Needed suggestions

[Heather21]

Hi I'm new to this message board thing but I think I have this injury in my right arm. My mom always has called it erb palsy and I've had it since birth. I can't straighten my right arm all the way...I can straighten it about 90% of the way. I can still do some things with my right arm and hand and I feel I have pretty good motion with it...most people don't even notice anything is wrong. When I put it down to my side it just looks like my arm is just bent slightly. The thing that bothers me the most is my shoulder...it is much smaller than my left and I notice it and it bothers me more than having my arm not be able to straighten. Once again most people don't notice it...or they are just not telling me then can. Any shirt I wear I look in the mirror and it looks almost like I am wearing a small shoulder pad (the ones that people used to wear on there shoulders under their shirts) on the left shoulder and missing one on the right. I don't like wearing short sleeved shirts because of my shoulder being smaller and also because my biceps muscle on my right arm is a little bigger than on my left arm...in the past people have made comments on my biceps. When I was in high school I was on dance company and couldn't do certain moves with my arm..and that's when most people noticed my arm, shoulder, and biceps...obviously my arm isn't too bad because trying out for dance company the judges didn't notice anything and I made the team. I feel like I am just rambling on and on but I haven't ever talked to anyone about my arm..not my mom, husband, or friends. I just was wondering if there is anyone out there with these same problems and if someone can recommend what I should do...I would like to get it fixed especially my shoulder being smaller...I don't know if it would be a cosmetic doctor or orthopedic doctor to fix my shoulder. Anyone that could help would be greatly appreciated...THANKS!!

[Kath]

Heather
Welcome to the Message Boards. When I was a child the only term they used was Erb's Palsy. I'm glad you found us. I went shopping this week for some summer shirts and was so annoyed by the time I came home. Most shirts are short sleeved and then I have some sensory issues so I can't stand the feel of certain materials. So that crossed out most of the shirts in the store.
When I wear long sleeves I put one small thin shoulder pad on my right side.

Please keep reading old posts and feel free to ask any question that pops into your head. There are no silly questions when it comes to bpi.

Kath robpi/adult


Message was edited by: Kath

[Luc]

Hi Heather, welcome!
Your injury sounds like erb's palsy to me. I think it was Kath that said in an old post she did not even call our injury 'erbs palsy'. She said it sounds like a salad! LOL And thats true 'erb's palsy' sounds bad, I like BPI (Bracial Plexus Injury) much more. When I was diagonosed in November of '05, the doc was checking out a work related injury for my employer.... he stopped half way thru and said quizzingly," Do you know you have erb's palsy?" So doctors still refer to the injury as such .
Also, your right arm and shoulder sounds like they look exactly like my left arm and shoulder. That same doc I wrote about above also said I was born with a double jointed trait, which has given me a bit more range of motion then some of the other folks on here. you might have that double jointed trait too, because when I to Chicago to see the famous Dr. Nath there were other people there with erb's and they could not straighten out there arm probably even 30%, it was really bad. I think we are lucky.
I have a quick question..... since your mother has known since birth that you have been with erb's, did she sue the doctor who delievered you? It was probably caused by negligence. I am not all for our sue happy culture, but dang, I do feel vengful towards the doctor who delievered me. ( Would sue him but he has died.)

Luke , LOBPI, 26

[Luc]

Oh, and if I could give one tip to "straighten yourself out," I would recommend swimming. It works the muscles in a fuller range of motion than any other exercise I have tried. Some other people on here could tell you about surgery, but if your injury looks like mine, and from what you have written it does, surgery would probably be to invasive. Dr. Nath, who you will read more about on here, basically told me as much and said you have it but not extremely bad, just live with it. That was not what i wanted to hear. We will never look 'normal' without surgery, but swimming has helped even me out as close as probably is possible.

Luke, LOBPI, 26

[Carolyn J]

WELCOME, Heather! to our UBPN Family. I call it that because we are all in this together, everyone connected to, or cares about, a person with a BPI Injury.

There are no dumb questions on any of the Forum Message Boards and everyone is welcome on all Formum Boards.

I hope you come here often.

