United Brachial Plexus Network, Inc.

I really hope to, it'll be nice to finally see you guys...my only concern is I may not want to let ya'll go at the end.
About the damage to the "good" arm, same here...I just chalk it up to "have to"
I'll be seein' ya'

Hello everyone. My name's Bill and I just found this site today. I'm 49 yrs old. Never had use of my right shoulder or ability to raise my right arm (erbs), good use of right hand but cannot fully extend my elbow. Like many, I overcompensated by becoming above average to very good in most sports despite my physical "challenge". Made my college tennis team (I actually was able to toss the ball using my "bad" arm and developed quite a powerful serve for a hacker. I still bowl; carrying a 186 average.

Around 11-12 yrs ago, came down with symptoms similar to rotator cuff tear in left (good) shoulder, and now cannot use it as I used to. Orthopedic surgeon said nothing could be done at the time, and it has gotten slightly worse since then. I take forever doing things like getting ready for work in the morning, and my life seems like a constant physical struggle now. Cannot reach for items at the table when eating, and cannot even lift a glass to my mouth to drink without using both arms. On top of that, last summer neck pain began to affect me and still persists. Diagnosed by another ortho doc as arthritis. Ibuprofin (600 mgs) is the only med that seems to relieve it somewhat.

Well, my new PCP just referred me to a rheumatologist, who I saw this past Wednesday. He conferred with a neurologist on the same floor, and they've set up an MRI for me next week. Talk of sending me to a shoulder specialist (in NYC?) depending on outcome of MRI. For the first time in the last ten years, someone has given me hope of regaining the strength and full use of my left arm. (Even having one good arm is a positive thing at this point in my life.) I'll let you know what happens. Good to find this board! Bill

Welcome to the Boards Bill

Sorry to hear your arm is so bad... My arms were so bad three years ago that I began to research about Erb's Palsy on the internet that is how I found UBPN... and tons of new friends who could help with information...

At that time I could barely use either arm and I went to a bpi Gathering (Picnic) and the doctor told me it was rotator cuffs... I continued with massage therapy and started the round of doctors... Neurologist, Arthritis, Orthopedic...
I have been going for physical therapy... the first round I went for I had 30 visits... during that time I had slight chiropractic adjustments, myofacial release and Active Release Therapy... It has worked wonders for me... my shoulders are so much better...

I had to learn to adjust my lifestyle... No lifting anything heavy... much more rest and I get Vitamin b-12 shots and take Multi vitamins and B-100... I also stopped working and filed for Disability. I should have stopped working at least ten years ago and saved my unaffected arm from all the wear and tear and overuse.

As a teenager my family doctor gave me b-12 shots and they seem to stop the misfiring in my right bpi arm... I have overused the healthy arm to the point that it is the painful one now and I have osteoarthritis in both hands of course worse in the unaffected hand… So I take Relafen for that… I just started on it because of the burning and stinging in my hand and shoulder…

Last June I was walking and that darn wall just jumped out and hit my elbow... back to Physical Therapy... again another 30 visits… We will always need some form of PT just to keep our necks loose and our arms moving… It seems when I stop for long periods I get tight again… Probably should go at least once a month for good health and maintenance… that is at the point I am now… and of course you should be stretching you bpi arm as much as you can and exercising it… if you can…

Most time PT did nothing for me but this time I research and brought all the information from the Awareness Material on this site with me... The PT was open with me and he told me he had never treated an adult with this injury so we learned together... Of course it is hard to find PT with experience and he both Chiropractor & PT he also uses a multidiscipline approach to my treatment. Gentle manipulations, heat, myofacal and ART therapy it helps keep my neck loose and my spine straight.

I don't know where you’re from but you mentioned NY and March 8 there will be a Gathering in New York on Long Island and there will be a bpi specialist.

UBPN Camp will be Labor Day Weekend and a number of adult/obpi/ tbpi are planning to attend it is not just for the kids...

