United Brachial Plexus Network, Inc.

it's not that the post polio syndrome is the same as long term bpi, any more than any 2 of us have the same issues. It's that anything which affects joints, causes muscle wastage and imbalances and affects the nerve supply (such as polio or bpi or a stroke) will get worse over time, this isn't rocket science but sadly unless medics get their noses pushed into it, they pretend it's not there because they can't find a peer reviewed survey saying so-how they can ignore the symptoms of patients sitting in front of them is beyond me. Post polio victims often have (among other things) scoliosis, joint degradation, early onset arthritis and gradual loss of use of unaffected limbs....sound familiar? Until the post polio victims got loud about this, everyone told them what your doctor's telling you-'The damage is static, it doesn't get worse' which we all know is rubbish.
When I got my bpi in 1980 I was told by my specialist that I would get arthritis early, and would probably have scoliosis and joint problems from compensation. He was basing this on the surveys Stanmore Hospital in London have carried out since WW2 on tbpi. If my doc knew this 22 yrs ago, how can there be any dispute that these things are happening to us now? obpi and tbpi are different, sure, but the issues facing us all are only different in when they affect us and how badly, surely the fact that they DO affect us is a given?

First of all I would like to second everything Jenny said... She put some of my thought on paper... Jenny proves the point I wanted to make in my post that at least 20 years after this injury - secondary injury and compensation takes a big toll on our body...

Jenny is tbpi I am obpi but we both have overuse and secondary injuries that come from years of compensation... tbpi must first deal with the onset of extreme pain then loss and then compensation and now after adjusting they must deal with overuse and secondary injuries so they are fully aware of the impact long term effects of bpi injury... and they fully understand the issues of overuse and pain. I only hope that someday in the future medicine will find a way to prevent over use in the tbpi and to prevent OBPI ... by proper birthing methods... and education... In the meantime those of us who are bpi are forced to prove to society that when we begin to complain it is not because we want to complain but because our body is failing us.... Thanks jen for telling it like it is...

Now on to the post it took me so long to get together due to the secondary injury I have to deal with...

I have read your website and I am not sure if you testify on behalf of doctors or the person who is injured ... as this is a law firm... If you are researching for a friend please ask them to post or they can e-mail me and I will be happy to help them with support and encouragement. As you can tell by the posts on these message boards we recieve and give support to people from all over the world and share information in the hopes that both tbpi and obpi will benifit and we learn from each other.

This is my reply to your questions I use my own personal experience with OBPI and also information I have aquired over past three years...

Dr.Brooks

I read your post with interest this morning but was unable to answer due to the secondary injuries typing for any period of time is no longer possible. So I went to some of the posts I have saved over the past three years and cut and pasted them together for you...

I am always amazed when someone writes reasonable recovery...

What is reasonable recovery... 75% function?
What test is given to determine that much recovery?
First reasonable recovery - Who determines what a reasonable recovery is? I was supposed to be born with two 100% functioning arms - instead I was paralyzed for the first year of my life and then forced to do PT for the rest of my life to function at an almost normal....


What is almost normal? It means to me the following:

My Right Arm – Obstetrical Brachial Plexus Injured is approximately 3” shorter then the left arm
My hand is also a little smaller and my circulation is poor. I also have scapular winging and
One eye smaller and a crooked smile - Horner’s syndrome at birth T-1 injury is the cause.
Limits imposed by this injury for my entire life.
I cannot supinate (turn my hand palm up...either extended up)
I do not have a full range of motion- cannot lift arm up over head.
I cannot put my hand on my face unless I lift it with my left hand.
I cannot put my hand up to my neck or the top of my head
I cannot put my hand behind my back at the waist or any higher
I have never been able to feed myself with the right arm.
I cannot brush my teeth
I cannot comb or brush my hair...to blow it dry I have help or a wall to lift the right hand and place it on the wall and put the dryer in that hand - this action causes many spasms in right arm it always has but it is much worse now... so I now have to seek assistance with drying my hair from my husband. I cannot use a spoon or fork in the right hand even lifting with other hand because of inability to supinate and to control hand that is lifted from the shoulder. I cannot get my hand to my mouth or eyes to take off glasses or put in contacts because there is no real control of my hand and the wrist... and elbow…
Lifting anything using my right arm is difficult. I lift my arm from the shoulder.
This constant lifting with my shoulder has caused a great deal of damage to my rotator cuff...
I cannot carry anything anymore with this arm and the left one is very weak... I could never carry even a cup with the right arm because I could not hold on to the handle with my hand.

