United Brachial Plexus Network, Inc.

Hi All, I guess Kath was right about not posting lately. I actually forgot how to get on the site. Something must have changed, it couldn't be me LOL. I am now considered a guest ??? As it didn't say welcome Sharon.

Hey Kath or anyone, I want to know more about this "body boundry" thing. I know what you mean as I tend to have that problem but always figured I was not watching where I was going or my judgement for the day was way off. And of course the best one: Guess they messed up my brain some along with my arm, shoulder and whatever else.

What do you think causes this ????? I can go for times on end without this problem and then wham... for days on end I run into everything, door ways, the end of the bed, the corner of the table. I even shut my obpi arm in the freezer door, (not just once, but twice) After the second time I left the door to close on it's own. Dam that hurt. My daughter sees some of the bruses and tells me that if my doc sees them, she might be blamed for parent abuse.
LOL...

Do any of the tbpi's have this problem or is it something special that we obpi's have. Seeing we have soooooo many special quirks about us, what's one more.

Hope you all have good healthy holidays and hope to hear from you. Sharon

I have this problem as well and I am a TBPI! My OT a year ago said it was because of my head injury but now after reading what what you wrote I am wondering as well....

I loved what you wrote about what your daughter said... I had four kids who think of the funniest things to say...

I am curious if anyone else has this problem.

yes i have it too, i always assumed it's because i have no feeling in the arm, my brain doesn't know where it is. it gets lots of knocks, scratches, bruises i find when i'm showering, but have no idea when they happened. as the arm is shorter and smaller than the other one since the bpi it could be that i can't relate to its new size, who knows? the other possibility is the balance issue, we all use our arms all the time even unconsciously to keep our balance, i was right handed too before the bpi and having only 1 to use as a balance now means i'm always banging into door frames, walls, i often knock my toddler over too...guess it's just a bpi thing!

Hi Sharon...

It seem we were comparing notes over a year ago and that is when we started to see a pattern... As for children abusing you.... >>>>LOL>>>>
I found this board two years ago and I am still learning the very many ways this injury effected my entire body...
Have any troubles with hot and cold water???? I am right bpi I burn myself in every restroom ... I forget to turn on the cold water first!!!! .... I know the cold is on the left but I don't remember I have a right hand to turn it on with....LOL.... Not forgetful its a bpi thing!!!!!!!
Think about how many times you bump into things and how many times you are not aware that someone is on the bpi side of your body...???

How about how many times you walk around with the same darn piece of paper in your hand....LOL...
Bumping the bent elbow is common...

when we were injured as babies somehow our brain did not connect the fact that we have an arm... so we forget...
I think that leads to the fact that we have possibly no body boundary on the bpi side... that is we are unaware of how close something is to us...

Some others mentioned that they had balance issues too. I don't...I just bump the arm a lot ... and no I don't get bruised...LOL ... for such fair skin you would think I would get black and blue ... but I never do...
I did fall this week running up the stairs and realized that I don't put my right hand out to save myself.. ouch... I do pay more attention now that I am learning more ...and notice lots of stuff I never paid attention to before. I think I am so curious about the way this effects our entire bodies... and brains... can you spell? were you switched from right to left... sorry for forgetting are you right or left bpi??? LOL...
How is your circulation in the bpi arm? ... Mine is poor ... freezing arm...especially when I sleep then its my face and neck too! I need one armed pjs...LOL ... also do you have Horner's?
Then your face ages differently ... not on bpi side...LOL ... tons of questions on this injury?

Mindy... I don't know about body boundary for tbpi as you had a mature system when you were injured... tbpi know that they had an arm and lost it ... so you seem to be aware of your body boundaries ... except you forget the arm needs to be protected....

Because this is a birth injury we forget we have an arm....... and you forget you have to take care of your arm now...LOL....

