United Brachial Plexus Network, Inc.

How many have always had pain? As a child I would get "spasms" but other than that I really don't remember any pain.

Did you ever tell your parents/family you were in pain or did you just accept it as your normal? Just took the spasms as normal.

When you complained as a child were you told this injury is not painful? My doctors still tell me that.

Did any of you have the shock type pains when you were small? If you are talking about the spasms then yes.

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

Does the weather bother you? Really never paid attention.

Do you have to take medication for pain and have you always had to take something? No meds for it.

At what age do you think pain begins to be more noticeable? I've been noticing it more in the last 5 years or so (so about 25)

How many of you were unaware that arm, neck and back problems were related to your arm and compensation? Not me.

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

How many thought it was only an arm and it did not affect the rest of your body. I did until I started noticing other things.

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

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? Not me.

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? Right now it's causing major problems with my back and unoffected arm. I'm also wondering if a lot of my migrains are connected. But since no one was willing to work with me I've just lived with it till it's to the point where I don't even know if help would work.

Did you ever realize that no one spoke about your arm during physical exams? I was the only one who ever mentioned it.

Did you ever receive any instructions on how to care for yourself and prevent injury? When I was a child they just told me not to do anything like gymnastics.

Do you have poor circulation,lack feeling on some parts of your arm,face, hand, ear and neck. No. Actually I have hypersensitivity.

Is your arm colder when you sleep? Never noticed.
Do you wake up because your arm is cold? Never noticed.
Do you often find your arm hand is freezing even when using it? No.

to the top

How many have always had pain?
I've always had some kind of pain with my wrist, arm, shoulder or neck.

Did you ever tell your parents/family you were in pain or did you just accept it as your normal?
When I was younger, I just felt it was normal. After I became an adult & parent, we all realized that I had more limitations than we originally thought.

When you complained as a child were you told this injury is not painful?
I really didn't complain much when I was younger.

Did any of you have the shock type pains when you were small?
Sometimes I had "shooting pains" from my fingers to my elbow.

Did it occur during growth periods or just out of no where?
I noticed it more during growth spurts.

Does the weather bother you?
Absolutely! I think my right wrist can forecast the weather than any meteorologist!

Do you have to take medication for pain and have you always had to take something?
Very seldom do I take medication for my "OBPI" pain. I have, however, taken Vicadin for lower back pain. I try not to take it unless it's absolutely necessary.

At what age do you think pain begins to be more noticeable?
Early 20's & as I was caring for my children.

How many of you were unaware that arm, neck and back problems were related to your arm and compensation?
Not until I was in my 40's did I realize that these problems were associated with my OBPI.

Did any of you realize that compensation and bpi may have caused other health problems?
Not until recently. (I am 50)

How many thought it was only an arm and it did not affect the rest of your body.
I definitely thought it was a whole separate entity in itself; kinda like a foreign object!

Did you think that the unaffected arm was so physically strong nothing could change it ?
Yes! Boy, was I wrong!

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?
None at all. The problem was mostly ignored by the doctors who were aware of it.

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?
When I was younger, it didn't really matter. As I got older, I slowly began to realize I had many limitations.

Did you ever realize that no one spoke about your arm during physical exams?
I guess I pretty much ignored the problem, too. I was really embarrassed about it. I felt like a freak!

Did you ever receive any instructions on how to care for yourself and prevent injury?
No. My parents just told me to be careful.

Do you have poor circulation,lack feeling on some parts of your arm,face, hand, ear and neck
Poor circulation in my entire arm.

Is your arm colder when you sleep?
Yes.

Do you wake up because your arm is cold?
No.

Do you often find your arm hand is freezing even when using it?
Oh yes. Especially in the winter (I live in Wisconsin).



Thanks for answering many of these question many come from the past three years of posts and e-mails.

Kath - Thank your for the opportunity!
Cyndi

Kath

Moving this up for Tracy
Kath

I found it Kath. Thanks.

How many have always had pain?
I have always had just accepted it as normal.

Did you ever tell your parents/family you were in pain or did you just accept as your normal?
yes. I told them and we all accepted it as normal(I can remember my pediatric doctor telling us if I complained about "it was just the erb's palsy--that's normal"!!!

When you complained as a child were you told this injury is not painful?
yes. by my doctors--they would say it was a strain and that it should go away.
Did any of you have the shock type pains when you were small? yes. doctors would say that they were just growing pains. I still have these and not growing anymore(32 yrs. old)

Did it occur with growth periods or just out of no where? Have had them as far back as I can remember to this day.

Does the weather bother you?
Yes. If it is cold my affected arm goes numb--turns red, bluish purple color(in splotches) very painful When I try to warm it up(or thawing out as I call it).I've also noticed in hot weather
affected arm gets clammy with redish pink splotches.

