United Brachial Plexus Network, Inc.

HELLO ALL,

UBPN is again attending the Narakas symposium, which is a very prestigious meeting of world experts in treating brachial plexus injuries (not preventing ) However this year is different and UBPN has been invited to peak at the symposium. It is an incredible opportunity to present who we are to the people who treat this population. We have only 6 minutes, during which we will introduce the origin of the organization, how we interact and offer support to the community, but I would like to close with what the community needs from the doctors:

Some ideas are

pain management
continuity of care

Please respond with your suggestions, and I will do my best to make sure it gets presented. It can't be a long idea, but something more like a bullet point

The presentation is May 19th, the program runs May 18-21. So we are right in the middle.

Thanks

rich

some of the people on here have a BPI due to a very long surgical procedure. (several hours). mentioning BPI as a complication before a person has such a surgery would be a good thing.

HELLO RICH, AS AN ADULT WITH A TBPI FROM A MOTORCYCLE ACCIDENT I WOULD LIKE TO KNOW ABOUT THE USE OF STEM CELLS AND AND MUSCLE REGENERATION AND OF COURSE HOW CLOSE ARE THEY TO FINDING A CURE?

It is important for the medical professionals to understand we have suffered lifelong ramifications as a result of this birth injury. Since these are bpi specialists they know about the pediatric care of children with obpi but adult/obpi are neglected by the medical profession. They would prefer to ignore our arms and more or less shrug their shoulders when we do try to engage them regarding our injury. It is very frustrating for us that no one seems to understand our pain and/or challenges.

Part of me feels it is impossible to include anything about adult obpi because their probably not interested since we can't be surgically repaired.
Good Luck and have a safe trip.

I agree with you Kath! Kath, when I was at the Narakas meeting in Puerto Rico One Doctor said that there was no pain with obpi. When they asked me if I had anything to say they did seem to listen to me when I spoke about pain.
Rich ,Please remind them that kids do grow up. Pain is a real issue. It would be great if a long term study was done.

i could not imagine this injury with no pain. whether as an infant or at 90+ years old. that is crazy. i really dont know a lot about OBPI, but the injury itself is still a damaged nerve and damaged nerves hurt like h****. i totally agree that the adults who grew up with this needs more help. we all need more that can be done.

I know I'm interested in what other areas of the body a brachial plexus injury can affect. Like a domino effect. My son has had other issues with weight bearing on his legs equally, etc. and I always wonder is it a domino of his obpi.
Are they more at risk for things like mild scoliosis because of compensation in their back? My son's therapists have "theories" on the why and to them it seems some of his other issues coorelated with his obpi, but are their solid, concrete answers?

I guess basically my questions would be: What other things are our children at risk for (as they grow) by having an obpi? What kinds of things should a pediatrician keep an eye on during check-ups that don't "directly" involve the brachial plexus, but could be a factor in a bp kid?

My son Nicholas has a LOBPI. Unfortunately, he is in a small percentage of children whose surgeries did not help his injury. His left arm still has no muscle tone and hangs flacid. I feel that it is unfortunate that once your child is no longer a candidate for surgical intervention that doctors do not typically follow up with them, unless there are issues. An OBPI is devastating in many aspects. When you are told your child is no longer a candidate for surgery, the care should not stop there. BPI's come with life long issues that our children must cope with. As our children cope, the parents also must cope along with them. It is difficult to be sent home with no other appointments and no other plans for care. It is vital that doctor's understand that there are cases such as my son's in which they need ongoing supportive care and examinations. It is not an easy task to go home after many surgeries and feel you have no options. It makes you feel so many emotions and that you are alone in helping your child to understand and grow with their OBPI. So, I just think it is important for doctors to realize that there are those rare cases of no regain of function with surgeries and that the care should not just end with that. It would be so comforting to have at least a yearly examination scheduled so that you feel that there is still some hope.

Attached is a draft of the powerpoint presentation to be given at Narakas meeting on May 19th. Thanks for your input!

Have a safe trip and Thank You for sharing your powerpoint Presentation,Rich. I'll be thinking of you tomorrow.
Carolyn J
LOBPI/72++++++