United Brachial Plexus Network, Inc.

Dear Mindy

How horrible for you... you would think the hospital and DR's office would have better record keeping skills...
I hope you can get some action on this as it is against the law to change medical records...

As for tbpi and obpi being the same ...it is not...

While the same part of the body is injured --many of the issues relating to emotional adjustment and physical recovery are much different... Even the family dynamics of tbpi and obpi are different…

Obpi often creates sibling rivalry that would never be there if it were not for this birth injury that takes up most of the parent's time. For the obpi family it is a daily demand for ROM, massage and constant reminders to use our injured arms and hands… Everything is about how to get us moving if possible… It is a lifetime of being constantly nagged to move and constantly told how to do things that we will never do. Parents must devote the majority of their time to the injured baby and therefore something has to give and it is usually the other children's needs… so they naturally have real problems with having a disabled baby in the house. Just to get our arms to function at any level makes unbelievable demands on family life…
Because this injury is malpractice the parents and family face the problem of getting proper medical advice for our injuries.

While adults understand and will possible support the accident victim. Everyone is afraid to give the child too much sympathy… so they give none…

While tbpi like you are new to the injury and have so much adjustment to do and your life is so drastically altered... Obpi were forced to adjust as babies... way before we had the maturity to cope with the daily frustration…. As children we were frustrated beyond our maturity and ability to cope and yet we did….
Obpi bring with them a life time of hiding this injury in order to get jobs. It is constant frustration because we were unable to do the normal things in life without thinking about it... and all of our life choices have had to be considered around our birth injury... including having our babies and how many and how close... what type of stove to buy... where to sit at a table not to bump the person on either side.... altering all of our clothing, how to keep some jerk from calling attention to our arms….. just to mention a few of the minor issues.... and the teasing from other children.... The inconsiderate remarks made by strangers to us all of our lives... ( I just had some jerk refer to me as one of those babies she had seen that was "deformed") We lost grades in school because we could not physically do what they asked us to... the inability to choose our dominate hands... the loss of our good arms while we are very young.... all of that started the day we were born as we were being delivered... no one spoke about it to us... so we would move on... and our families were led to believe that they should be thankful we survived birth…

It is not the same. We never had the normal function... we only wished for it...

You have the sudden shock and life altering... You need the healing and support of others who have had such a sudden loss who understand how it feels to lose something you have taken for granted... combing your hair... moving freely....


Our lives were never normal. Our families devoted all their time and energy to get us to move. They did not understand the learning disabilities this created... they did not realize how cold our arms were and the doctors denied us our pain... they pretended we were not severely injured... this is so much harder on a child challenged beyond their maturity to comprehend....

Now we are adults/obpi and realize all the many compensations and adjustments we have had to make because of this injury. For those who just found this board, it is the first time they are asking questions about things that have effected us our entire life. It is the first time to ask questions about concerns that normal people never had and to feel safe asking among the bpi community. Many of us thought we were clumsy. We all seemed to think that our inability to remember to put things down was forgetfulness. An when someone had the courage to post what seemed like a silly question on this board we discovered, we all hold objects in our hands without being aware.

Because we shared all of our information may obpi are beginning the process that most tbpi go through after their accidents...
It is a grieving process... when we learned that this is a preventable injury and the extent of our injuries we also begin to go through stages of grief for all the losses this injury inflicted on our lives. We are delayed with this grief process and sometimes do not even recognize it because we adapted to our limitations so well and coped so well… So some like me never entered that stage until I could no longer work because of the damage to the unaffected arm caused by a life time of compensations… Some find this site younger and most in their 40, 50 & 60… and that is when the process begins for us… We have delayed and denied grief…. As we acquire more information we begin to feel, what we were never allowed to feel as children... and its OK as long as we don't get stuck in any one stage.... It is also healing.

I never heard of bpi before I found the board we were only given the name Erb's Palsy... and I never knew that anyone could get this any other way then birth...

I can see where you think we are alike and we are all injured... Our injuries are just much older and because of it many of us are faced with overuse arm syndrome that starts possibly in our twenties. As many of us have sever back problems starting in our late teens and we have had no support from the medical community because they do not have any information complied on long term bpi... I think if they studied the obpi population they could prevent some of the secondary injuries that come with long term bpi ... either obpi or tbpi... maybe one day they will do it now that we have these message boards...

