United Brachial Plexus Network, Inc.

I'm on the hunt for information regarding surgery to hopefully "ease the pain". However, I should probably tell you all a little about myself.

I'm 23 years old and my right arm/shoulder were effected by erb's upon birth. My parents sought to hide me instead of help me. My arm was kept in a sling as a child and thus, cannot bend straight. It can only be lifted so high and cannot go behind me in any way. So putting on a bra the "normal" way is not an option! I have gone the majority of my life feeling extreme pain and tightness in my shoulder. The area between shoulder and neck has always been hard as a rock.

My shoulder itself can actually be brought in front of my ribs, as though the shoulder bone is not attached to anything. I used to gross out the girls with that trick. It is not pain-free to do though.

I gained my first movements after I was a year old. Regardless, my parents did not seek legal or medical help. I'm told they brought me to 1 physical therapist that would move my arm for me - and 1 chyropractor for adults. I'm assuming that alone was not a good move.

Shortly after, they gave up and focused their attention on their new child, my brother. He was born perfect. Resentment and anger issues there? Yes, but not towards him.

When I was 16 I was fed up with the pain and "weakness" of my arm. After having dealt with every non-understand gym teacher out there (my parents refused to send a note), I finally struck out on my own. I began body building. I got to a point where I could (painfully) curl 60 lbs with my right arm and 75 with the left. I assume that too was a move that got me to where I am today, but I became stronger. The pain increased, but I wasn't weak anymore. But my parents still didn't see me as anything but handicapped. I wasnt their perfect child.

I did bodybuilding for a year and after that jumped into kickboxing for 2 years.

It has been a few years since I did much physical activity other than running with my dog.

About 7 months ago I sought physical therapy and a specialist in shoulder injuries - though mostly sports related. He could not give me the answers or insight I needed considering the injury is so old. I forget what tests he ran but the one was to see how much movement I had and the other determined how much nerve damage went through my arm and spine. Needless to say it determined what I already knew. My right side will remain damaged. It will always hurt.

I do have a boyfriend - but he works a lot. Other than him, I am alone in this world. I do not have the money to pay for more physical therapy, nor the money to attempt to buy any beneficial equipment. I do what I can to stretch my shoulder the way the PT guy told me to, but it doesnt do much nowadays.

The other thing he noted was my left shoulder joint (when i was laying down for him to check both shoulders) was very loose. He said the over compensating for the lack of right arm, is forcing my left arm to become bad as well. He could literally wiggle my shoulder all over the place with my body and arm staying where they were. He said I would need to stop using my left arm as often...but how can I? If I am to not have my right arm, and not use my left arm then I am just a torso. I need arms...

It has been a few months since the 3 months of PT. The pain has come back full force and fast. At the moment I would say the pain is a 7 considering this is the end of the day. my right shoulder burns and hurts, my left shoulder hurts almost as badly but isnt tight. Where i can bend my head to rest on my right shoulder, it is very hard to bend it at all towards my left shoulder.

So that is where I am today. I dont have much money to speak of, my health insurance isn't that great and due to my parents never once claiming a legal suite against the medical people, there isnt much of a record of my injury at all. I've contacted all the hospitals and people my parents kept note of, not one of them has any record of me now, 23 years later.

I've got the notes of my father - but that is it.

I have become anibidextrious and ambitious - but I am back to being fed up with it all. I made a life for myself, but I am not as happy as I should be.

So I am looking for some enlightenment. Last I recall it was the 4 and 5th vertebra or something like that, that were most damaged.

Oh and oddly enough I always remember I used to get hyves on my right arm when it was hot out...like I wouldnt sweat but would get very red and blotchy...this still happens of course - but its just something that popped into my head.

Thanks.
Caiti

Welcome to the Boards, I'm glad you found us and have a place were people fully understand your pain and frustrations.

I'm sure your reading many of the old posts and if I can remember where the one is on pain and introductions I will bump it up to the top of the page for you.

It's hard to alone with an injury that no one seems to understand. I found this board when I turned 60 and I so glad you found us while your young enough to benefit from all the support and new medical help.

There is a lot of information to take in from the board and it will be a bit overwhelming at first but it is so healing.
Most of us thought we were the only ones in the world with a rare birth injury. It was shocking when I realized that babies are being injured, like we were, on a daily basis. It's sad but true.

If you have any questions please ask, there are no silly questions when it comes to bpi.

As far as your hives go many of the children have the same thing. My arm is always cold and never seems to warm up. Then if I warm it up it overheats... I just can't win... LOL...