I have had pain most of my life and until I took a medication for pain relief a few years ago for the first time I did not realize how much pain I was in… for me that was normal to be uncomfortable. I never complained of pain because my parents and I were told there is no pain with obpi… That is not true! Harvard study shows how wrong the medical profession was about the pain a baby feels. If adults who are tbpi share information on this subject they can describe the horrible pain they suffer… It makes no difference if you get this injury as an adult or child it is still trauma and of course causes pain. Often time’s parents are told they have a fussy baby… What it really is that the baby is in pain and has no words to describe it… After a while the child adjusts to having pain as part of their normal… and occasionally complaining of stronger pain especially during growth spurts and sickness.

I think this is enough until I wrote this information down I never realized how long the list of things I cannot do is. Therefore, I will not continue but if there is any question I will answer them.


Left Arm
For the last several years this arm has been more and more damaged. I wake up at night because of the constant stinging and burning sensation. I have am not sure of any severe nerve damage in this arm yet! I have a neuroma on the left wrist but it will not be operated on unless it become a major problem… (Because I would be putting the only arm I have in grave danger and if I had surgery and it failed I would then be with out any independence) I have had ulna discomfort and shoulder discomfort to the point that it has been suggested that I seek the advice of an Orthopedist to see if a Cortisone Shot in the shoulder would possibly relieve the inflammation and reduce pain and stinging... I have been seeking help with this arm for approximately 8/9 years and it seems to be getting weaker and weaker and not really improving. I have been in PT for most of the last three years and also used alternative medicine ie, massage therapy, chiropractor, I have been treated for the pain in both arms and shoulder and neck. (I have arthritis in the neck and from what I have been able to investigate this is also caused by this brachial plexus injury since the baby’s neck is hyper-extended during the birthing process) I also believe that many of the problems with this arm is caused by my need to compensate for the loss of my right arm and of course over use and I guess it was not really preventable since my right arm has been for the most part non functional and unable to assist. Therefore, I was forced to compensate. This compensation keeps my neck and shoulders and back tight and uncomfortable causing backaches as well as the already compromised arms. Atrophy in the muscles keep them from supporting my neck and spine to keep my body straight… this is then accomplished by forcing the unaffected side of my body to support both sides.
Many of these aforementioned things have really caused me to alter my quality of life over the last several years. I truly believed, if I kept busy, I could work past the pain and it would eventually return to what is my normal. But I was wrong and now have to readjust my thinking and preserve what use I have of my right and left arms in order to preserve my independence and dignity. I have severe osteo arthritis in both hands but mostly in the “unaffected hand” The orthopedist has told me that he will replace my knuckles when I have lost all quality of life because it is risky since this is my “good” arm and the one I need for personal care and function. I do not have arthritis in my wrists or shoulders this is strictly caused by wear and tear.

From my point of view it is not what anyone living with obpi would think is reasonable recovery. This is a birth injury and is preventable and often time dismissed as only an arm and often time people are told how lucky they were and how others are worse off… of course this depends on your point of view… If you are the injured party or if you are the party who caused the injury.

What is weakness and reduced range of motion in the non-dominant arm?

