the possibility of the nerve being compressed in scar tissue at some area. Ask Dr. Nath. And please let us know what you find out.

[admin]

That's a long time to wait after primary for biceps, what does Dr Nath say about it? Have you had a second opinion? I see you are seeing a neuro, is he a bpi doctor? If not, might be worth seeking a second opinion from a bpi doc.
Please let us know what happens.

[Karen Hillyer]

well I don't know if I am going to rock the boat here a little, but I don't think that 13 months is a long time to wait for biceps function following a primary at 6 months.
My son Gavin had primary at 6 months here in the Uk and he had grafts to C4 C5 C6 and C7 following this surgery we saw no active function in his biceps until he was 13-14 months post operative
I don't know why you haven't seen any recovery, so it's probably worth getting another opinion, but I wouldn't give up hope of seeing some recovery just yet.
Karen

[PeggyUBPN]

I have to agree with Karen; I can't remember exactly how long we waited to see "new movement" after Emma's primary surgery, but it was quite a while. Then, after her seondary surgery, it was another quite a while, but she continued to improved (at little, spuradic intervals) for several years. The nerves need time to grow and then to innervate (sp?) the muscle, all the while working on everything with therapy, so don't give up hope, but go ahead and get more info from any qualified source.

Peggy

[PeggyUBPN]

wanted to say, also, don't be afraid to ask Dr. Nath about it. I'm sure he will answer your questions.

[admin]

I'm glad to hear all of you saying that it takes a long time. Well, I'm not glad that it takes a long time, of course. Our son didn't need primary because Dr. Nath was able to stimulate his bicep from the inside, but had mod quad at 6 months in Jan. He still doesn't move his bicep, though, and only lifts his arm a bit. I know it really hasn't been very long at all, but it still is so hard to wait and hope to see results. So, I have new hope now to hear that it can take very long, but can still recover. Thanks.

[admin]

We were still getting biceps in at 3 years of age, primary was done at 7 months. We're working now on strengthening it. The wait after primary was without a doubt excruciating. After five months of waiting, we went back to TX to have an EMG done (I wanted it done the right way) and it did show biceps but on a scale of 1 to 5 it was a 2. Dr. Nath was ok with that level of connection and we just had to wait out the rest. What I am writing doesn't mean that it's ok to wait that long. I still think that you should contact your doc and find out what's going on and why. It could be compressed by scar tissue at some point along the way and it might be an easy fix. I know a little girl who is now 6 1/2 that had 3 avulsions that got nerve grafted and the following year had to have some nerve decompression done and it was just the things that was needed. It was a very short surgery and she was in a sling for 2 days and that was it. It did the trick.