Kath robpi/adult

Welcome to the board Caiti. I am sorry to hear that you are in so much pain! That totally sucks and I understand. I just had surgery this past May to relieve my pain, the burning in my shoulder/back. That pain was horrible! I feel for anyone who has ever experienced that pain. I was able to get a fair amount of relief from kinesio tape wich my OT showed me how to apply and then I could do that at home or school. Thats a relatively cheap option that you could look into for pain relief.
Another thing that might help is moist heat. Microwave a damp towel and lay on it for a while but make sure its not too hot.

Stretches that might help are any passive range of motion you can do just to keep you frim getting more tight. Also a corner stretch is good to keep your pectoralis (chest) muscle loose which in its self relieve some back pain.

If you are willing, send me a picture and maybe I can give you some more ideas from that. What I would look for in the picture is how your shoulders compare (so often we compensate by using upper traps and by relaxing that muscle it can relieve pain) I would also look at you hand, I am an OT student and am very interested in hands. So if you want, send a pic my way and I will offer up any other things that I can think of that might helps and be pretty low cost.

If your insurance covers it chiropractic care is not a bad idea! I just realized how screwed up my spine is due to my injury. I have had 6 chiro treatments and it has made a huge difference! If you have exhausted your PT under insurance try OT.
Swimming is also a great way to loosen up.

I hope you can find some way to relieve your pain!
Hugs,
Amy 20 years old ROBPI from MN
hope16_05@yahoo.com

Caiti
Welcome I hope you can find the answers your looking for here I know I have. To answer your question about surgery there are some different types of surgery to help with pain and tightness my son recently had what is called the mod quad surgery this had to be done due to constant pain in his neck and shoulder caused by muscles contracting. Your 1st step is to find a good BPI doctor to evaluate your injury there are a few in different states I don't know where your from but there is the Mayo Clinic in MN and Dr Nath in Houston that i know see adults. I'm sure others can give more names those are just two I know of but only one my son has seen. You can also search old posts for info on surgeries and surgeons. Also as far as how you put your bra on I have two good hands and can't do it the (normal way) so good luck with that. Hope this has helped some Mare

Caiti,

Welcome to the boards and I am glad you found our network.

Many of us feel your pain. I was injured at birth on my left side. I also had the tightness and burning pain you mentioned. I still do from time to time depending on the over usage of my other arm and the cold weather.

I had the mod quad surgery with Dr. Nath in Houston, TX six years ago. You can find the information about his surgery on his website. You can google his name and it will pop up. Not all people are candidates for surgery and every person is different. However, it would be worth looking into.

When I first heard about it I was ecstatic. It was a long difficult process but I wouldn't of had it any other way.

Although I have had the surgery, I still have some pain issues. However, the shrinking and paralyzing of my arm has stopped. (atrophying they call it).

One thing to remember is with a bp injury we will never be 100%. However, there are things you can do to help alleviate your pain.

Welcome to the boards and keep in touch.

Thank you for the warm welcomes everyone. I am in Milwaukee, Wisconsin. Forgot to setup more info on my profile there.

One of the things I am currently fighting is the emotional portion. I hate that I will never be able to 100% get away from this. My arm will most likely always be bent, my shoulder will never fully function how it should, etc.

At this rate, other than feelings of anger, resentment, etc. I just want the pain to stop. I suppose someday a trip to a therapist might help on the emotional side of things? Maybe there is a BPI group "event" that I can attend before I have a nervous breakdown.

As for my hand, I'm very lucky - I have almost 100% function in my right hand itself. I have limited range in how it turns with the wrist, but it otherwise looks "normal".

X-rays showed my right shoulder to be lower entirely from my left. He did not x-ray my elbow though - I wish he had. His opinion on my arm not bending straight at this point in my life is that the elbow bone was never allowed to form...as the joints form when you move your arm as a child - I was not able to do so. Thus, there is no way to fix the fact that my arm will always be held at an angle. Still to this day people ask me "Why do you hold your arm like that?" And after I state "I was born with Erb's palsy", they tend to just walk away. I've yet to meet a person I could explain it to and actually talk to.

So I'm thankful to have found the board. I will look into the clinic in MN but I'm guessing that too is far off in the future. I'm struggling to pay rent and school loans as it is, I don't think a few trips on a 6+ hour drive would help me financially.

So in that sense I feel doomed right now. An overwhelming sense of being "S.O.L." until I'm much older and the pain has gotten that much worse.

Caiti
I understand just what you are feeling right now and the frustration of not being able to change what is.

But you are young and with time on your side there will be a time when you will be able to change things.
Right now try to do some Range of Motion as best you can. Also don't be afraid to ask for help when you need it. Not asking for help has been my downfall because I damaged my unaffected arm that way.

