United Brachial Plexus Network, Inc.

Joy-
I don't know if the orthopedist helps more or less than a neurologist, but he's been with me since I was born and I still see him, he's referred me to other doctors when needed and we get along well. He's an upper extremity specialist who has seen BPI people before, but hes not a BPI specialist.
hope that helps
Carrie

Carrie,

I was curious. When I moved to Florida in 1996 my doctor from PA told me to look for an upper extremity specialist. Yet, when I tried to schedule an appointment with the "best" one in the county he refused to take me. I found out years later it is because he does not do BPI people. He always sends them to another doctor.

Thanks for answering.

Joy

Gee Kath, Am I the last to answer? I'm going to cheat and not take up that much space.
Answers to questions 1 - 4 I guess growing up I did not realize that my arm had a problem. I figured I was right handed and left not as strong. I remember being told that I had growing pains. Can't rem what I complained about.

5 Yes the weather bothers me.
6 Growing up I never took meds. When I reached 29 or 30 I developed headaches and tried to find meds.
7 Any meds I take do not help my arm. I cannot take neurotin and am told that is the only thing that will touch nerve pain. I take meds for other things.
8 I began to notice the ache and pain in my late twenties esp when I would use the arm alot which was just being "normal use"
9, 10, 11, 12 I became aware that my arm probably had effects on the rest of my body about 15 years ago.
13 I had no care when growing up. I found a small brochure in the baby book about infintile paralysis with exercises shown, perhaps mom did these when I was very young. Around 1985 when I went for a physical for a job, the dr told me I should always sstay in areobics or keep an exercise program, but he failed to memtion why. Of course now, I;m told there is nothing that can be done. Never received any instructions on how to take care of arm. Just did what I could and survived like so many of us have.
Circulation is no very good. Arm falls asleep esp at night and there is less sensation on left arm hand than right

The older I get and the less I can use my arm, the worse it seems to get. Hurs if I use hurts if I don't. My pain has always seemed to be a deep ache and not the shooting/firing pains that some talk about.
Steady constant pain, worse at soom times than others. like weather, overuse and coldness.

55 years old left obpi. And still hanging in there. Sorry I didn't follow the format. You can sort it out easier than I can type it. (obpi wrist still broken)
Sharn

Kath: Sorry for my tardy response to your question.I've been away from the computer for awhile. Here goes.

63 years, ROBI

How many have always had pain?
Other than muscle soreness following some sort of physical exercise I can't recall having pain although earlier this year I experienced a different, nagging pain that lasted for several weeks. It gradually diminished and has not returned.


Did you ever tell your parents/family you were in pain or did you just accept it as normal?
No

When you complained as a child were you told this injury was not painful?
Not applicable

Did any of you have the shock type pains when you were small?
Not that I can recall.

Did it occur during growing periods or just out of no where?
Not that I can recall.

Does the weather bother you?
No

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

At what age do you think pain begins to be more noticeable?
Not applicable

How many of you were unaware that arm, neck, and back problems were related to your arm and compensation?
I am fortunate not to have developed other serious arm, neck, or back problems but it makes sense that BPI compensation could be a contributing factor to other ailments. My physician has told me to expect arthritis in my left shoulder but it hasn't happened yet.

Did you realize that compensation and bpi may have caused other health problems?
Not until about 2 years ago.

How many thought it was only an arm and didn't affect the rest of your body?
Not until about 2 years ago when the possible impacts to my left arm were discussed with my current physician.

Did you think that the unaffected arm was so physically strong nothing could change it?
For me, overuse of my left arm gets lost in everyday living. I'm more aware now of the possibilty of arthritis showing up after having discussions with my physician and reading of the experiences of others in the forums. However, after watching my parents experiencing strokes in their later years, I'm more concerned about that possibilty in the future.

How many of you have had really good followup care from physicians -- sending you to PT and/or checking to yours are moving keeping track of your ROM?
My physician always examines my unaffected and BPI arms during my annual checkup. I was referred to a BPI specialist last year when a new nagging pain was experienced but by the time I could get an appointment, the pain had stopped.

