Wondering...

[espiper]

espiper here (suzy). I had never met anyone with this injury, and still haven't face to face, except my oldest sister who is robpi (yes, same stupid doctor). I always thought I was severe until coming to the boards and meeting Dr. Nath. Now I think I am mild or medium. I was injured only at the C5 (my sister at the C7) so it was my deltoid that was affected. My arm is straight and have no hand problems other than can't completely supinate. But it was severe in that I didn't use it at all, ignored it in fact in childhood so was really locked down by the other muscles - could only lift 22* to the side and 45* out front. After Mod Quad I am at 92* to the side and 114* out front which has completely changed my life. I am expecting to get ever higher - I have two problems now, weakness and when I lift the opposing muscles kick in so I am working on stregnth and most importantly - learning new muscle patterns so the opposing ones don't trigger on when I lift. Both can be over come with a lot of work.
I really started using my affected arm around 10 years old when I got put in a brace for scoliosis - had to exercise twice a day for 10 years when I finally got out of it. I learned to swim at 4 years old - don't ask me how. I also had to swim as part of the routine and rode horses competitively from 6 yrs old to 14 years old.
After the 10 years I naturally have kept up with exercise at gyms and swimming because I really didn't know anything different since age 10. I was also more comfortable carrying heavy loads in my affected arm before Mod Quad- made me feel balanced cause the affected side always felt so light. After Mod Quad my affected side suddenly felt very heavy since it was all released now so carry heavy stuff on both sides now. I always carried my kids on my affected side though so if anything, perhaps I had fairly even use except for reaching up high and then I would drag the object to the edge of the high shelf and then let if fall into my affected hand. So, actually, my unaffected arm had it pretty easy maybe - it is such a show off anyways!!
Ironically, I did develope neck pain following Mod Quad that lasted a good 5 months. My therapist figured out imediately it was because now that the shoulder was released it was sitting at a lower, normal placement but my neck muscles - mostly upper traps - were too freakin' short to deal with this. So over the 5 months we legnthened the traps and other neck and upper back muscles to accomodate the new position and now although I still do the stretches daily, I am pain free and look quite normal. My shoulders are even, still one is a bit smaller but even less noticable now. The pain really freaked me out but the reasoning made sense and I knew "this too shall pass".
I have just started swimming again a month ago and can finally do the backstroke without getting a face full of water! My anterior deltoid is super tiny so I do the breast stroke, crawl, and backstroke to beef up the sucker along with working with therabands and movements to retrain my muscle patterns - huge issue for me.
I am very thankful that I had scoliosis and spent 10 years in the brace with a crazy exercise routine, my parents put me into ballet class at 4 years, and that my parents threw me in a pool at 4 years old (actually my dad said he had to teach me to swim at 4 because he was sick of jumping in to pools after me at parties, fancy dinners, ect. - I don't know what he is talking about!) and they were insane enough to put me on a horse at 6 years old! I encourage all parents to be brave, hold your breath, look away, or whatever you need to do to get that kid to use that arm!

[Kath]

Lisa
I can honestly answer YES to all of your questions.
I was fearless as a child and just really overused and I guess abused my good arm and MY hands.
I have severe joint deformity now from using my hands to do things when my shoulders gave out.

I come from a pretty sturdy family and even at 80 my brothers back shoulder and arms are in better condition than mine...
It is definitely overuse.
But I don't know what can prevent these issues...
If we fail to live our life fully we would be miserable.

I am one of those people with spinal issues now from compensation.
Spinal stenosis as well as sciatica in both legs.
It is from torquing my body to preform daily functions like laundry,empty the dishwasher carrying the children and groceries.
All of these tasks are hard on the arms, hands and shoulders of a normal person never mind and OBPI.
Pregnancy seems to take it's toll on the average woman and with compensation issues who knows.
I would still have 3 kids even knowing what I know now so what could I have changed?
I really never thought of myself as being disabled nor did anyone one else.
I have all my nerves involved and Horner's and still forget I can't use both hands.
I ordered an exercise tool that requires two hands I forgot I can't touch my face...LOL...
I sat and laughed at how dumb I was not to think of that before I ordered it.

Kath

[admin]

I just wanted to let you all know that a post like this really helps moms on the other side. I, for one, wish I could jump into your bodies so I could know what my daughter feels in hers, but your words are so full that in essence I've done that by reading.
Thank you for sharing so honestly and completely.

[meg501]

Because this is my first time here, I am wondering what does LO and RT mean. I am sure that it has something to do with left and right, but what else...

I too face pain and it hasn't been there all my life, not that I remember anyway. My right arm, the affected arm, has sharp pains that start in my scapula and radiate down to my hand. It usually does not last longer than a minute, thank goodness. I also can't figure out why it occurs.

Over compensation seems to be a theme. The lower back pain is a constant and I don't think that I would give up my life to stop it either.

I am really excited about this forum. I needed some one that understood to talk to about this injury. I don't think of my self as being disabled and I really have a hard time when people assume that I am disabled.

I played softball, yes one hand, I play the piano, and I am even studying to be nurse. I have always done what I wanted. As many of you know it helps if you learn and teach yourself to do things. Parents are a wonderful support for children when they encourage activities that make them use the affected arm.

[Kath]

Welcome Meg501

I am glad you posted. It is very important to share with people who understand.

I am glad you found us and have a place to come for information and to give and receive support.

R= right O= Obstetrical B=Brachial P=Plexus I=injury

Kath (adult/ROBPI)

[Kath]

Lori
I am glad you find answers you need. You really are an unusual case being injured at 5 of course almost puts you in a strange place.

At Camp this year there was a girl from Alaska she was only 13 and boy I wish you were there to talk to her. She is a sweet girl but I guess also in an odd place. Mostly we see adult/TBPI and OBPI are children who like you grow up injured.

I think you are suffering from overuse and boy is it tough on us ... and secondary issues that affect us after a lifetime of compensation.

Kath

[Beckyerin]

Dear Lisa (Tanners Mom),
I had no pain until about 22-23 and so consequently never went to see a BPI specialist doc after childhood.I had no idea I was ever going to experience pain. I am ROBPI. At that time went to an orthopedic doc who said due to weak shoulder muscles(rotator cuff) my neck muscle were overworked. Went to PT for the neck, pain subsided. Now at 25 I was freaking out because pain came back but significantly worse. I went to a BPI specialist who told me it is very common for us with this injury to have muscle contracture's which causes pain. So now currently I am back in PT and its helping a lot. Doc says I'll be in and out of PT from now on.
Personally I wish that I had done more physical therapy after childhood and on into my teens to keep the muscles in my affected arm from becoming tight.I realize now the importance of stretching and so I do this every day. I also now do weight lifting to keep the strength I have in my affected arm as well. I wish I had been doing this all my life although as a kid and a teenager I may not have kept up with it. Hope this helps.
Becky

[Steve L.]

I find it truly amazing how one small statement can spark such wonderful responses. That's why I so seldom post, all you have to do is keep reading any post that relates to you and you will find questions, answers, reasons, solutions and situations. Sometimes to things you'd never thought of yet.
You people ROCK!

[meg501]

Thanks for responding so quickly. Therefore, I am a 22 ROBPI.

Has anyone had surgeries in the past. Or does anyone know of any new treatments other than Physical Therapy?

[Kath]

Steve
So your a LURKER now! Hey we need people to start a conversation and it will just keep moving.
Your daughter posted and it was a great post any father would be proud of...
I hate it when this board gets quiet, I feel I am alone again.

We have a few LURKERS here, one of the men at Camp said he was going to post... I'm still waiting!

Kath