United Brachial Plexus Network, Inc.

hello. I am working as a nurse life care planner, currently helping about 20 children. I have been unable to find any research literature on the subject of pain development as the children age---either from neuropathic pain, overuse syndrome, contracture, arthritis, spinal pain (scoliosis), or general pain throughout the neck, shoulder, arm, or hand. if anyone has experience and would share that with me, please contact me through the forum or through my e.mail account: sheltonk@comcast.net

I would be happy to give you some information. I'll email you later when I can collect my thoughts.

Karen

I'm sorry to say, there are NO long term studies on the impact of this injury on our bodies. It is something the medical research community has ignored.

Once a child is released by their bpi doctors they are not given any medical support or information on how this injury impacts our entire body.

Due to compensation our injury begins to affect our unaffected side early in our teens. We are supposed to be bilateral and the full extent of our injuries are often not evaluated. It is as if no one is willing to connect the dots. It is not just the arm that is injured. If you have Horner's it is our eye, face, skin and sympathetic nervous system on the bpi side.
There are so many ways that this injury alters a persons life. I think it was a good thing at times that I did not know that I would have so many secondary issues. Perhaps if OT/PT was more in-tune with this injury and the toll that compensation plays, they would do many things differently.

I always had pain and it was worse during puberty and growth spurts. Once I had children all the lifting and carrying, laundry etc... caused more damage to the unaffected side. Better OT on this type of work would greatly support the bpi injured to prevent secondary issues.

Secondary issues have been a major problem as I matured and began to age. Most OBPI have reported high pain threshold and this does not serve us well because we have had a lifetime of pain and often neglect to report pains that we should be paying attention too!

Kath robpi/adult 69


Message was edited by: Kath

Karen,
Since BPI-ers have been basically ignored...States/Health Depts have NEVER counted/kept statistics on Obstetrical Brachial Plexus Injuries. You will have to post an "Appeal" for Parents and Adult Injured, to share our LIFELONG Battles with: 1)OUR INDIVIDUAL Secondary Medical issues RELATED to OBPI's; 2)Pain ; DEPRESSION/Anxiety and SELF ESTEEM/emotional issues specific to growing up with OBPI's.

Personally, I would definitely want to know more about what and HOW you use my information if I CHOOSE to share it with. Also, I would like more information about your Nursing Credentials and education.
Thank You.

Carolyn J
LOBPI/adult age 71

Karen,
I think I either talked to you or your daughter a while back. If you need more info feel free to e-mail me on this issue.
Judy

To me there is the emotional issue by trying to overcome some way old or new limiation of our injurys . I read a lot of messages of person with this injury who did a lot in there life and have been damage more threw life. It terrible to thing how bad will it get. But you can think more about what you did overcome in your life that in the end( Maybe) you can get past some of the emotional issue but never get over your pain. I stress Its what I wish to do and I know your words are True to about over use and more pain to for sure.

Tom

As a child and teen I had no pain unless I over-stretched or overdid something (like lifting/carrying heavy things).

I never really had any pain until I hit my 30's, when now I all of a sudden have pain in my LOBPI shoulder and at times in my neck on my right side from strain/stress from using it more than the left side.

Overuse of my "good" side is a worry, so far I am lucky and have not had that problem BUT it does seem to be affecting the OBPI side.

Marieke 34, LOBPI

i had my accident 9-2-09 ,i'm in alot of pain can't do my job anymore, afarid of whats going to become of me

I am a Patient Advocate. My patient is a 65 year old women diagnosed with Erb's palsey at birth. She had no treatment during childhood. She has severe nerve damage and complications on the effected (L) side including an aphasia like effect. She is healthy and lived a productive life in every other way. She does receive PT when she has severe back and shoulder pain. We are looking for Occupational therapy and possible speach therapy for her in NYC. Any suggestions for home exercise would be appreciated.

A physical therapist and/or the OT would be the best people to ask about for exercises as no two people are injured the same way and what may be ok for one person to do may not be good for another.