United Brachial Plexus Network, Inc.

I think its time to move this up again for some of the new gang.

Kath

Kath:

Thanks for bringing this up since I am one of the new gang members. I am going to put my 2 cents in too!! Oh, I am 31 ROBPI.

How many have always had pain?

I always had pain. Seems as I get older it's getting worse. My shoulder feels like someone is sitting on it. Fingers don't want to cooperate. While my skin is numb, I can feel underneath, which feels like hot little needles pricking me. I know that is weird. I have tried to ignore a lot of it.

Did you ever tell your parents/family you were in pain or did you just accept it as your normal?

I told my mom that I hurt. I just really thought eventually this is the way it was suppose to be. One of my sisters thought I just wanted attention cause I was the baby of the family. Go figure. She was just jealous.

Did any of you have the shock type pains when you were small?

yes

Did it occur during growth periods or just out of no where?

out of no where

Does the weather bother bother you?

Yes!!! Did when I was little & does now!

Do you have to take medication for pain and have you always had to take something?

They put me on some type of medicine but I couldn't take it cause it upset my stomach.

At what age to you think the pain begins to be more noticeable?

That is a hard one..for me I would have to say around 29

How many of you were unaware that arm, neck and back problems were related to your arm and compensation?

I sorta put 2 and 2 together, but no one ever said anything.

Did any of you realize that compensation and bpi may have caused other healh problems?

no

How many thought is was only an arm and it did not affect the rest of your body?

I did

Did you think the unaffected arm was so physically strong nothing could change it?

yes

How many have had really good follow up care from physicians...sending you to PT and/or check to see your arms are moving keeping track of your ROM?

I had a bone doc I went to when I was young that ran a lot of test on me, but only told my mom to give me ROM. He never sent me for PT. I have since went to other doctors that didn't specialize in OBPI & the just don't have a clue. I have since found one in my area & have an appointment at the end of June!!! YEAH!!

If your answer to good follow up care is no

Can you state how the lack of interest in you arm impacted your physical health?

My parents/friends made all the difference in the world. I am a go getter anyway! I just wish there could of been more things the doc would of suggested.

Did you ever realize that no one spoke about your arm during physical exams?

They would ask what happened. I'd tell them. Then they wouldn't say anything or ask anymore questions. The main reason they would notice is when they go to shake my left hand would raise my right hand to shake.

Did you ever receive any instructions on how to care for yourself and prevent injury?

never

Do you have poor circulation, lack feeling on some parts of your arm, face, hand, ear and neck?

yes...arm, neck, hand

Is your arm colder when you sleep?

yes

Do you wake up cause your arm is cold?

no

Do you often find your arm and is freezing even when using it?

yes..a lot

Thanks again Kath!!!!!


Deanna

I am the mother of a 20-month old daughter who was born with Erb's Palsy. She was an exceptionally fussy baby, often screaming for no apparent reason. During the first twelve months of her life, I was often unable to console her. Her doctors assured me that her BPI wouldn't be causing her any pain, but I had nagging doubts. She has made great physical progress, but she now sometimes says "Ah-Oh, Arm!" or "Bonk Arm! Arm hurts!" Could she be in pain? What can be done to help babies or toddlers, who are unable to say what they are feeling?

Moving this up again

Kath

How many have always had pain? I’ve always had pain. It was more widespread in my youth, but now I just get pains in my left side of chest, neck, shoulder, arm and hand.

Did you ever tell your parents/family you were in pain or did you just accept it as your normal? I told them about my pains especially my mother.

When you complained as a child were you told this injury is not painful? Yes! They told me it can’t hurt because the nerves are dead. When they finally accepted that I was in pain they took me to a doctor but no practical treatment could be offered, and pain killers were discouraged because the situation most likely would not improve.

Did any of you have the shock type pains when you were small? The pain seems to swell up and it’s like a stinging throb. Then it subsides for a few minutes before if swells up again.

Did it occur during growth periods or just out of no where? Probably both.

