United Brachial Plexus Network, Inc.

I really do not know what to say because I could go on for a long time. My daughter is going to be 6 and has never had surgery. She had some finger movement at birth and that was about it. We chose not to have surgery for alot of reasons. We went with all the therapy we could do and at 5 mos we started to see some movement in her elbow,(not much) but we were patient and we kept up the therapy. We went to a picnic in the North East once and every child there, about 50 had had surgery but our daughter. I was questioning weather we had made the right choice because all the kids around her age all seemed to be at the same level. I thought that maybe she wasn't as injurd as them. Then parents started talking and we found out that alot of these kids were not as injured as my daughter. I was shocked. They (the parents) were shocked. There was a pretty well known therapist of a pretty well known doctor there. She was only a little shcoked. Needless to say we left there never to question our decision again. She is a beautiful girl and if you did not know she had a robpi then you would never know. I am not saying we do not have our chalanges because we do. Even with surgery you are still faced with them. One question I asked my self, If we did surgery, will her right arm be just like her left arm. The answer was and is no. I put way to much faith and trust in a doctor and now my daughter has a disability. Just because you are a doctor, plumber, teacher what ever, it dose not all ways makes you a good one. Just because a surgery works for one patient it is not always good for anohter. I do the very best for my child and if it means surgery in the future and it is right for her then by all means. But it won't be done because some one said it can. My husband and I have a motto in our house. Just because you can have kids dosn't mean you should and just beacuse you can't dosn't mean you shouldn't! Same goes for the surgery thing. Just beacuse there is a surgery for it dosen't mean you should and just beacuse some one say's there is nothing we can do, dosn't mean that you don't. If you would like to talk more to me I would be happy to speak with you.

What great information and stories. Our specialist would like us to consider tendon transfer between 2-6 years of age but we'll see how far she's come at that point. She continues to improve with just OT/PT and kinesiotaping and we keep working at it. Her suppination is improving and she is bringing her arm up to about 160 degrees. We keep holding out hope that we wont need any surgical intervention at all.

Hello. My daughter, Amber, is 18 months old now and has never had surgery. We don't forsee that in the future, either. We have done OT since the beginning and some PT (she requires more OT than PT). She's started aquatic therapy about 3 months ago. She recently started using a McKie splint, too. Could anyone provide me with information about this Kinesio taping? Please email me information if you don't mind at Nursemidwife86@cs.com. I'd love the info! Thanks.

I was involved in an accident 13 months ago that left my right arm and shoulder injured what I am told is nerve damage to my right brachial plexus,I am currently seeking and concidering surgery, My nuerogolist says no due to possible complication's and I have sought out what I hope to be one of the better surgeons in this field Dr.Grossman in Miami
any input in this would be of great help thank-you

My son is having surgery next monday. I have looked for the best doctor in my country in bpi and will trust his opinion. No matter how informed I am and much people I talk to and how many posts I write I will be only doing this for three months. He has been operating and seeing results and observing children, going to conferences, reading articles and books for perhaps over 40 years. That's what beeing a specialist means. I am not a specialist but I have looked for one and I think I will trust his opinion.

We, too, have chosen not to have surgery yet for our son Nathan, 27 months old. It is really affirming to see other parents write of their struggles and choices in negotiating the difficult world of recovery after a brachial plexus injury. For so long, both on this board and at the picnics we attended, we felt kind of "out of it" because we had cancelled several recommended surgeries by Texas. It didn't seem that we could find the kind of support we needed in this community, so I've been more of a "lurker" than an active participant on these boards. It seemed that the place where I received most of my information and connections where parents should be able to talk/communicate didn't feel like a place where I could talk about my decisions for my son. I am really pleased this thread has opened up, because choosing not to do surgery so far for Nathan has shown us that things we were told when we were being encouraged to do surgery were not correct. I will bring up a few examples, in case they are helpful to other parents out there. For example, at 8, 12, and 15 months we were recommended to schedule the mod quad. We did and all three times cancelled because we felt Nathan was still improving and we didn't want to interfere with his progress. To cancel was one of the most difficult decisions in the world - every time I was crying on the phone. But, looking back it was definitely the right decision. We were told that at each growth spurt he would lose movement. He has not. We were told that his supination would not come in if it hadn't by 18 months. It has come in nearly 80-90% or so, and it didn't happen until 21-24 months and is still improving. We were told his shoulder joint would definitely deform without the mod quad. We stay on top of it with MRIs performed at Temple in Philadelphia through Shriner's and so far the actual data/picture states that the shoulder joint is not deforming. I think surgery is absolutely necessary for many children. However, I think there is a "grey" area that causes extreme stress for parents when they feel their children are doing well but professionals have varied opinions on how well they are doing. For us, Dr. Nelson in Charlotte, NC (who worked with Texas for 12 years) and Dr. Kozin at Shriner's in Philadelphia felt like the best options who were very balanced in their estimation of what surgery could/could not do for a child with a fairly good, but not full, recovery from quite a substantial injury (he did not move his arm for 2 months and did not have bicep until 5 months or so). If Nathan needs surgery, the first I would agree to is the anterior capsule release, because the benefits shown by research/MRIs look to be very substantial for a very minimally invasive procedure. Each parents struggles to decide what is best for their child. The thing I am really glad to start seeing on the posts is help, ideas, and alternative routes for parents whose child is in the "grey" area, because that is an area where decisions are very, very difficult to make.

Thank you, thank you, thank you for this thread and all the posts on it. It has literally transformed this message board.

My daughter Emily is 11 months old now and most of the people cannot tell if she was injured at birth. She only had fingers and shoulder movement when she was born. We have been doing ROM on her left arm since her birth. We saw major improvement at her 3-4 months old and ever since she has gained her other functions back little by little. I will suggest parents comparing the good arm with the injured one and do the same ROM that the good arm does to the bad arm. That is what I have been doing.

I haven't posted on here in a long time. My daughter is 3 and has had no surgeries. She was recommened for the primary surgery (being labeled as severe) but it was cancelled due to hand to mouth movement that finally came back. Six months later, we took her in for a checkup and the Mod Quad was recommended due to a slight internal rotation. She could put her hand behind her back, supinate and touch the top of her head. With the Mod Quad she would have been able to supinate better, but would have lost some function like reaching behind her back. This didn't make any sense to me. Why loose function due to a surgery that would probably spin off more surgeries? We opted not to do the mod quad and increased therapy with a focus on suppination. Today, she has had a miraculous recovery due to her strong perservence. She has an unbelieve personality that is so outgoing. Both arms measure the same length and she can do so much! I feel good about our decision. It worked for us and for that I am thankful...

Sonia- we had the same experience. Mod Quad was recommended at 11mo. our daughter could do almost everything but she was internally rotated. The drs wanted us to do Mod Quad but they also said she would loose some function and it may not address the internal rotation issue. We thought long and hard and the bottom line was they were recommending mod quad because she was internally rotated but mod quad may not help with the internal rotation at all. we decided to wait and see and I am so happy. She is now 21months and doing so well. SHe even brings her hand to her mouth with her elbow down (except when she is fatiqued). I will never say never..if she needs surgery in the future, she will get it but it will be our decision. I have learned to trust my gut feeling.