United Brachial Plexus Network, Inc.

Hello all,

My almost three month old is schedulded to have tests in January and possible nerve surgery a few days after the tests. I am amost sure she will have the surgery because we have not seen any new movement for some time. I'll ask this question to the DR but thought I would ask y'all.
For nerve surgery people claim the nerve regenerates at an centimeter a month. Well one inch = 2.54 CM and 1 foot is 30.48 centimeters. Thats over two years!! I have also hear that muscles atrophy in one- two years? I am guessing she may need muscle surgerys when she is older (2-4 yrs)? Maybe I'm off, maybe some of you have insight on this?
We are doing 1+ hrs a day of ROM, but maybe we need to step it up to help slow the atrophy? OUr OT and others have said it best to do it every diaper change which we normally do, if she isnt too cranky.

Thanks in advance for any insight!!

Andy

Hi Andy,
Your daughter may require tendon transfers along the way however only time will tell. As long as you keep up the the therapy and maybe suggest trying some e-stim or something, you can keep the muscles as strong as possible for the nerves to have time to regrow. The rate is about a milimeter a day so thats 28-31 mm a month which is just over an inch a month. Anywhere from 1-2 years is optimal recovery for a small child.

Does that help?

Amy 22 years old ROBPI from MN

Regarding the secondary surgeries (muscle transfer etc..) there usually is not really a time frame on those. Until you see the results from the primary surgery (nerve graft) I would try not to think about the other surgeries only time can tell. Just keep doing the ROM as often as you can, it is hard to do a lot of therapy when they are so small. My daughter loved bath time so we also did it during that time. As for e-stim I believe that is no longer recommended for the little ones, I could be wrong on that but I am fairly sure I thought I read somewhere that it may cause more damage then good on little ones, hopefully someone else can say if I am remembering that right or not. I would wait until after the surgery and healing has begun before you think of doing any of the other type of machines as well but your doctor would be the best one to ask. Again when they are small just keep doing the ROM to keep everything from getting tight is really all that you can do in my opinion.

Best of luck and keep us updated.

Angie

Hi Andy,
I have not been on for quite sometime but I do remember your little one. My son is now 12 and we are dealing with a contracted elbow (you may have seen my other posts). It is not bad, but enough to potentially cause problems as he is still growing. My advice to you: the next step is to look into splinting her arm at night with a flexible/molded splint; your OT should know about this. Our son had a splint on and off from the time he was 4, but, we were not as faithful to use it religiously. No one really stressed the importance and what could happen if it was not used. The tendon and the bicep can get tight very quickly; night time is a good time to allow the tendon to stretch because the baby is relaxed. She may be too young and may not be bending it on her own at night, but I would say she would need this someday. Hope all goes well.
Stephen's mom

My mom hatted that split , she got tired of doing it at night. She did try more to use pillows and stuff animals to support my erbs, Looking back I think the splint would of been better during the day than at night. I never had surgeries nor did I splint later in life. So to ( splint or not to splint and how long is a twighlight question for sure, I benefit in my life by stretching my limitation and cushioning when I could( Maybe)?? in the long run this may of help me not gaining my atrophy in life for me?? Who knows

Best wishes and trys,

Tom

Thanks for the replies.
It's good to know that the nerves heal and grow faster then I thought. I wrote the first post somewhat franticaly. I get way ahead of myself at times and think to far ahead. I am not familiar with the spilnts, but our OT had Lily wearing a hand brace for a couple weeks. At our first vist to Mayo the doctors said theres no reason for it and she didnt have to wear it. She does seem to hold her hand in the "waiters tip" position often, but she also can extended all her little fingers at times too. Thanks again
Andy

may be to early but try to get an e-stim machine to put on the arm and shoulder every day...co-ordinate this with your ot and local doc...the ot can teach you exactly how to use this...just from my experience you might have to fight with your insurance carrier as to the necessity of getting this but be persistant, bcbs fought me on this for quite a while but eventually paid. they're about $2500 and the pad are $80 per month...not cheap if you're paying outta pocket. but prevent the atrophy is so paramount in the overall recovery...good luck. and just so that you know....you do get through this...my dd had a sever injury ...nerve grafts, mod quad, muscle/tendon transfer/can't even remember them all but in all there were six surgeries...and there may be another....but she is doing well...

I thought I should write this here I have a question? You know I am very how you help each other here. Do you do this by the limitation Gust interested I like the treatments and the big words for them, I am so glad things have change for the Bpi injury. My nerves never grew back,but I have Erbs they were torn to bad,But you guys are AWSOME helping each other , its like a road map of hope. Even tho in the 50s , There were no treatment then with big words , But reading my post now I can tell you by life experience with erbs it still works out to for sure . I can offer to share how to do thing with Bpi issues growing up If I can Just ask

Best wishes and trys,

Tom

I got a combo E-stim/Tens machine for $800 (Canadian). It does both function which I find useful. I got it for under $300 as it was medical overstock/refurbished. Mine was new not refurbished, but the company that sold them had both. I love it. It works well.

We are happy to anounce that our little Lily (3 month) has had a new movement. On wednesday 12-23-09 she lifted her whole arm off the ground. She was waking up from a nap and stretced her arm up about three inches off the ground. We have not seen her move it while awake, but everytime she wakes up from her naps we see her raise her arm. I am still somewhat optimistic because she may be using her back shoulder, instead of her upper shoulder muscles. I don't know?
Anyway ,this was a great Christmas present !!!

Andy