United Brachial Plexus Network, Inc.

Can anyone give me the true definition of serve BPI. I feel like when the Dr. say this that I can't really believe that this has really happen to my child. She's 21 months now. She can shrug her shoulder and that's about it. She was set for nerve grafting surgery last November. But during the surgery the Dr decided not to graft. But to remove as much of the scar tissue safely as possible. Anyway she can not lift, bend, or raise her right arm nor has she had any hand, wrist or finger movement. I would just like to know what do I do from here. Dr has said nothing they can do for her. So now I'm left with How do I help her adjust to this life long injury. I really love the information that I get off of here. Anyone that can help me deal with this. Thank U, in advance. She has seen one of the Best Dr in PA.

Has your daughter seen a BPI specialist? I know you stated that she has seen one of the best doctors in PA, but I was unclear as to whether this doctor specialized in BPI injuries. If not, the best advice any of us could give to you would be to take your child to a doctor who specializes in her injury - not just pediatric neurology - BPIs, specifically. There are many interventions, sometimes little known to doctors not directly in the BPI field, that your daughter might be a candidate for. '

This is such a hard journey. I wish you much success in finding help for your daughter.

Nariafaith,

I assume that you saw Dr. Kozin. Without review of the medical records and based upon your description of your daughters limitations it seems that she has a severe injury most likely involving 5 nerves from c-5 through t-1. The limited hand movement would be from an injury to t-1. Each of the nerves from c-5 trough t-1 effect different elements of arm and hand function. Again, it is possible that when the doctor opened the site he found avulsions of the nerves. An avulsion is a tearing of the nerve out of the spinal column. This differs from a rupture often with a neuroma where the nerve is broken but still in the spinal column. Surgeons can attempt to graft the rupture but cannot graft the avulsion. That would be a reason for not doing the grafting.

I would be pleased to speak with you directly about this and help you understand the medicine. If the surgeon was Dr. Kozin I have a very good relationship with him and would be pleased to speak with him and obtain more information for you.

Ken Levine
Klevine@Klevinelaw.com
617-566-2700
www.Klevinelaw.com

Ken:
not to split hairs here, but an avulsion can be grafted. it however needs a nerve that is viable to be grafted to. Juliana had complete ruptures to c-5 an c-6 and avulsion to c-7. the avulsion was grafted to c-6, which of course had been grafted back to it's root, which still existed. it was successful in giving Juliana function.

Nariafaith:
I encourage you to see a few doctors. I know it is difficult, time consuming and can be costly, but it is worth it. if you go to the medical resource page of this website, you will find doctors who answered a questionnaire. i have always found them to be "user friendly". You can email them and they will respond.

Keep asking tons of questions and don't give up.

We've used Dr. Kozin too (if that's who you went to), also Dr. Waters (boston), Dr. Price (nyc), Dr. Pearl (la) and would go ANYWHERE to learn more and pick brains! It also helps to learn about nerves and muscles.

good luck,
claudia

Thanks so much for the information. And Yes it was Dr. Kozin she saw in PA. He was so great with her she took right to him. I only wish that he wasn't so far away. We live in Oklahoma. He's my final stop for now. I received his name from this site. Being that he's the best in the field. He's going to see her next year, but for now there's nothing that he can do. Maybe when she turns 7-8 he will look at muscle transfer. She has also seen doctors in St Louis. Oklahoma and Ft Worth Texas.

Claudia,

yes, you are right. I was trying not to be too technical in short note. Thanks for being more clear.

Ken

I wanted to let you know that we are in Oklahoma as well and our daughter is 9 yrs old. We go to Dr. Nath in Houston and I would love to talk to you more if you would like to talk. Please feel free to e-mail me I would love to meet you and help you in anyway. Sandy