NON-dominant arm... this has caused many a long post on these message boards... I am "left" handed but not really I write with my bpi hand... but was I suppose to be left handed or right handed? It was assumed that I was only left handed because I am right obpi so I was forced to write my right hand (such a painful task for me - since I lack some feeling in my right bpi hand and had to squeezed the pencil to death to feel it) Any task requiring me to lift my hand above my midline is preformed by my left hand… Does that mean I am naturally left handed? Can you test a bpi baby by the way they walk? NO... because the bpi side of our body is weakened the initial damage starts at the spinal column... My entire right side is weaker and smaller... can you tell which one of my eyes is dominant? How can you if T1 is injured and lazy eye occurs or goes untreated... can you use the tube to the eye test? Not really because a child will almost always pick up anything with the unaffected hand because we have been disconnected at birth and often forget we have another arm... unless reminded to use it... Many will not even break a fall because we have been robbed of the ability to naturally put our arms out to protect ourselves and break the fall... many of us are unaware of where the bpi arm is at time due to a lack of body boundary... So no one knows for sure if a bpi baby or adult has lost the dominant arm hand... or NOT because we are forced to use the only hand that moves… It is impossible to tell which is the dominate hand after this severe birth injury because of the neurological disconnect from the brain to the arm hand...
I have met babies with mild injuries and they have sensory integration issues. Lucky for these babies their parents are well educated and are aware that something was wrong and they investigated… Due to sensory integration issues many parents report that their children are super active or hyper… of course we have not even touched on the frustration level of both the babies and even adults experience when faced with many normal activities ( or what society deems normal) we are challenged just to do the ordinary… obpi have approach all new events and stop to study to see how they can perform certain ordinary tasks… As secondary injuries take over our bodies we cannot compensate for the loss of bpi arm…

This question required much thought because we are on a message board with many young parents who are dealing with a life long injury and sometimes if we are too honest here we scare the parents and I would not want to do that…

I will tell you what I have learned because I am one of the oldest obpi babies posting on this board. This injury requires a life time of adjustments and compensation. I am paying the price for overuse now and the "healthy side of my body is worn out .
Because I did not realize that I was overusing my “good left arm” I now find my self dependent on the obpi arm…

I have had doctors tell me over the years how "good I look and how mild my Erb's Palsy must have been"... My family doctor told me as a child and as a young adult that - the doctor caused this injury and also I had a very sever birth injury... yet when consulting with some so called experts I was told how "lucky" I was and how one could hardly notice. I gave up asking questions until I could not cope with pain and loss of my "unaffected" arm... my so called reasonable recovery was not working... and I realized that most doctors have never treated anyone with this injury. I began to ask "how many others have you treated" Thanks to the internet and sites like this I was able to compare notes with other OBPI/tbpi adults and also gain access to competent medical information regarding this injury.
On of my recent emg on right obpi arm – the tests revealed the following
List of those chronic denervation muscles.
First Dorsal Interosseous Ulna Nerve c-8 T1
Extensor Digitorum Communis Radial Nerve C7-C8
Flexor Carpi Ulnaris - Ulnar Nerve C8-T1
Flexor Carpi Radialis - Median Nerve C6-C7
Brachio-Radialis - Radial Nerve C5-C6
Deltoid - Axillary Nerve C5-C6
Biceps Brachii Musculocutaneous Nerve C5-C6
Needle EMG testing of the right upper extremity reveals evidence of chronic denervation of selected muscles as indicated above.

Because many of us are able to hide from society the fact that we are disable it is assumed that it is only an arm... I will not go into the pain issues and the long term emotional issues of adjusting every thing we do... I have often approached things assuming I could do them only to realize that some things are impossible - even simple thing like a buffet or dinner seating and service each require the use of two hands. The human body was designed with two healthy arms that work in unison and help to keep the head and neck straight and to keep our body in balance. When we loose function due to BPI we not only loose full use of our arms but all our muscles that support the function of the arm spine neck scapular fingers etc. and we are off balance…Because no one can say for sure how obpi effects our rate of growth it is not possible to predict how much a childs body will be effected in the future by this injury. I believe that weight bearing releases a hormone that helps with bone growth but if the arm does not function and if weight bearing is impossible who can say for sure what the result will be… Because our arms are shorter the unaffected arm is restricted in regard to its range of motion. The unaffected arm become tight because it is never fully stretched it must always keep pace with the lack of range on the bpi side .

