United Brachial Plexus Network, Inc.

HUGH!!!!! Alexyss has been experiencing some problems after her surgery 3 months ago. Her shoulder is sloping, her arm swollen, her scapula winging more, and she will not bear any weight on her arm(even with assistance). So, we went to the nerve doctor. She said she did not see any problems with Alexyss at all! I had 3 reports from 3 different therapists who said the same thing. The doctor got mad at one therapist and called her and was very unprofessional about it. The doctor also had to ask the definition of sloping when I was talking about Alexyss's shoulder. I am so MAD!!! If any more damage comes to my child because of negligence from a doctor who could have prevented it, I am going to lose my mind. Then at the end of the visit, the doctor said that Alexyss's bpi was not caused by the OB, but by the contractions. I said not according to my husband. She said she could see if the nerves were torn from the spine and the baby had fractured ribs then it would be the OB's fault. I reminded her that Alexyss had 4 broken ribs(although her nerves were not torn in any way). I hate doctors who think they are above and know all! There's no way around it either! What to do? Thanks for listening to me.
Tracey

SCREAM....you do know that doctor's will usually protect each others....why do you think that they call it practicing medicine..think about it

I understand your frustration. It is so nerve wrecking to have to deal with drs. with this attitude. It is troubling me that more and more drs. (not just the ob's anymore but the drs. who we go to for help for our children) are dishing out that line about this happening in utero. Do they get memos from some medical group or what? It defies reason that this can happen at this rate inutero yet if they say it often enough people will believe it and those people believing it are sitting on juries. This makes awareness all the more important.

How bad was your daughters injury? If it was severe and she had nerve grafts it will take awhile to see alot of results. The nerves grow slowly, I believe one inch per month and it takes time to get to the length of the arm. My daughters injury sounds alot like yours. She had 3 broken ribs and during her first surgery at 11 months and 3 weeks, they found 2 neuromas and 3 avulsions.We also didn't see alot of results at first but now she will be 6 years old next month and we still see progress. We really didn't start to see alot of progress until we started her with TES at night at the age of 25 months.

Yes the doctors can have a way of pissing you off, especially when you realize alot of them really don't know and try to act like they do and you have to learn through your own research and tools like this board, andf then YOU HAVE TO EDUCATE THEM. That's what I've had to do to get things from insurance, therapies, and even referrals from doctors.Print everything you can from your computer and take it with you. Sadly with our medical system doctors don't have time or just don't get continuing education. I know it seems like a daunting task, but you are your child's only advocate.I too get tired of the fight, but just looking at my child and what she deals with everyday is what gives me the strength to keep going.

Sometimes the anger can be your friend. I haven't really dealt with it yet, but it also seems to be my driving force at times, and I guess that can be a good thing in a way.Just know you're not alone. Most of us are in there with you.

Hope all goes well today. Get out of the house, got o church if you do that,and try to make it a happy one.Hugs, LeeAnne

LeeAnn,
Thank you for your support. My daughter did not have avulsions or anything. She just had a lot of scar tissue around the nerves. She did not need a nerve graft. The nerve doctor says there is nothing wrong with her. She said there is no swelling, winging, or sloping. And you can see it plain as day! I think my anger is going to end up getting me in trouble. If an injury is less "severe" shouldn't you see better results than going backwards?
Tracey

I think that you should get a 2nd and maybe even a 3rd opinion.What did they actually find in surgery? Did they check the whole plexus. Michaela's avulsions were all lower, where her ribs were broken, and that is very rare and may not have been looked at.I would also ask the surgeon for a operative report telling you what was found and exactly what was done. Don't let them tell you no, you have a legal right to those reports and you may need them in the future to go to other doctors for opinions or if you should happen to move to another location.Until you have the complete information, you won't know anything for sure.Was the doctor that examined her the same one who did the surgery and is that doctor a BPI specialist?When we changed insurance the doctor who did Michaelas nerve grafts was out of network, so the insurance company sent me to 3 different orthopaedics who all referred me back to the original doctor so they approved her even though she was out of network because she was the local specialist.Get the other opinions and ask them if they don't know anything about this kind of situation who they would recommend.That will give you some answers as to how qualified this doctor is for BPI. Hope I'm helping you here. If you have any other questions feel free to e-mail me. LeeAnne

GET ANOTHER DOCTOR

if your child has a bpi there will be sloping of the shoulder I dont think surgery is meant to address that anyways, but im not sure what you are talking about -doesnt surprize me to hear of a child who had surgery with no nerve tear-we all hear about kids being opened up only to find "there was alot of scar tissue" but I cant tell if the surgery your child had was BPI surgery anyways from your post,
Broken ribs might indicate a birth trauma/emergency situation that may not have been your OBs fault by the way...

They found alot of scar tissue. Her shoulder had become dislocated. So, she had mod-quad and brachial surgery at the same time. I had an orthopedic surgeon doing her arm and a periphel nerve surgeon doing the brachial plexus. They did an EMG on her muscles right there and she said the only one that was weak was the supraspinatus muscle. The lowest you can go is 20 and hers was right at 20. Everything else tested out great. Everyone here recommends this doctor in Dallas, TX. We have even been to Houston and they said she did not have nerve damage and they were not going to fix her shoulder until she was 15 months old. Our orthopedic doctor said that we have a month at the max before it gets dangerous for leaving a shoulder dislocated. The periphel nerve surgeon works on a lot of brachial plexus patients. So, I am not sure. I am stuck! Thanks for your help!
Tracey

Alexyss had 4 broken ribs and a broken left arm. The surgery was mainly for her dislocated shoulder which was sloping then too. It was caused by the nerves not functioning properly. So, what this tells me is that since her arm has gone back to the way it was before the surgery, that there is a problem. After she came out of her splint her shoulder was stable and looked the same as the other one. Now there is a big difference. Alexyss had a mixture of mod-quad and bpi surgery. The only thing the nerve surgeon did was remove scar tisuue and EMGed her muscles. The whole situation was my OB's fault b/c the baby was not down all the way and he still wanted to go for a vaginal so he reached up in me and pulled her down and then she got stuck on my pelvic bone. But, I understand where you are coming from. I hope this helps you understand where I am coming from now...
Tracey