Obpi have this from birth and no one explains to us about it .... LOL ... so it bump and bump and we think we are clumsy ... so many of the issues we face were never spoken about ... many of us never had access to the medical records pertaining to this injury...Many of our families thought once we got some movement it was best to keep looking ahead and not to talk too much about it ... and many were told that was all that could be done ... so they focused on what we could do instead of what we could not do...and in fact most doctors ignore the fact that we are injured and almost pretend that it is nothing ... and many encouraged our parents not to let us take advantage of our injury to get out of doing things ... so we were left in the dark for many years assuming we were the only ones injured like this....
As children we did not have the words to tell them what was wrong and also they did not listen...
the doctors told parents that there is no pain with our bpi... duh.... not true! I could be wrong but I think it makes some uncomfortable because this birth injury is preventable with proper education...
There is a need for a long range study on OBPI because we have not had the benefit of proper medical care for this injury ... and many of us have traits that are definitely from the obpi ... Since finding UBPN we discovered lots of common traits ... caused by birth injury. Most obpi thought until we found UBPN that we were the only ones with a rare birth injury... We have always been bpi ... and adapted ... and compensated...however most of us older ones are loosing lots of function in the unaffected arms... Because by age 25 we are long term bpi and have compensated all of our lives...
Kath

All these years, I thought it was because I was a klutz. I guess we may all just be bpi klutz'.

Hey Kath, I'm let obpi and was always right handed so I never have really stuck out my left to do anything. I tried to break my fall with my left (when I broke my right arm) but the message never reached the arm. My arm has always been colder and now lately I find I can squeeze my dish rag out with my left (not too well though) and it's not as hot as with the right.

Lately my left wants to "go to sleep much more quickly than it used to. But then so does my right now. I have not really noticed if I am aware of people or something being on my obpi side as I am hard of hearing on that side anyway and try to position my right ear/side towards the person. I will now be aware and test it out. Interesting.

I always thought my left eye was different but no one ever mentioned it until I found an old osteopath that noticed it right away. He also found that the plates (the three parts of the skull that are somewhat separated so they can breath) were out of wack and would be stuck over one another. Like an earthquake. Then there was the head exray early on that showed a fracture of the skull that had healed.

I guess I had not thought of the ballance issue. I knew that my arm throws off the body structure (how well we all know this)
And now that the firbrmyalgia shows up positive I never really dont know what causes what pain. When I have what the neuroligist calls seizures (I called them dizzy spells not knowing the difference) I do tend to tip to the left.

I do try to remember that there were no answers or guidelines to lead us obpi back then like there may be now. No one really knew what side effects there would be. I too, have been told there should be no pain. Yea, right. Until I found the board I was just about ready to believe it was all in my head. The last good doc I had when I ask him if I would lose all use of my arm gave me an honest answer. He really did not know, but he didn''t think I would.
And of course two neurologists and two very good other osteopaths have told me there is really nothing that can be done, expecially at this stage.

Depression over not being able to do the work I know how to causes me problems but I am handling this better. Better than what I don't know LOL And with the memory problems there is no way I can learn a new trade. I go in streaks about spelling. I know how to spell something but it comes out wrong but it still looks right. Kinda weird huh>>> And I will and do transpose numbers and letters. I can't imagine anyone wanting me for a bookkeeper or an accounts receivable specialist.

Question::::: Lately I've been shakey, exp the left arm and hand duh>>> It does not feel like my blood sugar but different. Have you experienced this? Also does not feel like a bucket of nerves either. I can tell the difference on that too.

Who would or could ever imagine that an injury such as ours would ever be so devistating and complicated. Can't even find a good chiropractor any more let alone an old fashion osteopath. My doc now is an osteopath but will not give me adjustments,. as she thinks my osteoporsis is a factor. I told her to crack my neck and back anyway and I would sign a paper releasing her from damages if she broke my neck but she thought I was kidding.

Oh well, life goes on and on and on. I only hope some one younger than us is keeping notes to compare our various problems against the youger ones who have had surgury and see how their outcome will be. Later.....Sharon

Hi Mindy, I don't recall seing your name before but that does not really mean anything. A late welcome to you. My dau is now 36 years old and stills comes up with the craziest things. A chip off the old block. Don't rule out head injury. I have head injuries (not proven) I won't do an MRI very clausterphobic. Like I told the doc last week, if they have not fond anything up to now, she might just as well forget it. No one will be cutting into my head at this age. 20 or 25 years ago, maybe, but not now. When I leave this world they can have the whole body to look at for a while before I'm creamated. It's bad enough trying to take the meds that dont agree with me. That's another story.