Drawing blood and blood pressure... Since our arms are injured at birth... we are mapped differently and the veins filter through assorted scar tissues... and feed the muscles... circulation is poor... veins are small and our hands and arms are shorter... we must be careful of either blowing a vein on that arm or getting infections ... some get burns because there are some parts of their arms that do not feel heat... as for me I do not sweat on that side... also my face neck and arm will feel cold all the time and can NEVER use a cold pack... I have been burned because hot does not feel hot and I have hurt myself on that arm side and was not aware I was cut because I cannot feel it... I had to take care when feeding my babies… I kept testing the milk on the right forearm I was not aware that the formula was too hot and that I could not really feel the heat… so I compensated and began to taste the formula ugh soy stinks!!! I was told I could not nurse my babies it would be to hard… … I guess they thought I could not but they did not explain…Feeding my children was a big deal… sitting on a chair with my leg holding my arm up and the baby in the crook of the bpi arm because I could only hold the bottle in my left unaffected arm… I did this but my children noted when I feed their children how I automatically adjusted my sitting position to compensate for the loss of full use of my arm… sitting such a position compromises our spines and back and neck muscles again… they are supporting our entire body due to muscle loss on the right bpi side.

The unaffected left arm... it is now so painful all the time... I have just finished 30 PT visits and am no longer covered by insurance so I must pay on my own... Taking blood from my left arm is so painful!!! My arm is full of scar tissue because for my entire life all blood tests have been taken on the left... I hate my blood pressure taken on that side... I have severe osteoarthritis on the left hand and three fingers of the right obpi hand my ring an pinkie on the right obpi are week so did not take to the wear and tear... I have no arthritis in my wrists or shoulder just in my hands and live with a very, very large extended family... I am the only one with osteoarthritis...neither parent had it... overuse.....

I had to retire long before I wanted to, I find it hard to help with normal things now... I cannot use my unaffected arm to carry bundles or babies or packages from the store... After years of denying I was disabled I have had to get a handicap parking and make sure that I have someone with me when I shop to carry any thing over ten pounds.

If this is reasonable recovery or great recovery let me know... I am not finding it fun to pay for someone else's mistakes the second time around. I am upset and frustrated that I did not get better medical advice from experts on how to preserve the use of my "unaffected" arm... Because I functioned as a productive member of society I had to prove I was disabled to retire as if this was a new injury to me. I will have to fight with medical insurance to get the proper PT needed to maintain as much use as I have now…


I often read on websites that many recover... if its not 100% recovery it is not recovery... because in the end after years of compensation just to sit straight there is a very real effect on the opposite side of the body and one that I am really paying the price for now...

Physical Therapy will be on going, as this condition will not improve but it can be maintained with proper care.
When you can only use one arm for ordinary life functions your arm is overused at about 20 and progresses downward after that depending on your life circumstances and the medical care you receive and the advice you get... Mothering took a toll on my arms - housework - gardening- all of the things I love and others take for granted or has no interest or desire to do... I learned to operate a potter’s wheel a few years ago it was my hearts desire. I can no longer use it because of the secondary injuries to my arms neck hands and shoulders… that really has cause me a great emotional loss… I am still hopeful so I have not sold my equipment but it has not been used for over a year due to the loss of my “unaffected arm”…
The emotional tolls are great on any family... and on any child/adult both tbpi and obpi dealing with this injury.... Your brain tell you something is great and you want to do it... but your body will not cooperate with your hearts desire....

Loosing the use of one’s unaffected arm is like living our worst nightmare… while many have never stated their fears most will admit that the thought of their unaffected strong healthy arm becoming weak or being injured is the hardest to face. It is the arm that has enabled us to function in a society that deems us reasonably recovered… But does not understand the full impact of this injury on the infants and growing child’s body and emotions… Or in the case of adult/obpi/tbpi the normal aging process.
What is the normal aging process…??? No one knows for sure it depends on our genetics and our life style… except in the case of a bpi… that is when we once again pay a high price for this injury. Even with good genes and healthy life styles we will still suffer from over use and compensation issues that create Secondary Injuries.

Test for reasonable recovery:
I suggest the following test...for a non bpi person… try it for at least a week.

Have your wrist taped in the pronated position with Kinesco tape.... it will prevent you from supinating..
Tie a cord to your belt loop restricting your range of motion. Try to do all of the ordinary health care and work functions for a day or week… you will soon see how the loss of use of one arm affects your entire body…
I think this is a good experiment for all those who are responsible for caring for a bpi injured person… it would really help to understand how a person copes… also when dealing with children you must realize that children are forced to cope with frustration on a minute to minute day to day level way before they have the maturity to understand…or the coping skills that come with maturity.