Can you state how the lack of interest in your arm impacted your physical health?
Not applicable

Did you ever realize that no one spoke to you about your arm during physial exams?
Answers to physician's questionaires and my surgical scars have always been noticed by various physicians over the years. They usually examine relative strength and ROM.

Did you ever receive instructions on how to care for yourself and prevent injury?
No

Do you have poor circulation, lack of feeling on some parts of your arm, face, hand, ear, and neck?
Circulation to BPI arm appears to be normal. Sensation to touch is also unaffected except at surgical sites.

Is your arm colder when you sleep?
No

Do you wake up because your arm is cold?
No

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

John P.

Here you go, Kath.

Erica DeAnn - Age 25, Right BPI

How many have always had pain? I've always had pain.

Did you ever tell your parents/family you were in pain or did you just accept it as your normal? When it was really bad, I couldn't hide it. It was comforting sometimes to get sympathy. Other times, I would keep it to myself.

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

Never. My family was always understanding.

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

Yes....that is the main pain I suffered from...both as a child and as an adult.

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

Out of nowhere...but sometimes, it will coincide with when I'm ill with a cold or flu.

Does the weather bother you?

Nope.

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

I would always take children's aspirin as a kid---but only during the real bad pain episodes. A few years ago, I began taking Darvaset to help with the pain. The past 2 years, I've taken nothing...I think seeing a chiropractor for my 'good' side, has helped with the 'bad' side too.

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

Probably around 10 - 12 for me.

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

I definitely know..hence the chiropractor bills!

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

Besides the back and neck? No...I did not know that.

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

I knew it affected my other side physically.

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

When I was younger, yes. Now, I feel the pain in the good arm...which is very scary.

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?

I haven't seen a doctor for my arm since I was about 9.

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 couldn't answer that. I don't know if doctor's could have done anything for me. A lot of you can move your fingers and arms...my arm is bent at a 90 degree angle, with no movement, no finger movement...it's entirely immobile and numb from the shoulder down.

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

Yes, but why should they if I'm there for a separate reason?

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

I vaguely remember going to a school to be shown how to button buttons, snap snaps, use zippers, etc. Preventing injury was not discussed....as far as I can remember.

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

My good hand's fingers sometimes get numb.

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?

I can't use my hand.

> This is the first in a series of questions.
> I am trying to gather some information on our
> adult/obpi community. There are no long range studies
> on OBPI and the long term effects that compensation
> creates for us. We must begin with ourselves.
>
> These questions are on the subject of PAIN as it
> relates to the obpi both as children and now as
> adults
>
> How many have always had pain?
MORE ACHING IN THE BP ARM WHEN I WS A CHILD. PAIN NOW THAT I'M OLDER FROM THE OVERUSE
>
> Did you ever tell your parents/family you were in
> pain or did you just accept it as your normal?
I TOLD THEM,BUT THEY SAID I WAS JUST TRYING TO GET ATTENTION
>
> When you complained as a child were you told this
> injury is not painful?
YES
>
> Did any of you have the shock type pains when you
> were small?
> YRS
> Did it occur during growth periods or just out of no
> where?
>
> Does the weather bother you?
YES, BUT MAY BE RELATED TO THE SEVERE ARTHRITIS
>
> Do you have to take medication for pain and have you
> always had to take something?
VIOXX AND A MUSCLE RELAXER--NOT UNTIL 3 YEARS AGO
>
> At what age do you think pain begins to be more
> noticeable?
40
>
> How many of you were unaware that arm, neck and back
> problems were related to your arm and compensation?
BECAME AWARE ABOUT 5 YEARS AGO
>
> Did any of you realize that compensation and bpi may
> have caused other health problems?
NOT UNTIL ABOUT 5 YEARS AGO
>
> How many thought it was only an arm and it did not
> affect the rest of your body. ITHOUGHT THAT UNTIL OVERUSE TOOK OVER AND I RESEARCHED PARAYSIS AND COMPENSATORY ISSUES
>
> Did you think that the unaffected arm was so
> physically strong nothing could change it ?
YES, AND WAS PROUD I COULD DO ABOUT ANYTHING A 2 GOOD ARMED PERSON COULD DO
>
> 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?
> HAD PT FROM AGE 7-9
> 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? IT HAS MADE ME ANGRY THAT THERE IS NOT A DR WHO WANTS TO ADDRESS IT. THE ATTITUDE IS- YOU'VE HAD IT ALL YOUR LIFE-IT'S NOT GOING TO CHANGE--IT'S NOT AN ACUTE PROBLEM--
>
> Did you ever realize that no one spoke about your arm
> during physical exams? YES
>
> 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 NECK AND HAND
>
> 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? FINGERS ON BOTH HANDS SUE TO THE ARTHRITIS
>
>
>
> Thanks for answering many of these question many come
> from the past three years of posts and e-mails.
>
> Kath

