United Brachial Plexus Network, Inc.

Ops!

should read "does not meet" not met... bpi slip or my typing is off... LOL...
Kath

Yes, I can see that it would not meet the criteria for any kind of formal study. Boy, wouldn't it be nice if this stuff could be formally studied!!!!

But it is such valuable information from a general interest perspective. I am a mother of a child with BPI. I asked one of the "BPI Specialists" what the long-term effects of this injury were and he actually said he hadn't seen any. He did qualify it later with the suggestion that some of the adults stop seeing him for this injury, so he has no idea really.

I always suspected that there would be long-term effects, and so I've lurked here a few times so that I could be more aware and better understand what my child may or may not be going through now and in the future.

Perhaps a general article in Outreach about areas of pain from an experience point of view (rather than a study point of view) would be a more appropriate place to talk about the findings to this post.

It is such fascinating information, and I would love more of the medical community to be aware that yes indeed people feel the effects of this injury for a long, long, time and that this injury affects us in unexpected, but often common ways.

I'd be happy to volunteer to do something like that with this information...just to see where it might lead. But I respect your original intent with this post and totally understand if you want me to just "butt out" (ha ha ha). It was just a thought I had while reading through all these responses.

Regards,
Lisa Duncan

Lisa

You do not have to butt out! You are not butting in, this information is here to share and support our goals of education and awareness.
I am glad you find this information helpful. It is only by sharing information here that we will be able to move forward and push for a long term study... Not only does this post support those adult/obpi who thought they were alone with this injury but it helps us to speak out about it... most adult/obpi seldom spoke about their arms, pains or emotions pertaining to this injury because no one understood. Now we have people who understand and can compare notes with others who share our injury, here at UBPN.

e-mail me please
KathM@ubpn.org

The new Outreach will have some of this information in it.

I hope you have mailed Nancy@ubpn.org your name and address so that you can get your copy of Outreach...

My 2 cents on pain issues:
I will answer the questionaire soon when I figure out how to do it without having to retype every question(my printer is out of ink & I can't print it out 1st to copy/retype each question....anyhow...

PLEASE don't overlook emotional and phychological issues/toll BPI takes on all of us,children parents and adults. I like the way Michael's mom had him answer the questionaire instead of her. Children must be given a voice & choice in every step of their journey or else it will rise up later in some way.
Overuse of unaffected limbs is the result of denial of pain and/or taking pain as normal when it is not..

Thanks for listening...
Carolyn

to the top

Hello Kath and all,
I hope that we all continue to share all pain issues as new ones come up. It would be our[adults with OBPI]way of keeping statistics...
Kath please post again that questionaire about our pain as I lost where it was posted... or just post what page on this PAIN TOPIC it was located & I'll try to post before I travel on the 12th.
Thanks,
Carolyn

Carolyn...
And you said I had senior moments...LOL..

It is at the top of this post. When you open it the very first post on this thread has all the questions...

My "2 cents" on pain.....Carolyn J..[Finally 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

How many have always had pain?

NOT UNTIL IN MY 40's DID I ACKNOWLEGE PAIN;IN MY 20'S II WORE SPIKED HI HEELS AND REALLY SUFFERED FOR VANITY AND BEING LIKE EVERYONE ELSE IN FASHION.STUFFED DOWN/DENIED PAIN REARED UP MIGHTILYIN MY 50'S.THAT'S WHEN i STARTED TOTAKE EXTRA CARE OF MY UNAFFECTED SIDE[(RT.)

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

NEVER!!!!


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

NEVER COMPLAINED;NOBODY EVER TALKED ABOUT IT!![STUFFED EVERYTHING]

Did any of you have the shock type pains when you were small?
ALWAYS
Did it occur during growth periods or just out of no where?

OUT OF NOWHERE

Does the weather bother you?
YES,ALWAYS

Do you have to take medication for pain and have you always had to take something?
JUST ASPIRIN AS NEEDED

At what age do you think pain begins to be more noticeable?
HAD NO CLUE UNTIL IN MY 40's

How many of you were unaware that arm, neck and back problems were related to your arm and compensation?
NOT UNTIL I FOUND UBPN @ 5 MONTHS AGO

Did any of you realize that compensation and bpi may have caused other health problems?
NOT ME

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

Did you think that the unaffected arm was so physically strong nothing could change it ?
NEVER EVEN THOUGHT ABOUT 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?
SINCE 5 MONTHS AGO I DO MY EDUCATING MY MD AND SELF REFERRED ALTO MY MD HAD TO DO THE PAPERWORK 1ST

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?
BIG TIME!! WHOLE LIFE WOULD HAVE BEEN DIFFERENT....

Did you ever realize that no one spoke about your arm during physical exams?
IN DENIAL,NOT REALLY....

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
YES

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

Carolyn J

How many have always had pain? On and off. I have spasms sometimes which are very painful as well as a burning sensation in my lower arm. I'm also hypersensitive.

Did you ever tell your parents/family you were in pain or did you just accept it as your normal? Didn't tell since I thought it just went with the palsy

When you complained as a child were you told this injury is not painful? We didn't talk about my injury. it was just there.

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? I still get them from time to time.

Does the weather bother you? Not really

Do you have to take medication for pain and have you always had to take something? As my pain is on and off I don't generally take anything.

At what age do you think pain begins to be more noticeable? I know now that I'm 30 I have more and more pain for longer spells.

How many of you were unaware that arm, neck and back problems were related to your arm and compensation? This is the first I've heard of it.

Did any of you realize that compensation and bpi may have caused other health problems? Again this is the first I've heard of such things.

How many thought it was only an arm and it did not affect the rest of your body. I've always wondered if it didn't affect other things.

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? I am now 30 and have not been to a dr for this since I was 10. No dr. I have ever gone to since then has ever even mentioned my injury.

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 don't know.

Did you ever realize that no one spoke about your arm during physical exams? Most of the time I don't even think about it so no.

Did you ever receive any instructions on how to care for yourself and prevent injury? Nope. Just told way back when that if I had anymore damage to my shoulder I could lose total use.

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

Is your arm colder when you sleep? Not sure.
Do you wake up because your arm is cold? I don't think so
Do you often find your arm hand is freezing even when using it?sometimes.

Moving this to the top for Sarah & Carolyn mom of Charlotte.

This might help to explain some of the pain issues.

Kath