Many times when I read what a tpbi writes, it's hard to understand the surguries and I have a hard time relating to the "suddenness of not being able to use an arm" As I grew up with this problem I don't know the dif. Write to me anytime.
Peace and Blessings Sharon

Hi Jenny, I don't recall ever knocking my toddlers over but that's interesting. When I run into the sides of door frames when someone happens to be there with me, I look at them and say "did you see that? It jumped right our and hit me" They look at me like I'm nuts. Sometimes I laugh sometimes I say it very seriously, just depends on what mood I'm in. LOL
Keep smiling. Sharon

WOW Sharon

I just read a note on the bones in the babies head on the general board... it was a question for Ken Levine... and now you talk about it happenning to you...
As for hard of hearing... I never had my hearing checked but I can only use my left ear to talk on the phone... hmmmmm

I wrote about the hot/cold water issue... that is so annoying... I forget to reach for the cold water on theright - because I am right bpiLOL... got that one mixed up...
Some of the things I discovered since finding this board were so amazing to me!... things that really annoyed and bothered me are things I have no way of controlling because they are related to obpi... and that was a good feeling... because I would beat my self up over ...dumb things I could not control... like the hot water... my Mother constantly would remind me to reach on the right first... I just could not seem to remember that.... nice to know its not my fault... but I still hate burning my hand...LOL.... of course the right does not feel the hot...

As for your "un-affected arm" I asked the same question several years ago... and was told one thing does not related to the other... hmmmm now I guess that means the entire body is not connected????? and not effected... or did he make up the answer because he had none... hmmmmmmmm

You have fybro..(sp) Have you ever had myofacial release? moyfacial pain effects the thin membrane between the skin and the muscles and tendons etc.. I think I am describing it right... If you go to an osteo perhaps she would recommend it... It does work.. I go to a pt who is a chiro and PT... and he does that... I finished in March but have to go back again now... I am only allowed 30 visits a year.. duh...

Also if you have a local business hotel... many of them have under-used pools and allow local people to join... usually these pools are very clean and have hot tubs... if you join one use the hot tub with out jets on and stretch and exercise your arm in their... it is sooo good....

well off to the rest of my Christmas stuff... I am so behind this year... did not mail my cards... no wrapping yet... yikes... one week!!!!! ... I think I better hussel...
take care
Kath

I recieved my TBPI on February 27, 2000. I have no memories from February through June of that time in my life so I need to rely on friends, my children, and medical bills to piece back together my life. Friends have said from two weeks after the wreck onwards the doctors were saying my arm was in my head. They told friends that they had to keep acting like nothing was wrong. So my original OT actually believed the idiot doctors and in the end probably injuried my arm worse than it was after the accident. Reading the few pieces of her notes I have been able to get makes you unsure whether to cry or laugh. Friends stopped believing the doctors when my arm just did not come around after about two months and then tried to be advocates. It would take until August before I was diagnosed with a bpi out of a medical book the extent of his treatment was a nerve block which confirmed the bpi and what he thought was a slight case of horners. I thought I was going to die after that injection!

About six months ago I started piecing my life back together. I do not have a "medical chart". What I have been given looks like a two year old attacked it with scotch tape, markers, and a scissors. I have medical bills that show I had MRI scans of my head, shoulder, and arm but the doctor's office says no such scans were ever done. Until I found this message board I thought I was the only one in the world with this injury. The only information I could find on it was under rare dieses and even that does not help.

The hardest part of all this has been the guilt I feel when it comes to my children. My oldest two vividly remember thinking I was going to die. My oldest is nine and refuses to go the doctor because he is scared they will do to him what they did to Mom. It took sixteen hours before I could get him to go to the clinic after he split his chin open! The doctors accused me of not caring!

I have a lot of weird things happen since the wreck in regards to my health that no one can explain. It is nice to read all of the postings because some of those things are now answered.

I guess I probably have written too much but I think there really is not very much differences between TBPI & OBPI when it comes to living and adjusting.