I hope the above give you some insight into obpi since you are new to the boards and probably have never seen anyone with this birth injury. A few years ago we did some posts on the difference and I guess its time to post it again….
I hope you can get some of the mess of your medical records straightened out and of course I hope your memory fully returns... and you have good recovery...

Kath

there are lots of similarities between tbpi and obpi mindy, until i found this board i never realised that the problems i had with my whole right side from earache, sorethroat on right side only, right leg problems, right side back problems, etc etc were probably related to the bpi. the doctors diagnosed me straight away (that must have been awful being told it was in your head-we've said this before but WHY is it that docs over there seem not to know about bpi? the horners in itself is a great big indicator, even the nurses on the ward knew i was bpi because of it?) which at least made me aware of why my arm wasn't working, but to this day noone has ever told me about the hot/cold stuff on the arm, the phantom pain, the low muscle tone elsewhere-i could go on (and on and on!) i just knew i had a bpi which was not likely to improve from surgery, thank you, go home and live with it, end of story, nothing more. despite the similarities every individual bpi is different depending on the severity and how long it's been there-some of us can move the arm and even hand, some of us can't, depending which nerves were damaged. the biggest differences seem not to be the physical ones but as Kath says, the emotional stuff, growing up and going through school/teens with a bpi together with the parents trauma and often feelings of guilt-kath describes all this in detail and you can see that those issues are quite different from the sudden shock of a tbpi for both the sufferer and of course their families. but i learnt everything i know about life with bpi apart from the technical stuff from talking to other adults with bpi, both tbpi and obpi, we have a lot to offer each other in that way. if an obpi person posts a question that you feel you can help with, don't hold back from answering just because you are tbpi, everyone's experiences help so much. as a newly injured person you are going through the same discovery process as many obpi who have only just found out what is wrong with them, you know better than me how that feels. keep your chin up, lass!

Mindy I was just reading ...
I hope you did not misunderstand my intention....
It was intended to describe how obpi live and are....
Since you are tbpi you know about your injuries.
I am pretty sure that you never met anyone injured with obpi… (since it took me 60 years to)
I am sure that you did not know how we move and maneuver with partial use of our arms…
So I thought I would share it with you so that we can all help each other.
It is wise to know what each person goes through with their injuries...
no matter how they got them....
OBPI are much different because the body on one side never matures and many of our muscles are wasted by the time we grow up to be in our early twenties….so much atrophy before maturity so our bodies appear different…
While some tbpi will recover as I have seen from reading the boards….
OBPI adults won't and obpi now because they are so long term are starting to become bilateral bpi injured suffering from 30,40,50,&60 years of overuse… many are loosing the use of the uninjured arms…
After a number of years being bpi one begins to find that the uninjured arm is in worse shape then the injured arm and this cause more problems… It is caused by compensation… you must be careful not to overuse the healthy arm….
OBPI just get this sooner because we are birth injured….

The surgery they do is amazing… as for the hospital you went to was it a city hospital? Perhaps you need to see a specialist… in one of the city hospital…many city hospitals have great trauma units… I know Bellview in NY & Lenox Hill helped one tbpi who posted and his injury was 20 years ago. Perhaps you will recover with proper medical attention.
I was also given great help 60 years ago at New York Hospital… they were so far ahead of the times there.

Just want to share our difference to help you understand some of the questions obpi post.... It really does help when answering a question to know where the person is coming from and the experiences....
Sudden bpi has one experience... Obpi had different.... But it still is bpi....
So feel free as jenny said to answer any question....
There was no attempt on my part to stifle you.
Kath

When I wrote earlier I was referring to the emotional and social issues we face as ADULTS. I know first hand what it feels like to have to "hide" your hand to get a job and what it feels like to be fired for not disclosing your injury. I have moved five times this year alone trying to keep my families head above water. I have never even seen anyone who has an injury close to mine. Everyday I am faced with someone in public who... To be honest there are days I would rather stay in my house then face the world. I do not get that choice though... I am an only child who has already lost both parents to cancer before they were even forty. I have no support network... I am battling an injury that took away everything except my children. My OT is 80 miles from my home and it took over a year to find her. I only see her when I can afford too. She is a specialist in upper extremity injuries and has never seen this type of injury so we both are searching in this vast medical world trying to figure out what is going to happen next...

