United Brachial Plexus Network, Inc.

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?

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

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

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

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

Does the weather bother you?

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

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

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

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

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

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?

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?

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

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

Is your arm colder when you sleep?
Do you wake up because your arm is cold?
Do you often find your arm hand is freezing even when using it?



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

Kath

> 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
RESPONDANT AGE 11
>
> How many have always had pain?

Pain Some of the time /at least once a day
>
> Did you ever tell your parents/family you were in
> pain or did you just accept it as your normal?

usually accept it as normal
>
> When you complained as a child were you told this
> injury is not painful?

no
>
> 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 nowhere , more frequent during growth, I'm now growing
>
> Does the weather bother you?

yes, I've always called it my grumpy arm, if the weather is cold it hurts
>
> Do you have to take medication for pain and have you
> always had to take something?

sometimes, when I can't stand it
>
> At what age do you think pain begins to be more
> noticeable?

For me pain got more noticable at age seven, thats when pain started really bugging me
>
> How many of you were unaware that arm, neck and back
> problems were related to your arm and compensation?

I am , my therapist says I already have functional problems
>
> Did any of you realize that compensation and bpi may
> have caused other health problems?

no, like what?
>
> How many thought it was only an arm and it did not
> affect the rest of your body.

I thought it was only the arm up until I was nine
>
> 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?

now I have very good pt and ot
>
> 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?

Yes when I go to my regular doctor.
>
> Did you ever receive any instructions on how to care
> for yourself and prevent injury?

no not to this day.
>
> Do you have poor circulation,lack feeling on some
> parts of your arm,face, hand, ear and neck

yes, hand , and arm, eye lid, face, ear-- colder and feels different than other side
>
> Is your arm colder when you sleep?

yes
> Do you wake up because your arm is cold?

yes
> Do you often find your arm hand is freezing even when
> using it?

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

I let Michael reply to this because
I wanted folks to know that even these young ones can answer, and give important info.

Some of his answers hurt, because it is hard to know that even one so young suffers everyday, and I have the feeling this will only get worse... as he ages.

Sorry, if we took up too much space.

Kathleen:
These are excellent questions and I'd like to participate but am not sure of the best way for you. On the OBPI forum site or to your e-mail? Might be easier to correlate the answers from your e-mail. Your choice.

John P.

John and Kath, If you post the answers here then I can read them and know what to expect for my young son.-Kari

Kathleen,
Would you be willing to include in this questionaire what types of medical intervetions and stuff people have had... I think it would be intresting to see the natural progression of this injury and the progression with the different types of interventions (surgery, e-stim, you included therapy, splints ect). I realize this is only question 1 but as I read the answers I wondered if they had surgeries, and all that other stuff. It would also be intresting to see what type of function each has... maybe the more there is some relation to that as well... anyway... not trying to take over your survey here... just very intrested and not sure I can wait for the results!!!
Thanks,
Kristie

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?
I have always had pain but just ignored it

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

When you complained as a child were you told this injury is not painful?
I didnt complain about my arm

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

Did it occur during growth periods or just out of no where?
I cant really remember, mostly when i slouching on a chair or running.

Does the weather bother you?
Yep, my arm goes cold and my finger nails go blue!I wear one of those gloves with out the fingers in class now.

Do you have to take medication for pain and have you always had to take something?
I didnt take anythin for the pain because i would have to ask my mum for a pain killer and i wouldnt want to tell her my arm hurt incase she thougth it was her fault.

At what age do you think pain begins to be more noticeable?
For me it was about 15, thats when i really started noticing my arm and became more aware about it. Maybe i just felt the pain more then and realised it wasnt normal.

How many of you were unaware that arm, neck and back problems were related to your arm and compensation?
I didnt know that...i do now.

Did any of you realize that compensation and bpi may have caused other health problems?
no, what kind?

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

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

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?
Never seen a doctor.

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?
My parents lack of interest made me sad! But iv changed all that now.

Did you ever realize that no one spoke about your arm during physical exams?
During phyical exams? Noone EVER spoke about my arm.

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
Two of my fingers, the left side of my hand and my wrist and shoulder.

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? Yes especially when im playin my trumpet.

Maybe we can get this is the next OUTREACH newsletter. I am not too computer savvy and am really confused as to how to answer this questionairre !

Hi Kath

I have emailed you a suggestion and an idea as to how this information could be collected more easily and efficiently. PLEASE don't think that I am interfering or condescending; I certainly don't mean to give that impression; it's just that I have done this kind of thing before, and I am more than happy to give you the benefit of my experience.

Hoping to hear from you..

Liz B

Thanks Lizzy I will write back to you...
I appreciate your help and will speak with you about it... That is what these questions are about learning from others experiences. I have tons of questions not posted.

Thanks again
Kath