Thank you all

Please keep these answers coming...

And anyone who does not want to answer on the board please send me an e-mail... I am tracking our answers and will post the results...

Kath

How many have always had pain? I HAVE.

Did you ever tell your parents/family you were in pain or did you just accept it as your normal? I COULDN'T HIDE IT. I WOULD (AND STILL DO) SOMETIMES YELL OUT WITH THE PAIN, AS IT CAME IN SPASMS.

When you complained as a child were you told this injury is not painful? NO. THE DOCTORS JUST DIDN'T KNOW WHY I HAD SUCH HORRIBLE PAIN, WHICH ONLY FLAIRED UP WHEN I WAS SICK OR HAD A FEVER OR, MORE RECENTLY, WAS STRESSED.

Did any of you have the shock type pains when you were small? I DON'T THINK SO.

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

Does the weather bother you? YES. EXTREME COLD OR DAMPNESS BRINGS ON THE PAIN, BUT NOT AS SHARP, MORE A DULL TWINGE.

Do you have to take medication for pain and have you always had to take something? YES. I USED TO TAKE CODINE, THEN VICODIN, BUT BOTH STOPPED WORKING WELL. NOW I'M ON NEURONTIN, A MEDICATION THAT TARGETS NERVE PAIN. I HIGHLY RECOMMEND IT.

At what age do you think pain begins to be more noticeable? I'VE ALWAYS HAD IT, BUT AS AN ADULT I EXPERIENCE MORE STRESS, SO THE EPISODES HAVE INCREASED TO ABOUT EVERY FEW MONTHS FROM JUST A FEW TIMES A YEAR.

How many of you were unaware that arm, neck and back problems were related to your arm and compensation? I HAVE A BAD NECK AND SHOULDER, BECAUSE MY SHOULDER MUSCLES ARE USED TO COMPENSATE FOR THE MUSCLES IN MY ARM THAT DON'T WORK.

Did any of you realize that compensation and bpi may have caused other health problems? YES. ARTHRITIS AND CARPAL TUNNEL SYNDROME IN MY GOOD HAND ARE ALREADY STARTING, AND I'M ONLY 30.

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

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

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? NOPE. I DID SOME AS A KID, BUT NOTHING FOR YEARS.

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? NOT SURE HOW TO ANSWER THAT ONE.

Did you ever realize that no one spoke about your arm during physical exams? NOPE, THEY ALWAYS DID SPEAK ABOUT IT.

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. VERY MUCH SO.

Is your arm colder when you sleep? EXTREMELY.

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

Do you often find your arm hand is freezing even when using it? I DON'T USE IT, BUT YES, ITS OFTEN FREEZING, EVEN IN NICE WEATHER.

I THINK I ALREADY ANSWERED THESE FOR YOU KATH, BUT I WILL AGAIN IF IT WILL HELP.

How many have always had pain?
NEVER HAD PAIN GROWING UP WITH EITHER ARM, PROBLEMS STARTED ONCE I REACHED 40. NOW IT IS PRETTY MUCH A CONSTANT.

