United Brachial Plexus Network, Inc.

Hi,
This is a question for adults with obpi.

In seeking adequate p/t for my 8yr old with obpi, this question came up regarding future potential problems:

-degenerative injury
-postural/skeletal risks

How best can I describe and point out future and current risks/problems to someone who has probably never in their entire professional career looked after a child with obpi? Realistically, and positively teach someone what he is and will be going through with his injury?

I would appreciate all comments!
Thanks,
Gwen

Hi Gwen

I am obpi and one of the first issues regarding our posture and skeletal degeneration is compensation. As a result of years of compensation obpi begin to suffer from secondary injuries while only in our teens.
Since there are no long range study many of us are now in the process of finding this information too late for some to avoid injuries that appear to be secondary to obpi.

I have Osteoarthritis in my hands from wear and tear and it becoming worse and nothing can stop that. It is important that children be taught to use their bodies properly, well at least as best they can move.

In order to promote better posture my Mom played lots of games with me. I had to walk with a book on my head to learn to keep my head and neck straight. I also had to walk on boards or the curb on the street sort of like a balance beam to learn to hold on to my balance. I am sure that these games truly helped.

You know when we fall as children we will not put out our arms to save ourselves and this also causes injury. We bang our arms into door knobs and walls and anything else on the bpi side. I am sure now that body boundary is a problem. It seems that on the bpi side of my body I am unaware of anyone or anything there. I have no perception nor am I aware of how close something is to my personal space. If I am not reminded I would never use my right arm even for the things I can use it. I must constantly remind my self to perform tasks using my right hand. I tend to hold my shoulder high and hunch it so I must remind myself to let it down...but it is not something I do naturally.

I have problems with both arms and hands now and when I found the CTD website I was amazed to read that so many of the problems with my "unaffected arm" and bpi arm are described on this web page... Ulna nerve on both arms and radial nerve on bpi arm... TOS..... ..........just amazed that it was a web page that helped....

Also it is important that obpi not have blood pressure nor blood tests on obpi side as our veins are smaller and we are more prone to infection on that side. When our arms began to grow and heal we were not mapped the same as a normal arm so when blood it taken there is a possibility of blowing a vein that is necessary to nourish one of our muscles. That is how my doctor explained it to me. I was told as child that I was never to have a shot in my arm or allow anyone to take my blood pressure there.
..
I am not sure what and OT does with the children but it would be helpful if the children were taught not to use their hands for strength but try to spread the power throughout the entire arms and body ... and also that they must not carry so much weight on the unaffected side it does wear out from overuse. I think obpi children just keep caring everything in the unaffected arm making it work double time. A good OT will read much of the awareness material will find ways to help with posture ... hopefully he/she will be open to all the information you bring with you.

To help prevent more problems and keep my arms and shoulders protected from further injury I use roller(tracker) ball for mouse ... and keep a pillow under bpi arm when working on the computer ... my arm is three inches shorter and my pt suggested that I use arm rest when typing and using the computer it truly helps and I have less stress on my arm hand and neck and shoulders. I hope this helps and I am sure some of the others will have more suggestions. Kath

Read the following website...

Cumulative Trauma Disorders
http://www.sechrest.com/mmg/pated/ctd.html

Intersection Syndrome
http://www.sechrest.com/mmg/pated/ctd/i ... ml#anatomy

DeQuervain's Tenosynovitis
http://www.sechrest.com/mmg/pated/ctd/dqt/dgt.html

Guyon's Canal Syndrome
http://www.sechrest.com/mmg/pated/ctd/gcs/gcs.html

Thoracic Outlet Syndrome
http://www.sechrest.com/mmg/pated/ctd/t ... troduction

Impingement
http://www.sechrest.com/mmg/pated/shoul ... troduction

Radial Tunnel Syndrome
http://www.sechrest.com/mmg/pated/ctd/r ... adtun.html

Cubital Tunnel Syndrome
http://www.sechrest.com/mmg/pated/ctd/cubtun/cubun.html

Medial Epicondylitis
(Golfer's Elbow)
http://www.sechrest.com/mmg/pated/ctd/mepi/mepi.html

