United Brachial Plexus Network, Inc.

I have been reading the threads discussing the nerve pain most of you experience due to your injuries, and it just breaks my heart. I'm so sorry any of you has to experience any of this. It's unfair.

My husband and I want to be prepared to help our daughter as she grows up with this injury. I realize there will be things I can never understand - but I don't want her to be suffering with pain in silence. I can't help her if I don't know.

Aria's is a bilateral injury. She had primary surgery on her right plexus at 5.5 months of age (multiple ruptures and C6 avulsion), and her left side has recovered reasonably good function naturally.

What her surgeons cannot tell us is whether or not she might experience nerve pain as she gets older. As her left arm has recovered reasonably good function, Dr. Kozin is leaning toward thinking she will have no pain on her left. However, what we do not know is if her having primary surgery on her right plexus will help prevent future nerve pain on that side.

Are there any adults out there who have had primary surgery? If so, do you experience nerve pain?

Sorry this got so long. I truly appreciate the opportunity to ask questions of this community.

Thank you.

Hi!
I tink surgery is a new thing. I'm not sure any "aged" person would have it. I know I'm 29 and the Dr's casted and splinted my arm so that I couldn't use it for the first (I don't know how many) months of my life. I am so glad they know better now!
It sounds like you are doing everything you can to give your daughter a chance-
I hope you get more answers, I'm interested now too!

Primary surgery existed to some extent when I was born 32 years ago. I should have had it but they discovered that I had a LOBPI too late (at the time, they thought too late was 4 months old...). I was 4 months old at the time, and they thought that anything AFTER the 3 month mark was too late. We know different now, though who knows how advanced/good they were back then in any case. It would have been nice, as I do not have hand-to-mouth or overhead.
Marieke (32, LOBPI)