Carolyn J
LOBPI/69

[Heather21]

Hey Luke...Thanks so much for the tips and info I really appreciate it!! I have to say when I swim it does seem to help but honestly I have no idea what I am supposed to be helping...the muscles or nerves or what ya know?? My arm is practically normal...I have full function of my hand and wrist and really I didn't know that the injury got worst than mine is until just recently when I started digging deeper into the subject. But yes I agree I would defiantly call us lucky...my injury is minimal compared to some of these pictures I have seen online...but mine would have been just as bad had I not done a surgery when I was a baby. I admire some of these people on here so much because of their positive outlook on all this. I look at myself after seeing all this online for the first time and ask myself why am I complaining?? But I still have the urge to have a normal arm. My mom tried to sue the doctor but it was declined. She actually had the birth taped..it's all "g" rated but in the video you can actually see and hear the doctor talking about how he needs to hurry to get to some family event he has going on. He should have delivered my c-section because I weighed like 9 lbs. but he was too much in a rush. It makes me so irritated to think about it because he was suppost to be responsible and take care of this new life...it's his job and he didn't do it. I have talked to my mom about trying to sue again and I think I am going to pursue it and just see where I get.
Like everyone says this injury it preventable but yet it happens to so many...it's popping up everywhere and the doctors don't have consequences. It's really sad. But anyways...so that really shocks me that you didn't know you had it. How did your injury happen? I mean my injury is really minimal and nobody even notices it but I still do...that's why I'm so surprised. Well alright I'm just going on and on...thanks again for the post!!

[Heather21]

Thank you Carolyn for the support and comfort. It's so great that there are so many nice people on these boards. No one is complaining..everyone is just telling their story and supporting others.

I will defiantly be checking back on here often!!

[Luc]

I guess I could give you one more tip; I recommend you to move to Madison County Illinois, where I live currently. It is listed as the 'most illitigous area in the US" according to wikipedia. If you sued that doc here, his lawyers would pee their pants at the thought of your case actually going to trial, and they would settle out of court very quickly! ( I have heard similiar stories...) We kind of have it out for 'the man' in Madison county. I as a fellow erb's person, I know you are deserving of Some kind of validation.
The lawsuit was declined? Does that mean the judge threw the suit out? It is obvious I would think; doctor in hurry, doctor botched delievery, baby with life long consequence. I would defiently try to sue again if I was you! You have a case... don't people today sue for someone popping gum and claiming 'mental anguish'? I have heard of cases like that. You have a much better case than that.
My story is the same. The doctor, who actually is a friend of my mom, was in a hurry. The imbilical cord was wrapped around my neck, and my dad told me I was turning a shade of blue. I suppose the doc just yankked me out. Everything on my left side is shorter and for some reason feels different, exactly like Kath described her problem feeling clothes on her erb's side.


Message was edited by: Luc

[Heather21]

LOL thanks but I don't think a move across the country is in the cards for me right now...wish it was so I could make this doctor pay! We will have to see how far I get in Utah. Hopefully I can do something...I want a law passed or something that makes them have to report these injuries. It really confuses me why they don't have to and I had no idea that was the situation until literally just yesterday. Even if I could just get some answers just to that question from some professional lawyer.

The lawsuit was declined..that's the terms my mom used and she's not always word correct so I'm not sure if it was thrown out of court or what. But I am going to try to sue again I just don't know where to ever begin.

I'm sorry your going through this also. I really feel for every person on here. My right side is proportioned the same as my left and I don't have any sensitivity to anything on my bad arm. I'm tellin ya my arm is totally mild compared to others and that makes me feel so bad I was just cryin my eyes out last night reading somethings and looking at pictures about this injury. But everyone just keeps smiling so I know that they are somewhat ok.

Thanks for the support...
Heather-robmi-21


Message was edited by: Heather21

[richinma2005]

I know of one successful push to get the injury recorded. It was in the state of Iowa. Kathleen Kennedy

Kathleen@ubpn.org or katkenia@aol.com



http://www.legis.state.ia.us/GA/79GA/Le ... rrent.html

http://www2.legis.state.ia.us/GA/79GA/L ... rrent.html

http://www.legis.state.ia.us/GA/78GA/Le ... rrent.html
Senate File 251, by Rehberg, a bill for an act providing for the
placement of children born with brachial plexus palsy on the birth
defects institute central registry.

Read first time and referred to committee on Human Resources.

Senate File 252, by Rehberg and Schuerer, a bill for an act
providing for the establishment of an obstetrical brachial plexus
palsy referral program at the university of Iowa hospitals and clinics.

The first step is to get one of your state reps to listen to your cause, and back it. They are the ones who have to introduce the bill. I believe the woman who started it in Iowa was Kathleen Kennedy.

From online:
Kennedy's efforts have not stopped there. As the lead contact for the Iowa Brachial Plexus/Erb's Palsy Informational Network, she has been working at both the state and federal government levels to increase awareness about the injury. In Iowa, Kennedy has been actively working with State Senator Kitty Rehberg and two bills are on the table for consideration as a result of their efforts. Bill 251 proposes a birth registry to document cases of obstetric brachial plexus palsy in Iowa. Bill 252 would establish an obstetrical brachial plexus palsy referral program at the University of Iowa hospitals and clinics to provide information about other facilities around the country that specialize in this area. Kennedy is also involved in a mass mailing project to family practitioners and pediatricians in the state of Iowa.