Lateral Epicondylitis
(Tennis elbow)
http://www.sechrest.com/mmg/pated/ctd/lepi/lepi.html

Hi Gwen, I'm left obpi, 54 years old. Was or is there an option for surgury for your son? I found in my baby book a small pamplet on infintile parellisys (sp) so I know my mom did try to find out what was wrong and how she could help. She may very well have done rom exercises on me when I was just a babe but my parents decided they would not say anything to me about my injury and let me do what ever I wanted and whatever I could. Looking back, I am glad they made that decision as I never babied my arm and my parents never made an isue of it now do I remember them telling me to be careful.

A couple dr have told me it was a good thing I did whatever I could otherwise my arm would not have matured as much as it did. Mine is only 2 1/2 inches shorter. (Kath has me beat) And within the last handful of years, I've been told that pain should be expected and is normal and I've been told there should be no pain. I'm grateful for this web site.

I grew up what I always thought was normal. I played on the monkey bars, rode bikesl, roller skated, played ball, played clairnet in the band. Never could do a cartwheel though, and it was not cause I didn't try. (Kath has be beat on that one too, she can do cartwheels)

I've been told this injury is degenerative, but to what extent, no one really knows. I try and use my arm when ever I can Unless I'm in great pain (usually from over use now that I'm a little older. There are times I would like to put my aarm in a sling but I know it would be more comfortable and then I would not use it at all, then atrophy would set in quickly.

Who knows if I would have more or less use of my arm if I would have had rom, etc when I was younger, but that was not an option.
I have found a massage therapist who does sacral craniel therapy. She certainly has helped my headaches,but it's been a slow process of over three years now. I can usually tell when I have a bad headache that "things" have moved around in my head and therefore my arm will also be affected and vice versa.

I wish you the best of luck with your son and remember that any decisions you make about him, will be the right ones for the time. Remember too, it ok and right to change your mind. If one therapy doesn't work switch to another.

I don't know if this has helped you or not, but perhaps it gives you another way of looking at things. Love and Blessings
Sharon (feel free to email me if you want)

Hi Kathleen & Sharon,
Thank you both for your great insights and sharing your experiences.

One of the reasons why I was asking for specific info on future complications is that that the mentioned p/t doesn't understand or comprehend such an event. I really need to educate her without offending at the same time. It may be a fine line.

I understand that scoliosis is another complication that some obpi children might encounter.

Thanks again Sharon, (I will e-mail you), and Kathleen, thanks for all the sites.

sincerely,
Gwen

Hi!

My son has a tbpi and I tried to bring up the issue with his doc and did not get a good response. His response was that since there is no documentation on secondary problems there is no such thing. As we all know this is not true. My PT is great though. She agrees with me that he will have secondary problems. One that she has mentioned that I never thought about is his neck. He favors his left side so he cocks his head to the left. We have been working on this with him to try to keep his neck straight. It is hard for him because it feels like it is crooked when it is really straight. His PT said he could even have vision difficulties if he continues cocking his head this way. He has total avulsion of all nerves so his arm is completely flacid including his shoulder. So maybe your son isn't that bad. I would definately mention this to your PT. Use me as an example. Maybe just say "Another parent has told me about compensation injuries due the BPI. Could this happen? That puts the information on her to help you. Good luck to you.
Renee

Renee
I read what you wrote about your son. I have a left TBPI after an auto accident in February 2000. I went to a chiropracter who figured out that I was holding my head funny because of the bpi as well pinched nerves in my upper neck. I am not sure about other bpi injuries but I have problems with my jaw even. I went to an oral surgeon who told me I have paralysis in my lower jaw joint which is why it feels like my lower left jaw is floating. He said he could not be 100% sure what caused that but he felt it was the bpi. To date I cannot find very much information out about TBPI injuries.
I hope this helps.
Mindy