When people ask me what is wrong with my arm or why I hold it that way, I don't use the words Erb's Palsy.
I tell them I have an brachial plexus injury... it seems that people think Palsy = birth defect. We don't have a birth defect we have a birth injury. If they want more information I tell them the doctor made a major mistake... and pulled me by the head and tore some of my nerves. We also have lots of educational information on this website including a brochure for prevention. Hand a few of these out and people soon stop giving you those looks. Usually they are more interested because they realize it could happen to them or their children. I feel better because I have helped to prevent and injury and also don't have to put up with those dull expressions when I use Erb's Palsy. When I fill out medical information sheets I usually put Obstetrical Brachial Plexus injury. Here I just sign my name with ROBPI since my right arm is injured.

You will have to go through a sort of mourning process with this injury. I think we all mourned our losses at some point in our life. When I was younger the frustration would make me very angry but I always managed to find my way around things. I am so happy for you that you found us. I was 60 when I discovered I was not the only one in the world with this injury. I feel so much better about my injury and have learned so much that now I understand it and don't care if someone else does not...

Keep your chin up and keep posting.

Kath robpi/adult

Welcome Caiti,
I am glad you found us...our UBPN Family. I had a similar emotionally deprived childhood and lack of family support and only found true,deep peace and healing when I found UBPN at age 65..& met people like myself..,then in person at Camp 2005. BUT I also recieved alot of professional Counseling too along the way. Since you are in school?, it could be a good resource for you to get affordable counseling to help you thru your grieving process(it is a process that takes time). Untreated emotional trauma/issues causes/adds to our physical pain too. I was amazed how much pain I had when some of it left after dealing with my life in counseling after I had help for awhile..[each person's time frame is different.[/

Please keep coming here to the Boards. There is no stupid question here and venting is healthy too..and we do understand.

HUGS,
Carolyn J
LOBPI/69


Message was edited by: Carolyn J

I graduated this past March actually.

I have my Associates Degree in Computer Aided Drafting and Design.

I am the only CAD Drafter for a small residential remodeling firm where I lead a very nice quiet life. The pay is horrible, but I've lived in corporate hell before (so to speak)...and it was not nice. They did not even want to assist me in any way when the desk they first gave me almost made me unable to type. I had to go get my doctor to physically contact the location, plus write a note. They were not willing to believe I wasnt "faking it" and just "holding my arm that way"...

So I have vowed a life of poverty for some slight happiness. I dont go out, I dont have friends - but I have a career, a boyfriend that loves me, and a wonderful little collie pup that makes my days bright.

I know I need some counseling help - but where one would help in reference to BPI in my area? No clue. I wouldnt like going to a counseler that didnt even know what BPI was.

My own primary physician had to look up BPI in a book as I sat before him. I almost cried because I just cant seem to find people that even know about bpi that are within my reach. he sent me to a hand surgeon who fortunately sent me to a shoulder expert. Both of them however were mainly through sports injuries and were not all that familiar with bpi or what exactly was "wrong with me".

So I have awful luck and it does get frustrating, but I have surpassed many odds. I keep that in mind - but it doesnt help when you cant talk to anyone about it. I'm quiet and reserved, I can be outgoing but I prefer to stay home and read a book. I kind of missed that "drinking stage" with partying and friends. I did have friends in high school, dont get me wrong. But they have since done nothing with their lives. I, the handicapped one, have done a million more things than they would ever do now - and that alone was depressing. To get mocked for finding a career you love? I'd rather be mocked for my arm! So my friendships ended and I've never sought to make new ones.

No family, no friends - And I guess I never got emotional enough to seek a message board until now. I'm getting worn down and tired with it all. I've felt this way a few times in my life and resorted to the extremes of kickboxing and bodybuilding...but I just cant put myself through that much pain again. I was so determined to get rid of the weakness that I was able to work through everything else. In the long wrong that was probably the worst 2 years of my life.

Well, I'll keep posting and reading the info here. And hope that someday my luck changes.

Dear Caiti,

A Counselor who is a Licensed Mental Health Counselor(make sure they have LMHC after their name), does not need to know detail/Specifics of our BPI Injuries. It is documented that BPI-ers(my term)often have Secondary Injuries Emotional issues are one of them. You print out these articles from our web site under "Resources" and other articles simply explaining what Brachial Plexus Injuries are , and give him/her our web site address, give copies to him/her. Everyone of us adults educate every Medical Professional we come in contact with(on 2nd thought, new parents do too...). If you want help to relieve the pain of Emotional injuries/issues you'll do it.

I'l get of my soap box now...
HUGS all,
Carolyn J
lobpi/69
PS..I love my UBPN Family,you all understand my rants...!


Message was edited by: Carolyn J