United Brachial Plexus Network, Inc.

And I'm glad to have found this site. I'm 56 years old and have been dealing with this all my life. My mom told me I was a breech birth & I was paralyzed on my right side for a while & my shoulder blade even stuck out for a long time. She exercised me as a baby & I learned to compensate in movement & as a result not many people could tell that anything was wrong with me. Except for certain people, like the catholic teacher who was mad because I could not put my arm on my waist correctly when singing I'm a little teapot. Gym teachers my whole life told me I was a slacker because I could not do certain things. Everytime I tried to do a cartwheel I feel to the ground. I just came from a doctors office and the doctor told me to get over it. I feel like crying. I know nothing can be done about this, but I do want the label to be put in my medical file, but the doc don't seem to want to do it. 12 years ago I had an arthroscopic test done to my shoulder to show how much rotation I had. It showed almost no rotation. I was told nothing could be done about it. He told me it was probably from when I was born from the breech birth, and said the brachial plexus nerves were all messed up. I even have the "waiters tip" hand. The neuralagist I just came from stuck a pin in hand & said since I could feel it, I didn't have any Erb palsy or bracheal plexus problem. I know he is wrong, but under my HMO he is the only doc I can go to. Like I said I know nothing can be done, but I want it on my record what is wrong with me. Like I told the doc, if I was to get arrested (which I don't plan on doing) they would break my arm trying to put handcuffs on me behind my back. He told me I just have weak muscles!!! Now I don't just feel like crying, I am crying. I'll come back to this site later when I can act more grown up.

Oh please don't cry its not fair to let others affect you like that. As I tell my 15 yr old who has a right BPI with no function it doesn't matter what others think or say about you its what you know and feel about yourself that matters. And after 15 yrs of doctors and seeing many in different states a lot of doctors claim to be experts and aren't and some even look at Frankie and ask what BPI is. I have found that in a lot of cases a good OT/PT can be a big help and also know what doctors to see. Frankie has an HMO and did you know if they can't provide you with a doctor to help you with in 50 miles you can go out of network for a specialist. We live in NJ and Frankie has had 1 surgery in NY and 3 in Texas. You have come to the right place for info on what doctors are the best and also about how others treat you I'll bump up one post that dealt with names other have had to deal with and just remember you are here now and you will have more support then you'll know what to do with I know I do and its the best feeling in the world so please don't feel sad for another minute just keep posting and you will get the answers you are looking for. Mare

Dont cry!! People can be stupid sometimes, and doctors are some of those people! I'm glad you found us! hopefully you find the support you are looking for here, its okay to act like a kid forever if you want to!! hehe!
~Mel, 20, LOBPI

I remember last year a bpi doctor looking at my 15yr old son and telling him there was no way he would ever have function and he needed to forget about it and move on with his life and this was a popular BPI doc. Frankie later went on that year to have the mod quad surgery and did gain very little movement but it allowed him to sleep with his arm above his head where before it was under his stomach and very uncomfortable he feels just that was an improvement in his quailty of life. he does have to use the right hand to move the left up there but before his muscles were so tight you couldn't get his arm away from his side. Mare

As I read your post it reminded me of the very first time I saw a specialist as an adult. I was 32 and just had my third child. My arm and hand were numb, tingling and my fingers were curled. He told me I could not have had Erb's Palsy and if I did it was probably a very mild case. Just to make me feel really good, he added that it was to late to do anything and why was I complaining.
I cried all the way home. I did not know I had any hope of gaining more function till this jerk smashed all hope. I cried most of the next week because I felt like a big baby. I was sure others were much worse and this jerk made me feel like a whiner. I called my family doctor to see if he had my records. I had not seen him for several years because we moved away. He was so angry when I told him about this exam, he asked for the doctors number. He had me hold on to line and I heard him read this jerk a huge riot act. He told me it was a miracle I ever moved at all and that jerk had some nerve and was way out of line.

Would you please send your name & address to Nancy@ubpn.or and as for some back copies of Outreach our publications. Please bring read them and bring them back to your doctor. Did he do an MRI or and EMG... if not he cannot possibly know what nerves were injured and what were not. Boy did your post remind me of a time I though I forgot. I was so angry when I found UBPN and realized... not only was this doctor a jerk but so uninformed. I have all of my nerves impacted and Horner's Syndrome so it's considered a serious injury.

I am sure he made you feel so small and it's really due to the fact that he lacks the medical knowledge to diagnose bpi properly. Please come here and vent all you want... we have all been through similar circumstances and understand your pain.

Chin up and feel better.
Kath robpi/adult/68

I want to thank everyone who responded to my post from the bottom of my heart. You will never know how you much you lifted me up. I have put this site on my favorites list and am going to follow suggestions made. You are all angels! I really didn't want to whine, and I know there probably know there isn't much that can't be done, but it's just nice to know that there can be a diagnosis sometimes, and that you're not just a wimp and cant move your arm because you're a slacker and don't want to! Again, Thanks, and I will be talking to you all again, I am sure.

Keegers,
We are from Illinois, my son is 9 1/2 with a ROBPI !!!! Where in Illinois Are you?
We are in ZION !!!

Gayle mom to Brandon 9 1/2 ROBPI

You never know what they can do until you see a bpi specialist or a really good doctor and PT/OT just in the last 15 yrs since my son was born they have started doing new things please see at least a physcal therapist you maybe very surprised Mare