United Brachial Plexus Network, Inc.

My daughter is 13 years old. Our insurance company refused to pay for anymore therapy sessions, so she has not had any therapy for approximately 4 years. Our doctor does not really seem concerned. What kind of long term effects will happen or what should I be aware of?

Kathy,
I am 31 years old. My arm always kind of hung limp until I realized that I should start using it more and exercise it. I didn't know really anything about this type of injury nor did my mom. Throughout time my pain in my shoulder has become quite worse. My hand and fingers have become slower to use and almost numb but not quite. It's like they really don't want to move on their own. My arm has gotten progressively worse over the years and has shrunk about 2 more inches in the past few years. I just found this website in April and have been pleased to find out that I was not the only one with this type of injury. I am getting surgery in Houston on Sept.11. I leave on Tuesday. I'm nervous but excited at the same time. Has your daughter had any surgeries? I'm sorry to hear that your insurance won't help you anymore. If there is anything I can do or explain it in more detail later on let me know.

Kathy

I am really sorry to hear you are having a problem with insurance. I also had problems with mine when I went for more after using so much the year before. I actually walked through a doorway I was not careful and hit the door jam with the bpi arm elbow (doorways seem to bite many of us on the way through) my doctor wrote on my script that is was complication from ERB'S Palsy... so they refused me! I called and argued and fought and finally found out and I quote " you are cured of Erb's as far as we are concerned" I was shocked to hear him say this as I still cannot supinate... but that did it for me... I told him he is not MY doctor, nor did he examine me and he was depriving me of proper medical attention. I got my script and the rest of the pt I needed to retore my original range of motion.
I was told that putting Erb's Palsy on a script prevented me from getting PT... but tight neck tight arm and sholder pain etc would be the way to go. I think it is silly because we would not have these problems except for the Erb's Palsy but many times it is related to secondary conditions due to compensation. So please try to have your script worded differently and see if that works because it is really contracture's etc that cause us to tighten up...
hope this helps or someone with more information on insurance companies will chim in.

Kath
I am right OBPI

That's a very interesting point that Kath raised. I don't know much about insurance, but if you go in for the secondary issues and not the Erb's palsy, I wonder how they would bill you. For example, my sister was in a car accident a few years ago. She still has tightness in her neck from whiplash. If she goes to PT for neck soreness, do they still bill it for the car accident or at some point do they just call it neck stiffness? I went in for PT for neck stiffness that was caused by headaches, but my PT thought it was the other way around - so how do they bill that? I wonder if you tried a new PT and said she had contractures and tightness, if it could be covered if they just left off the Erb's diagnoses??
Many hospitals have forms to fill out for alternative coverage (I know ours does for when insurance won't pay -- our insurance has limits for each year). You might consider trying to find a specialist to have her evaluated, and inquiring about their alterative payments. You daughter may really benefit from some of the treatments that are available now that weren't around when she was younger.
In addition, if you don't get formal PT, you could still get some exercises to do at home. Are there some posted on one of the websites?
Good luck with your daughter.
Tina