Does the weather bother you? Yes. It cause the chest to hurt more intensely.

Do you have to take medication for pain and have you always had to take something? No, but that’s a judgment call that each of us makes individually. I don’t want to take any medications so I don’t even though it hurts.

At what age do you think pain begins to be more noticeable? The BPP injury has always hurt.

How many of you were unaware that arm, neck and back problems were related to your arm and compensation? I didn’t realize until fairly recently that these pains are unique to this kind of injury.

Did any of you realize that compensation and bpi may have caused other health problems? No. What other problems? cdiamondstein@yahoo.com

How many thought it was only an arm and it did not affect the rest of your body. I thought that when I was a youth.

Did you think that the unaffected arm was so physically strong nothing could change it? No, but others around me had told me that they thought so. I knew my right arm was not especially strong because I couldn’t do chin-ups or push-ups as a child.

How many have had really good follow up care from physicians ... sending you to PT and/or checking to see your arms are moving keeping track of your ROM? Fair amount of follow up care.

If your answer to good follow up care is no

Can you state how the lack of interest in your arm impacted your physical health?

Did you ever realize that no one spoke about your arm during physical exams? They did.

Did you ever receive any instructions on how to care for yourself and prevent injury? Some.

Do you:
have poor circulation No.
lack feeling on some parts of your arm Yes.
lack feeling on some parts of your face No.
lack feeling on some parts of your hand No.
ear and neck No.

Is your arm colder when you sleep? It’s always colder than my right arm.

Do you wake up because your arm is cold? No. I wake up from the pains in the neck, chest, shoulder, arm, and hand.

Do you often find your arm hand is freezing even when using it? Yes.

Welcome to the Message boards Cliff
thanks for answering all these questions. I think it helps new people to read and learn that they are not alone and that we all have similar experiences...

These questions come from conversations over a two year period by many adult obpi who posted to these message boards... we would post and it seemed as if the same questions came up over and over... so I thought I would put them in one spot for everyone to answer and compare notes...

At the present time there are no long terms studies on the lifetime effects of compensation and obpi so I thought this might help all of us and I see it has helped some to read this post.

I put an extra sleeve on my right arm when I sleep when I was a kid I put the covers over my head to warm my face and ear... I had Horner's with this injury.

OBPI... has a total impact on the body... from head to toe for most of us... In my case when my daughter tried on my wedding gown... we were amazed at the difference in the size of the entire right side... it was not visable to the naked eye but she was squeezed on the right side...

Well, here goes my answers. I think this is a great idea Kath. Hopefully a lot of people will answer these. It's great to have input from people!!

How many have always had pain?
I've always had pain, mostly in my shoulder area under my scapula.

Did you ever tell your parents/family you were in pain or did you just accept it as your normal?
I always accepted it as being normal. I just dealt with the pain.

When you complained as a child were you told this injury is not painful?

I never really complained as a child, not until I started to play sports. I was told that yes I could do it so I just kept hurting and trying to the best of my ability.

Did any of you have the shock type pains when you were small?
I mostly remember them when I became more active. It felt like pins and needles in my shoulder and arm.

Did it occur during growth periods or just out of no where?
I always thought it was from over use of it. Again, when I was more active.

Does the weather bother you?
Not that I can tell, No.

Do you have to take medication for pain and have you always had to take something
I have never taken any kind of pain medications for this.

At what age do you think pain begins to be more noticeable?

The age of 12. More into sports and other activities. Now I am 31 and the pain some days is unbearable. The older you get I think the worse it is.

How many of you were unaware that arm, neck and back problems were related to your arm and compensation?

I was unaware my whole life. I have always over compensated for my other arm.

Did any of you realize that compensation and bpi may have caused other health problems

I was never told that no.

How many thought it was only an arm and it did not affect the rest of your body.

I have thought that my whole life!!!

Did you think that the unaffected arm was so physically strong nothing could change it ?
Yes
How many have had really good follow up care from physicians ... sending you to PT and/or checking to see your arms are moving keeping track of your ROM?