It is very important that you read and learn all the information on bpi... Since you are birth injured I suggest you read all the information on the babies this will help you to understand just what happened to you and perhaps the extent of you own injury. http://ubpn.org/ubpnweb.nsf/web/what.html
Then check the medical Resource Directory for information on a BPI specialist near you... Most doctors have not enough information on our injury and have never treated anyone with this injury. There are no long range studies on how this birth injury impacts the entire body... so many still think it is just an arm injury.

Again welcome to the board and please any questions you have someone here will surly get to you with an answer if they have it...

Kath

Kath,

Thanks for the welcome, sorry I didn't get back till now. I've been reading the various posts and see that I'm not an unusual case in that my "good" arm is experiencing problems from overuse in my adult years. The diagnosis twelve years ago was a "rotator cuff impingement", but the difference between what I've been reading and my experience is that I heve never had any pain in the shoulder. While there was always weakness in some uses of the non BPI arm (certain backhand shots in tennis, etc.), I awoke on that day twelve years ago and the arm was "dead". (I had spent seventeen hours straight the day before writing long-hand to complete a take-home exam in my Masters program.) I regainded some function in the weeks that followed, but my arm was never the same. No pain, however, not then and not now.

The pain I have bagan last summer, in my neck on the BPI side, and that has led to the arthritis diagnosis by an orthopedic specialist, physical therapy with no appreciable results, and my ongoing evaluation by a rheumatologist and neurologist. Had my MRI last Wednesday, I go back for results on the 12th.

I'm grateful to have found this board, if just for the fact that I can speak more knowledgeably on the subject when dealing with the doctors in the future. I live in north Jersey, so I am considering the March 8th get-together. At any rate, I'll check back in after my appointment on the 12th.

BTW, it was a weird feeling reading your opening line about being sorry my arm was so bad. I never really think about it that way; I was just basically giving a clinical background of my condition. Since I've dealt with the BPI my whole existence, it just seems like a fact of life with me. Like most here, probably, I experienced pretty harsh treatment as a child from other children. As a result, I became fiercely independent. (I own my home and live alone, maintaining it myself. Cut the lawn in the summer and shovel snow and use the snowblower in the winter - just dug out again last night.) The down side to this is that I tried to pretend I was "normal" and wouldn't talk about my condition for the first thirty years of my life. And now I am realizing another possible down side is that I may have worn out my unaffected shoulder by doing too much. (I don't know how I could have avoided this, though.) Well, I've gone on long enough; I'll update everyone later this week.

Bill

Hey Bill

I think all of us here can relate to the independence and never talking about our arms... not even to family and close friends... must be a bpi trait....

I live on the northern NJ line..... really one street away... Pearl River, N.Y.

I hope you can make it to the NY Gathering... I am going and Nancy and I think a young man from Flusing who just found the board and of course my husband so you won't be alone with the girls... but it really is a positive experience for adult/obpi to meet other adults who have the same life experiences... it last Oct... Nancy and I met up with Stephanie... and really found out we share a common sense of humor about our arms...

Hope to see you there.... What town are you from - I use a great PT in Fairlawn NJ.... He is just so interested in bpi and treats a young tbpi... This is the first time I can truly say that PT helped me...

Let us know about your test results
Kath

Hi everyone. I am a Mom. My son will be 11 on March 4th and has left BPI from birth. (Light Horners as well) In Oct 2001 he had surgery at Texas Childrens. A Mod Quad. This was to help his wingnig and help him to be able to raise his arm higher. It was wonderful and we had great results. He has limited use of his fingers and wrist.
In Nov of 2002 he had a muscle transfer done to his forearm. Called a Gracillis (sp?) muscle transer and a tendond transfer to help hold his wrist better. It is up to a two year recovery and therapy period . Right now we are using the e-stim machine to help fire up those muscles. It seems his brain does not know quite what to do with the muscles. Not quite sure what to make them do. He has come a long way and he is a great boy! Wish us luck in our long journey please.
Also....I believe it was Carolyn Young who said she could tie her shoes.....this is one of the few things we have not mastered and I know Logan wouldbe thrilled if we could learn how dto do this. Any help in this matter or if you just want to talk...please e-mail me ...LadyOnna@aol.com.
Thank you all for listening to this Mom's rambling.
JoDonna Boisvert

