United Brachial Plexus Network, Inc.

Michelle

Your answers as a 16 year old --- would have been the answers I would have given at your age... so I guess you are right on target...
Thanks
Kath

Kristie

The intent of the e-mail I sent was to try to begin to gather information and compare notes with others who like me did not have the contacts or a support network until now.

My thoughts were to get the information from adults who until recently did not ever talk about their injury and some who still have a hard time speaking about it even with their own families. Many would have a hard time posting on emotional issues pertaining to growing up bpi for fear of scaring parents who are already so worried about their child's future. Even though most of the children are obpi there are still others who are tbpi and also would benefit from the questions and answers on emotional issues faced while growing through the formative years. Along with the parents input on the General Board on parenting issues, surgery and recent information on PT/OT.

I thought we could compare notes and then share the information on the Adult board... as a way of supporting the adult population of OBPI/TBPI and helping with future care and prevention for the children who at present (believe it or not) are getting better care then we did...
The information we gather from these questions could then be used to press for better care for those of us who are adult/obpi/tbpi and prevention of future injury for the children...

There are so many questions that need to be asked and it seemed - No one is asking - so I thought if I started asking questions perhaps between all the life long experiences that many of us shared we could come up with a good questionnaire to share with the entire community and of course the results of the questions could be posted to support the younger obpi/tbpi -

I just thought I would start with the population who had the longest life experience with bpi in general and also who really need to put the pieces of their personal injuries together. It is important to remember that many adult/obpi never had any information and thought they were the only ones with this injury - many are much older... late teens - 20-30- 40 -50 - 60 and I just spoke to a 75 year old woman who saw an article in local paper and was amazed to find it... we have a lot of catching up to do... I just mailed her two copies of this years Outreach

It was not until our late teens that many of us realize our differences we just kept moving on and that was a good thing... we would not want to put up any barriers for the younger population. Most adults have been able to meet the challenges life has presented them with. I would hate a study to prevent any child from taking chances and trying things others think they cannot do... each injury is different. And children must be encouraged to reach and try and move forward. We would never want a child to focus on their arms so that they limit their own potential.
Kath

Ok, I'm giving it a shot,

How many have always had pain?
Always

Did you ever tell your parents/family you were in pain or did you just accept it as your normal?
Always accepted it as normal, sometimes someone would ask and depending on circumstances I'd tell them yes or no. Sometimes its hard to recognize the feeling as pain.

When you complained as a child were you told this injury is not painful?
No, they usually believed me. My sister thought it was crap but thats another story. .

Did any of you have the shock type pains when you were small?
not that i can remember

Did it occur during growth periods or just out of no where?
Usually growth spurts but also, i was really active like climbing trees etc and I was pretty accident prone.

Does the weather bother you?
not at all

Do you have to take medication for pain and have you always had to take something?
They've been giving me ibuprofen sinc I was eight, recently I've stopped taking that because it tends to give me depression as a side effect.

At what age do you think pain begins to be more noticeable?
I have no idea, for me it got significantly worse around age19.

How many of you were unaware that arm, neck and back problems were related to your arm and compensation?
I kind of figured that actually.

Did any of you realize that compensation and bpi may have caused other health problems?
Scoliosis is the only one ever discussed.

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 saw an orthopedic surgeon from day 1 (literally) and then once a year up until about age 17, then from age 19-now I've sen him every couple of months. My ped was pretty good at making sure we were going to those visits and writing referrals and all.

That's all ive got for now, I'd write more but I havee finals to contend with.
Cheers,
Carrie

Hey Carrie,

Did/does the orthopedic doc help any? Just curious as to the kinds of doctors that are seen.

Good Luck with finals. We will be thinking of you.

Joy

Great questions Kathleen. I am looking forward to the results of everything that you are compiling.

Joy

Kath,

I would answer these questions now if I didn't have to re-type the question before each one.

Does LizzyB say she has an easier way to do the questionnaires? It would take me forever, not to mention a bout with carpal tunnel, to do this the long way.

Complain, complain, complain...LOL!

-Stephanie

Stephanie

Copy - paste then answer until we find the better way and have it worked out for the rest of the questions....
Come on girl I know you can do it... If I did not have cut and paste... I would never be able to do anything...
thanks friend
Kath

How many have always had pain?
Never had pain! Just some annoying "electrical" shocks under skin, it happens in average every two weeks, it lasts for 4 - 8 hours.

Did you ever tell your parents/family you were in pain or did you just accept it as your normal?
I told them about these little electrical shocks.

When you complained as a child were you told this injury is not painful?
No, noone told me that.

Did any of you have the shock type pains when you were small?
May be is the same thing I am talking about, but most of the time they annoy me, but not hurt me.

Did it occur during growth periods or just out of no where?
It occured me all my life long, since I remember, until today.

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?
Everything is the same since I was born. Not pain

How many of you were unaware that arm, neck and back problems were related to your arm and compensation?
I have always been aware that it could cause such problems.

Did any of you realize that compensation and bpi may have caused other health problems?
I can imagine it, but I don't know exactly?

How many thought it was only an arm and it did not affect the rest of your body.
It didn't affect the rest of my body until now, but I always knew it will happen.

Did you think that the unaffected arm was so physically strong nothing could change it ?
Yes, but not anymore.

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, just sufficient 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? Not until now

Did you ever realize that no one spoke about your arm during physical exams? Sometimes , 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
lack of feeling, yes, in the inferior part of the arm, and in the external part of my hand

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

Sorry, forgot to tell:
I am 32, Severe ROBPI.

How many have always had pain?
No pain, just electrical shocks throughout my life, very infrequent!

Did you ever tell your parents/family you were in pain or did you just accept it as your normal?
I mentioned shocks when I was a kid, but didn't take them too seriously as they passed in a minute or two and didn't happen much

When you complained as a child were you told this injury is not painful?
No, I wasn't told that.

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?
It

Does the weather bother you?
Occasionally as I get older, but I have arthritis now.

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?
Mine seems to be more age related with arthritis.

How many of you were unaware that arm, neck and back problems were related to your arm and compensation?
After I had children and started to carry babies and buckets around the house, I became VERY aware!

Did any of you realize that compensation and bpi may have caused other health problems?
I do now that I have back and leg problems on the bpi side.

How many thought it was only an arm and it did not affect the rest of your body.
I didn't think it affected my whole body until now.

Did you think that the unaffected arm was so physically strong nothing could change it ?
Yes, again until my late twenties, early thirties when I began to get carpel tunnel.

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 physician for my bpi since I was 13.

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 would have taken better care had I know about overuse syndrome in the unaffected arm.

Did you ever realize that no one spoke about your arm during physical exams? Yes. In all of my 52 years, not one doctor has felt comfortable discussing it with me. Most ignore it as much as possible.

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?
Poor circulation, less sensation in arm, never noticed a difference in face, hand ear, or neck.

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