NO (I had to push for my Dr. to even send me to therapy)

Can you state how the lack of interest in your arm impacted your physical health?

It is very depressing at times.

Did you ever realize that no one spoke about your arm during physical exams?
At sports physicals the Dr. would just say what happened to your arm did you break it? I said no it was a birth injury and that was that. Nothing else was said.

Did you ever receive any instructions on how to care for yourself and prevent injury?
NO!!

Do you have poor circulation,lack feeling on some parts of your arm,face, hand, ear and neck

Lack of circulation in my affected arm. It will swell up and turn purple quite a bit. Also numbness, and tingling feeling on the affected side in my face.


Is your arm colder when you sleep?
No
Do you wake up because your arm is cold?
No

Do you often find your arm hand is freezing even when using it?
No

Hope this helped you out!! Let me know if I can be of help to you.
Thanks
Rachel

Will try and answer.I had to copy questions by hand so I can't retype.Hand is cramping will no.These are great questions!Wish my dr. had asked some of them.Really have no idea how to answer in a column.New to site and computer.Here goes.1-Don't remember always having pain.2-If I was in pain I figured it was normal.3-Didn't complain.4-no shock pain when young.5-don't remember any shock pain.6-weather absoloutely bothers me!7-I take darvocet,valium for spasms and elavil also for pain.8-noticed shock and pain in my 20s.9Did not know other problems were related.10-It wasn't until I was complaining about my good arm to dr.thatIt was because of bp.He also to;ld me I had scoliosis.I'm 50 and it was only 7 yrs ago I was informed how messed up I am.11-Foll-up care stopped around 13.I had one last surgery when I was 18.Tried to fuse left shoulder.didn't work.No follow-up after cast was removed.12-Any physical I had my bp never came.They also didn't catch scoliosis.13-same as above.14-No info on preventing injuries.Drs.told my parents to let me try whatever I want and not to dwell on bp.That's why i'm so strong willed.I still try but it's getting harder.15-Parts of both arms,fingers hand and neck have no feeling or always have pins and needles.16-The last three questions are all no.Hope you can read this and it helps.

Hi There
This is the first posting for me soo please be kind and here goes...
I am 34 and have had my injury since birth and in reading the different messages on here I just want to say THANK YOU GOD!!!
I can't believe that there are soo many people like me out there it really is unbelievable. I was sitting here reading these questions relating to pain and the answers given and all I keep thinking is I'm not alone anymore. I have lived with this and been alone for soo long that I was just used to everyone ignoring my arm and I didn't think much (if at all) about the indifference and now other than all the tears that are currently running down my face I am a bit angry. No one has ever talked to me about my injury being actually no one has ever talked to mee!!?? I have had the electrical shocks and pain and swelling in my injured arm and have gone to my MD and have had referrals to ortho docs as an adult but he hadn't ever heard of this kind of injury. That is basically what I have always run into soo now in seeing this site I am completely flabbergasted to know there is a community out there with answers and the understanding that I need to help me feel a little less freakish in this harsh world. Don't get me wrong I blame myself as well because for me this "difference" I have has not been easy emotionally for me and only recently have I discovered how deeply and strongly my dislike for a part of my own body actually is. I have obviously been living in the land of denial but now that I have found all of you I am more hopeful than I would have ever thought. I'm sorry I have taken up so much room with this but I am really happy and relieved. Please please please anyone e-mail me because I have soo much to ask, to learn and I just don't know where to begin. Thanks again for listening!!!

Andrea

It does not matter how you answered them just that you shared information. Having this post seems to have helped lots of us understand that we share similar experience with this injury.


Cynthia
Welcome to the Boards... It must be a shock for you to find out we are all here but I am glad you found us please ask away... no question is silly as you can see if you read many of the posts. Adults with this injury have so many questions that no one asked and also not many people understand the total impact of this injury because we seem to function so well in society... I found out so much from asking questions on the board and others answering... we all have a lot in common that we thought were little quirks...
Kath