As for medical care I live in Minnesota in the United States where we have the worst medical care options you have ever seen. I am four hours south of the Canadian bourder if you look at a map you will get a good idea of where I am at. It is cheap living here and I thank God for that every day but the trade off is horrific medical care. The doctors we have are not stupid. For the most part they have all faced a medical mal practice lawsuit so now when they know they have screwed up they destroy your medical records. I spoke with a lawyer who told me all this and told me I am lucky I wasn't more seriously hurt. Like losing my dominant hand was a walk in the park.

I know OBPI injuries are vastly different from TBPI injuries and that OBPI have lived with this all their lives. But TBPI injuries make you start at square zero! To be perfectly blunt I know I have never grieved because I don't have time. I am too busy trying to survive.

As far as continued health care goes after reading and searching I know that is never going to be an option! Someone on one of the boards said it cost something like $40,000 just for the surgery and hospital stay. Where I live that is almost three years salary before taxes! I am a single Mother and know I will never be able to save up this kind of money.

I am sorry if I offended anyone with an OBPI but some of the emotions you have felt I have also felt.

oh yes there are diferences, at the 2000 FLA picnic i attended i never saw one flail OBPI, yet i was the only TBPI could move his arm at ALL- John, Walter and Ryan had zero arm use- the physical injuries received by TBPI are generally VERY severe, i broke my neck,back and shoulder and had my tendon torn off my humerus, it is not called traumatic injury for nothing.
I am tired of hearing folks who don't walk in TBPI shoes make comments on areas they are not qualified to do so, i will not let these comments slide unchallenged any more. It is offensive in the extreme to assume you know anything what it is like to have your life torn apart in front of your eyes then have to go slowly put it back together again, to go from being in charge of your life to helpless IS a big deal. i am saying this in defence of my friends too who may be more polite than me, if i sound pissed off you got it right on the button, i am.
Peace all

FYI dave:

Just because YOU never saw an OBPI with flail arms...does not mean they do not exist!!!!!!!!!!! I have met a few... also their arms remain small when they grow up... try that on...!!!!! or the babies with bilaterial bpi....

And if you think for one minute our lives were not torn apart...... you have another guess coming......

As for being insulted about others not in tbpi shoes answering..... well that is a two way street...
....
information.... sharing is a good thing... this board is for ALL bpi injured.... and our issues are just as serious to us as yours are to you.... make no mistake about it....

As for being polite I tried that and you chewed me out.... now that is rude!!!! and I take offense at your statements....

what makes you think that bpi is so terrible for someone in and accident and not for a baby?????????????? or a small child..... or for obpi who will loosing our unaffected arms...and are starting to already... Do you thin our world was not crushed

What is wrong with explaining this to a new person on the board who has no frame of reference.... and since I have met tons of obpi children... and a few tbpi... I am keenly aware of the difference...

but made no judgement as to who has it harder....

I have often posted on this board the following:
"The hardest injury is the one you live with day to day"

Because you sustained other injuries in an accident does not diminish the suffering of a child or teenager or young adult who is now in danger of becoming bilateral bpi...... this is a real and present danger for long term bpi..... and with sharing of knowledge it may help....

I have never tried to tell a tbpi how to handle the emotional aspects of sudden trauma.....

I would only speak of our OBPI issues... and give emotional encouragement to tbpi.... but many times on this board I have seen obpi issues.... answered by those who have no concept of where we come from and what we have faced in our entire life with bpi....

It may appear like nothing to you because you feel your suffering was worse.... but trust me.... not so.........

One can not wear the jacket of the other... but one should respect the feeling of the other and I am not seeing that in these posts... especially yours....
Kath

kath, the only person who EVER makes comments about the injuries of others is you....i have said over and over i can't possibly understand what it is to be obpi but you don't let your lack of knowledge about tbpi stop you making insensetive comments that, yes, cause offence. fyi, my arm is at least 3 inches shorter thru contractures and unlike any obpi i have seen mine is also completely lacking in muscle-the lower arm is just bone covered in skin....so please don't tell any other injured person to TRY THAT ON it's rude and offensive-i read your comments about ignorant people making uninformed comments about your arm then see you doing exactly the same thing about other injured people-i don't comment on your arm, please in future refrain from making stupid comments about tbpi or even obpi. you are an individual as are we all, you are an expert on bpi, but only your own. i hope this thread will finally stop these offensive comments.

