United Brachial Plexus Network, Inc.

In need advise...My 11 yo daughter has ROBP, Her elbow is contracted at 90 degrees. We have tried botox, casting, splinting etc..The older she gets the less she tends to use that arm. We have seen Dr Kozin who did not recommend surgery. We recently moved to a new state and the MD here suggests an elbow release.. Has anyone tried this. I am reluctant, but feel like it is worth a try.....

How useful is your daughters hand and is SHE willing to put the time and effort into ther therapy after? Surgery at that age is hard (speaking from experience, I had surgery at 10 and 12).

Be sure to ask the MD what can be lost from the surgery and what is expected to be gained.

In my opinion and experience, a surgery without the therapy after is like wasting a chance at further recovery. Talk with your daughter a lot about this and see if she is up for the challenge.
Also ask the doc how long they have to do this before her joint freeezes and they can do nothing.

Good luck!
Amy 21 years old ROBPI from MN

We did this surgery on our daughter and would not do it again. It caused a HUGE weakness in her already weak biceps. Strength that we can not get back.

As well, even after this surgery, the contractures often return. This is happening with our daughter now. Her once straight arm is bending again.

I would go to MANY doctors for input on this surgery.

good luck,
claudia

Frankie now 15 saw Dr Kozin last summer for his elbow contracture he also said no surgery. Then we went to Philly childrens and saw the ortho surgeon there. He said the xrays showed that due to boney growth and muscle imbalance and yrs of being contracted his elbow was dislocated at the ulnar and can't be put back in. and that no soft tissue surgery will help if there is a bone problem. Has your daughter had xrays done to check for this?? We 1st noticed it when Frankie started doing serial casting he went from 65 to 30 dergees in 2 weeks then we started to feel something weird protruding so we saw Dr kozin. Hope this helps. Mare

Hi, Thanks for the advice. We are planning agressive PT following surgery. The Md will also release the elbow joint, my daughter really wants the surgery. She is getting self conscious about it. Thanks for all the info, I am confused.

Could you please give me the name of the doctor and what state he's in Frank had the mod quad last year in TX we live in NJ and like your daughter Frankie would like to see about getting his elbow fixed. He was very depressed after dr Kozins and the other one said there was nothing more that could be done for his arm if you want my email is Tinny61@aol.com Thanks Mare

i am 24 yrs old and i have left arm brachial plexus, my left arm stays bent i have always wonder if my arm could be straighten without surgery or is surgery the only option? my arm isnt bent alot just enough to stick out and hit every door frame as i walk in. let me know something.... jessi

My daughter, Alyssa 12 years old, is having serial casting done right now. She started in late January. Every Tuesday, she goes and gets a new cast on. She started out at 40 degrees with the thing the OT measures with and she is not at 16 degrees on her own, but 5 degrees passively. We didn't do surgery because she had already has bicep tendon lenghtening done before and didnt want to put her through a 6th surgery. We were told she may only gain 5 degrees if the surgery was done by a dcotor here in IN. The goal is for no cast by summer time. Her last cast will be made into a splint she will wear to bed at night. She had a dynamic splint, but it was too easy for her to manipulate and it wasn't doing the job it should do.