Do you have to take medication for pain and have you always had to take something?
I don't remember taking any meds. until Nov. 04(have tried flexeril-40mg/day(can't take long term--bad side effects to the liver,naproxen-1000mg/day(side effects--heart failure),skelaxin-2400mg/day,sulindac-400mg/day
verapamil-180mg/day(I had very bad allergic reactions to these three) and the latest is gabapentin-1800mg/day which I feel is making my unaffected arm weaker than it has ever been,making me gain weight, and has still not stopped the shooting pain up right leg, fatigued.trying to get neuro. to take me off meds.

At what age do you think pain begins to be more noticable?
I really don't think there is an age that you notice the pain, I think it is how physically active you are(body movement compensation I guess is what I'm trying to say.)

How many of you are unaware that arm, neck, and back problems were related to your arm and compensation?
I wasn't aware until recently!!!!Now if I can convince my neuro. of this!!!!!

Did any of you realize that compensation and bpi may have caused other health problems? I do now!!! I have had doctors tell me that it is old injury and has nothing to do with my existing condition but I will probably have chronic pain the rest of my life..case solved right!!!!ha ha

How many of you thought it was only an arm and it did not affect the rest of your body?
That is what I used to think. not anymore!!!!!!!

Did you think that the unaffected arm was so physically strong nothing could change it?
YES!!! but my unaffected arm is getting weaker and weaker. This is very scary to me. After all this is my good arm. If function is lost in it then what?????

How many have had really good follow up care from phycians...sending you to PT and/or checking to see your arms moving keeping track of your ROM?not had good follow-up. Only the first two years of my life was I in PT. After that the doctors told my mom that's all they could do for me.(she would not agree to experimental tests-said I had been through enough)Did not start doing ROM again until 2002 after getting all knotted up in neck area--chiro suggested

If your answer to good follow up care is no

Can you state how the lack of interest in your impacted your physical health?
I can remember hating gym because the teacher would make me try everything that "normal kids could do" it was very humiliating having kids watch you try to do something you knew was impossible to do. As a result I was not very active as a child which led to obiesity.

Did you ever realize that no one ever spoke about your arm during physical exams?
yes. I can remember being asked to raise both arms and when I couldn't my mom would explain erb's palsy as the reason and nothing else was ever said--like--is it hurting or bothering you?

Did you ever receive any instructions on how to care for yourself and prevent injury?
Nope, I sure wasn't!!! And still looking!!!!

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

Is your arm colder when you sleep?
yes.

Do you wake up because your arm is cold?
yes. have had that several times. now experiencing it in my right leg(affected side)

Do you often find your arm hand freezing even when using it?
yes. I also have very strange sensations(has caused me to drop things it is such a weird feeling)

Tracy in Tennessee
32yr.robpi

Moving up for Shellie

Thanks for bumping this up. When you are new to the boards, it's impossible to read everything. I had no idea this questionare existed.

How many have always had pain?
NO.

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

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

Did any of you have the shock type pains when you were small?
NO.

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

Does the weather bother you?
NO.

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

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

How many of you were unaware that arm, neck and back problems were related to your arm and compensation?
I FIRST BECAME AWARE OF THIS PROBLEM IN MY NON-BPI ARM AND SHOULDER AT AGE 40, 16 YEARS AGO. THIS YEAR I AGAIN INJURED MY NON-BPI SHOULDER, SO THE PAIN THERE IS WORSE NOW. I WAS NOT AWARE THAT NECK AND BACK PROBLEMS COULD BE CAUSED BY MY BPI UNTIL NOW.

Did any of you realize that compensation and bpi may have caused other health problems?
NO, NOT UNTIL RECENTLY, WHEN I FOUND UBPN.

How many thought it was only an arm and it did not affect the rest of your body.
EXCEPT FOR OVERUSE OF MY NON-BPI ARM, THAT IS WHAT I THOUGHT.

Did you think that the unaffected arm was so physically strong nothing could change it ?
NOT EXACTLY. I NEVER THOUGHT THAT IT WAS THAT STRONG, BUT I GUESS THAT I WAS GOING THROUGH LIFE THINKING THAT I COULD ALWAYS USE MY NON-BPI ARM AND HAND THE SAME AS I ALWAYS HAD. NOW I WORRY -- WHAT WILL I DO IF THIS ARM GETS ANY MORE DEBILITATED?

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 FOLLOW UP CARE.

MY FATHER SPOKE ABOUT EXERCISING MY ARM UNTIL I STIFFENED UP AND FOUGHT HIM SO MUCH THAT HE STOPPED EXERCISING MY ARM. I DO NOT REMEMBER THIS. FROM THE TIME THAT HE FIRST TOLD ME THIS, I WONDERED HOW AN ADULT CAN THINK THAT AN INFANT, TODDLER, OR SMALL CHILD CAN DELIBERATELY FIGHT HIM WITH SO MUCH STRENGTH, FROM A WEAK AND INJURED ARM, THAT THE ADULT GIVES UP.