bfore anyone jumps all over me saying some obpi have the same stick arm as me-I KNOW! my point is, and always has been, bpi are bpi, we all have different issues, i would never minimise what effect any individuals bpi has on their life and i would appreciate it if others had the same respect for me. whether you like it or not, comments made in this thread and others about tbpi have offended at least 3 people-i'm sure it was unintenional but the fact remains they were insensetive in the extreme. a newbie logging on here would undoubtedly be put off by reading those comments, i am a long termer and i was quite upset yesterday as i was by the earlier thread in which i learnt that apparently i (and the other tbpi) had got over the injury better than an obpi because i had defined my body boundaries and had a mature arm before the accident....what??? and there was me thinking it was because i had survived a serious accident when my brother didn't....to me losing an arm was nothing compared to death-that one not only offended but made me cry too. i just hope the tbpi who got her injury at the age of 13 in a smash where she also lost her whole family wasn't reading-she never posts any more, wonder why? but i decided to sleep on it, i get up and find MORE of the same! shall we stick to talking about what we know about instead of uninformed generalisations please? noone here tries to say their injury is worse than anyone else's, noone can possibly say that and i'm tired of reading about the differences when it would be more productive to focus on the similarities, and certainly more supportive. if anyone doesn't like what i say, think how angry you feel when someone who doesn't know what they are talking about comments on your arm and try to understand-i make no apology for stating my feelings about this. i am angry and upset. jenny nz

jenny you started...and now its ended.... you always jump in to make comments and defend when no defense is needed....

and fyi ... the comment was directed to dave...for his insensitive comments....
you always seem to think that you should jump in and say whatever you please even if it insults...
but no one should insult you......
as for thin frail arm ...
mine has always been there..... three inches or more shorter always...and also loosing the unaffected arm...so.... how many obpi's have you seen...at least I have met three tbpi.... and hundreds of obpi...children of all ages.. and all degrees of injury....besides being one myself.... just so you know my frame of reference....

as for my comments...they were not directed to the ones you made !!!!! although I did read between the lines.....
but to dave being pissed off...... and his very insensitive remarks and comparisons...in a very nasty way.... AND THEY WERE INCORRECT ABOUT BABIES AND FLAIL ARMS...AND THE ADULT OBPI WITH FLAIL ARM HAS A BABIES ARM ATTACHED TO HIS/HER BODY......

Now let me understand you properly...

if I read you right --you-- can say whatever ---and insult also make all sort of remarks - snide and otherwise about our medical professional here in the states and no one should be insulted...
your not so subtle comments on the states no knowing about bpi..... still taking pokes at US..but now one should make any negative or percieved negative remarks about your medical care...hmmmmmmm sound a bit one sided .....

Also let me be clear on what I am reading from your posts...... YOU HAVE SEEN OBPI... AND
If obpi post and we give them support or try to explain to a newbie about the difference as we know them...that instead of being kind....you will jump in and get DEFENSIVE AND insulted where none was intended!!! AND personally directed to you..... but if you might percieve one you feel free to say what you think.... but no one else should!!!

Jenny can speak her mind --even if she insults and hurts others...but no one can stand up to her....... just want to clarify..your statements.....

did you ever think sometimes before you post...that some statement of yours are beyond rude.... well since you felt you could tell me off on the board... I will answer you ... sometimes you are very insensitive.....and hyper-sensitive to anything you percieve as out of line... AND CREATE INSULT WHERE NONE WAS EVER INTENDED....even if the posts are not directed to you.....and think only you can say what you want and take insult where you please with out being answered...............

If I had wanted to post to you I would have...but I did not until you jumped in to tell me to end the thread because you did not like it!!!!!!....

obpi should not stand up and post their issues thats what is sounds like you are saying......

Now I know where all the obpi have gone!!!!!

So this conversation is now ended.....

because I read you think my comments are stupid...and when did I make make comments on someones arm??? some how I missed that thread... OH... I know I answered daves rude post about obpi..and tbpi.... and no flail armed babies comment...
I was not speaking to you... but as usual you felt it was up to you to jump on me......I see... how typical.....of you

Tune in tomorrow campers,for round 2....dingding....
OH DEAR!!!!!!!!!!!! # 8-(