Did you ever tell your parents/family you were in pain or did you just accept it as your normal?
N/A UNTIL RECENTLY, NOW I TRY NOT TO BURDEN MY FRIENDS AND FAMILY BY(WHAT I CONSIDER TO BE) WHINING, BUT THOSE WHO ARE CLOSEST TO ME I DO OPEN UP TO OCCASIONALLY.

When you complained as a child were you told this injury is not painful?
MY FATHER ONCE TOLD ME THAT AS A BABY (TINY BABY) I WOULD CRY FOR NO REASON, AND HE KNEW/FELT THAT IT WAS BECAUSE OF MY ARMS. SO NO IT WAS NEVER DISCUSSED,AND AS A TODDLER I NEVER KNEW OF PAIN?

Did any of you have the shock type pains when you were small?
NO, I USED TO EXPERIENCE AND STILL DO A STRANGE THING WHERE MY THUMBS AND SOMETIMES MY FINGERS WILL "FREEZE UP" LITERALLY I HAVE TO "UNFREEZE THEM" MANUALLY, BY USING THE OTHER HAND TO GET THEM MOVING AGAIN.

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

Does the weather bother you?
YES, I FEEL STIFFER DURING COLD WEATHER (so why do i live in michigan haha).

Do you have to take medication for pain and have you always had to take something?
NO

At what age do you think pain begins to be more noticeable?
WE HAVE SEEN I THINK, THAT IT EFFECTS ALL OF US DIFFERENTLY. MAYBE DUE TO HOW MUCH WE HAVE OVERUSED OURSELVES? MAYBE DUE TO SEVERITY OF INDIVIDUALS INJURY? AS I HAVE STATED, MINE PAIN CAME OF AGE AT EXACTLY 40.

How many of you were unaware that arm, neck and back problems were related to your arm and compensation?
I WAS TOTALLY UNAWARE, UNTIL I HAD VISITED MY 7TH OR 8TH DOCTOR WITHOUT ANY RELIEF. THEN I KNEW IT HAD TO BE RELATED, THERE WAS NOTHING LEFT THAT MADE MORE SENSE THEN MY B.P.I,

Did any of you realize that compensation and bpi may have caused other health problems?
NO, WAS NOT

How many thought it was only an arm and it did not affect the rest of your body.
I REALIZED THAT SINCE I AM BI-LATERAL IT WAS BOTH ARM/SHOULDERS ETC. ETC., I NEVER REALIZED IT COULD AFFECT THE ENTIRE BODY.

Did you think that the unaffected arm was so physically strong nothing could change it ?
SINCE BOTH MY ARMS ARE AFFECTED, IN THE BACK OF MY MIND I SOMEHOW KNEW THAT MY STRONGER ONE COULD NOT HOLD OUT FOREVER. IT DIDN'T MAKE SENSE THAT IT WOULD.

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?
I HAVE NOT HAD A DOCTOR TAKE INTEREST YET!!!

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?
WITHOUT PROPER ONGOING MEDICAL ATTENTION AND ADVICE, I PLOWED THROUGH LIFE THINKING I COULD PROVE I WAS INVINCIBLE!! I WOULD HAVE PAID BETTER ATTENTION AND PROBABLY NOT OVERSTRESSED MYSELF AS MUCH AS I DID. I ALSO THINK I WOULD HAVE PAID BETTER ATTENTION WHEN I STARTED LOSING ROM, IF SOMEONE WOULD HAVE BEEN THERE TO ADVISE ME IT MIGHT HAVE MADE SOME THINGS EASIER.

Did you ever realize that no one spoke about your arm during physical exams?
YES, WHICH I FOUND VERY STRANGE ALL MY LIFE. WHEN THEY WOULD SAY HOLD YOUR ARMS STRAIGHT OUT AT YOUR SIDES AND I COULDN'T THEY WOULD JUST TAKE THE EXPLANATION OF ERBS PALSY AND THEN MOVE ON AS IF I HAD SAID I HAD A WART??

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?
I THINK THE CIRCULATION IS BAD IN MY HANDS AS THEY ARE ALWAYS COLD.

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

I keep looking for some of the "Boys"... Any one know where Michael and Steve L are ???? MIA....

Bumping this up top again

Kath