Hi JoDonna, here is a link with a couple of suggestions for one handed shoelace tying. It may be that Logan has some use of his hand and won't do it this way but they might help http://tbpiukgroup.homestead.com/one_ha ... tying.html
I have a completely different way of doing it but no pictures! From talking to other tbpi most people seem to use the method in the second link on this page.

I just thought it was time to move this up again for any new OBPI/adults to post to

Kath

Hi, everyone! Thanks Kathleen for moving this topic up. I was intimidated by how many posts there were but decided to see what it was all about anyway. Glad I did. You guys are so funny! You have me laughing out loud and I'm constantly turning to my husband and saying, "you gotta read this, these guys are great!" I'm the new mom with the newborn that has right obpi. So many times I just want to cry when I think about what he'll have to go through and the difficulties that are still ahead. When I was pregnant I kept saying that while he was in me he couldn't get hurt. That there were times when I didn't want to deliver becuase I didn't want him to have to deal with so much of life's poo-poos. Well, I don't know what to say about all that's happened, but he was definitely safer inside. However, reading your posts has made things a little lighter for me. To know that there will be people around that he can relate to and laugh with makes it so much better. At least for me. He will still have to deal with his own emotions and questions. I just hope the boat hasn't left the dock yet (from your earlier posts) growing up with me I know he's going to want to be on board. And, growing up with me he'll probably want to do everything! What's so nice too is that there are other new mothers out there and it's almost like Josiah will get to grow up already knowing other people his age with the same thing. It's like you guys are an instant family! Just add humor! I can't say enough how much I enjoy reading all the stories. What a supportive and loving group. Being stuck inside due to whether and because I'm just WAAAYYYYY too tired to go out except for appointments, makes one want to go very crazy. But, I get to come here and my crazy gets to join with your crazy so it's all ok again.
All righty, then. This has been a very long post.
Thanks for everything.
Oh, I've read that a lot of people can't or have difficulty turning their head towards the injured arm, my son is always turning his head away from it. He can turn it towards, too, but mostly he stays away from it. When I try to turn it the other way he strains to keep it the way it was. (Whew, breath needed) Is this normal newborn behaviour or could it have something to do with his arm?
And where can I get the definitions of the stuff you guys talk about? Supinating? Wing something? All that kind of stuff. I want to understand and then be able to talk with the doctors. Thanks!!!!
(sorry so long) (Oops, that just made it longer!)

Josiah's Mom

I am glad you enjoyed reading this long post and I am especially glad to read that it has helped you.

When you are looking for answers on treatments and surgery you will get a better response on the General Message Board that is the place parents share information and seem to go to first.

Most people posting on this message are Adults who were injured at birth and most of us have little to no knowledge regarding surgery... As we thought that we were the only ones with the "rare birth injury" until we found UBPN and the Message boards....

I found this group only 3 years ago and learned so much about medical terms relating to my personal injury as did the other adults who come here to post...

Check out the home page... Awareness etc...
Reading those pages will really help you to understand and ask tons of questions...
This board probably will not get you the answers you need on treatment or medical questions posting them to the General Board will get more reply....

Glad to see you came here and found UBPN you will need the support and so will Josiah... If your area has any gatherings please try to go to one to meet other parents and children there is so much to be learned from each other at these gatherings...

I said this many years ago and I think it is important to remember... "We are so much more then our arms"....
Enjoy your baby time moves so quickly and before you know it you will be a grandmother like me... and he will be all grown up...

Kath