A COUSIN ONCE SAID THAT SHE WAS THERE WHEN MY FATHER EXERCISED MY ARM AND SHE ASKED HIM TO STOP BECAUSE SHE COULD NOT BEAR MY SCREAMING. THESE SESSIONS MUST HAVE BEEN HARDER THAN HELL FOR MY PARENTS. MAYBE THAT'S WHY MY FATHER STOPPED.

MY MOTHER SPOKE OF TAKING ME TO CRYLE (SP?) HOSPITAL JUST AFTER I WAS BORN. THAT WAS THE FORERUNNER OF THE CLEVELAND CLINIC (WE LIVED IN CLEVELAND SO IT WASN'T FAR AWAY). THEY SAID THAT NOTHING COULD BE DONE FOR ME, SO SHE TOOK ME BACK TO THE HOSPITAL WHERE I WAS BORN. I GOT TREATMENTS THERE, BUT I'VE NO IDEA WHAT "TREATMENTS" I GOT.

IT WAS OBVIOUSLY PAINFULL FOR MY PARENTS TO DISCUSS THESE THINGS, SO I DIDN'T ASK.

I'M SORRY I'M EDITORIALIZING SO MUCH HERE. I GUESS THAT I NEEDED TO VENT. NEEDED TO TELL SOMEONE THAT MY PARENTS TRIED. IT'S TOO LATE FOR ME TO TELL THEM THAT I KNOW THAT THEY TRIED, EVEN THOUGH THEY HAD NO MEDICAL OR EMOTIONAL SUPPORT SYSTEM.

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?
I DIDN'T THINK ABOUT IT. TO ME IT WAS JUST MY ARM. I DIDN'T GO TO THE DOCTOR ABOUT MY ARM, SO WHY SHOULD THE DOCTOR BE INTERESTED IN MY ARM?

Did you ever realize that no one spoke about your arm during physical exams?
NO. SEE ANSWER TO LAST QUESTION.
ONCE, WHEN I WAS ADMITTED OVERNIGHT TO A TEACHING HOSPITAL, THE WOMAN WHO CAME TO DRAW BLOOD ASKED ME A LOT OF QUESTIONS ABOUT MY ARM. MOSTLY I HAD NO ANSWERES. I FELT LIKE SHE WAS OVERSTEPPING HER BOUNDS BECAUSE SHE HAD COME TO DRAW BLOOD, BUT I BORE IN MIND THAT IT WAS A TEACHING HOSPITAL. I WAS RELIEVED WHEN SOMEONE ELSE CAME IN AND THE FIRST WOMAN LEFT. NOW THAT I'M THINKING ABOUT IT, MAYBE IT WAS THE SECOND WOMAN WHO CAME TO DRAW BLOOD. ANYWAY, I WASN'T THERE FOR MY ARM, SO WHY SHOULD SHE ASK SO MANY QUESTIONS?

NOW I ASK, WHICH CAME FIRST -- PEOPLE IN MEDICAL PROFESSIONS IGNORING MY INJURED ARM OR ME IGNORING MY INJURED ARM?

I SHOULD ALSO TELL YOU THAT SOME DOCTORS HAVE PRESENTED ME WITH TWO FINGERS OF EACH OF THEIR HANDS AND ASKED ME TO SQUEEZE WITH BOTH OF MY HANDS. THEY ALWAYS SAY THAT THE DIFFERENCE IN THE STRENGTH OF MY HANDS IS NOTICABLE.

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
NO.

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.

Correcting my post: It was CRILE Hospital.

Adding to my post: I was 20 or 21 when I had a tendon transfer surgery to correct a droop wrist in my BPI arm. Ever winter since then I've had a cold spot on the back of my hand.

Joanie

Thanks Joanie
It's good to keep this post going for new people. It helps answer some questions we all have.

I glad to hear you only have one cold spot my arm and hand are always freezing and I can't really feel any thing hot on my forearm... dumb! LOL...
I use a hot pack and can't feel it on my right arm and its too hot for the left.
Kath

Hi Kath and all.

I haven't been here for a while. I quite often "Lurk". I couldn't believe it when I came across this post.

I'm currently seeking further treatment/advice for my 9yo son who has been complaining of electric shocks for the past 18mths ~ 2yrs which come out of nowhere. He is ROBPI good return to his biceps and hand (I've been told?). Had a dislocated shoulder corrected at 28mths of age. Forearm osteotomy at age of 8. I was told that he couldn't feel pain as a baby because his nerves were damaged.

We have finally seen a neuromuscular specialist who suspects (as I have all along) that he has more damage to his nerves than the doctors first thought - possibly neuroma/s on C5 & C6. He has numbness in small sections of his hand and arm. Extreme pain in his neck (mainly when touched) which extends down his arm. His hand is often cold. Has had episodes of fingers "locking" or being unable to straigten arm. His doctors say they haven't seen this before. Perhaps it is because as the kids get older their parents seek alternative doctors/treatment (?) and there hasn't been the continuity of care.

Paul is having his first MRI this month to see if there is anything remarkable.

Love
Julianne
(Downunder)