I am obpi and 63 it took me 60 years of research to find the information I needed on this not so rare birth injury and then the last three years to gain the knowledge I needed to get proper medical care for this injury...

If your friend has any questions please feel free to e-mail me.
I hope I have helped give you some insight on what it is like to live long term with bpi injury... and Jenny has really helped by confirming that 20 years of overcompensation and overuse creates different needs in our lives and also more complications as those needs become ones that require help.

This message has taken all day to complete becuase of secondary injury but a few years ago I could have typed this in no time flat... again another adjustment. I can still type but cannot sit and type for long periods of time without pain...and frequent breaks away ... cut and past and saving old notes helps...

Kath

I hope I'm not too late to put my two cents worth in. First of all I wish I could have taken all your responses to the SSD judge last week. I certainly would have submitted them.

One more point to cover that I have run into is: Depression. All I hear is your depression is not that severe. Which is fine, but then they go on to say that because of the depression I tend to over emphsize my pain. NONSENSE and NOT TRUE. The emotional depression is caused from the pain and not the pain due to the depression. I've even had a theapist tell me had it not been for my physical pain and limiations, she doubts that I would have sought help. I wish they could realize that, at least for me, I need need help to adjust to this way of life. After you have done just about all you can do and you finally come to terms with the fact that gee, I really can't do this or that anymore and gee, it's really hard and really hurts to compensate anymore. But how can they when they really have no idea how we have to live.

Anyway great posts guys... I guess we do what we can.

Sharon 55 yr left obpi

Happy New Year

Sharon,
The rules off Social Security-their wording says limited range of motion in both upper extremities. That is--Erb's in one arm,arthritis in the other--getX-rays to substantiate it. If it shows joint space narrowing in the unaffected fingers-you can argue with their own rules. We all know that it is impossible to work an 8 hour day 40 hour week. I went back to work part time and by the end of the week--I wasn't sleeping because of arm and shoulder pain-- my neck had muscle spasms--both arms went to sleep and stayed that way-they felt like great lumps of concrete. It took me the rest of the month to feel better.One week a month is all I'm going to try and that is due to a need for money because medicare doesn't pay for prescriptions and certain family members guilting me into feeling lazy and worthless. Now, I know that shouldn't matter, but sometimes I feel so worthless--I guess to look at me I do look pretty healthy. Noone seems to understand that every hour of every day-I hurt-- it hurts to put a coat on--to turn my head ,to drive,to sleep. So what is the answer? To sit around and feel sorry for myself or to feel like I'm contributing something monetarily. I don't know. I try to take life day by day. I vacilate between telling the world to go t hell and conforming to what others think I should do. For example--scooping ice cream-- I dared this summer to say " I can't" and got oh, I forgot and then the look. You know the one? The " you are just too lazy to do it and are trying to get sympathy." I feel like I have to have both arms chopped off at the shoulder before anyone will realize that these arms,shoulders and hands HURT!!!! Sorry for being so negative. Maybe it's the holiday blahs, but awt this point I feel so overwhelmed by these arms, I want to scream. Am I alone??? Thanks for listening. Pat

My son probably has about 75% recovery. We just discovered that he has been in a lot of pain. Also, something that I haven't noticed mentioned yet is Scoliosis due to over-dominance of the unaffected side. Also, many BPI patients suffer from Horner's which affect sweat glands, and numerous other problems of the face. Caleb falls all the time. He has no rescue reflex. He has chipped front teeth. His lips are scarred and he always has bruises on his arms and legs. He has trouble eating and drinking, possibly due to the Horner's. He can't pull his pants down properly to learn to potty train yet. I am aware that you are speaking of an adult, but these are only a few things that our children will struggle with their entire lives. Just wanted to add my 2 cents in. Caleb has had one surgery and will possibly have one more. He will always be in danger of contractures reforming in the surgical areas that will require further releases. There will always be danger of malformation and dislocation. Caleb's arm is 2 inches shorter than the other. I have to sew or roll up his sleeve on that side so that he can have some use of that hand when he wears long sleeves. My son is only 2 years old and is already in pain. As an Anderson/Classen his expected life span will be 88-98 more years. You do the math.

Kari
http://www.calebsjourney.anderson-clan.org

Pat, your doctor said that to you? I can't believe that. No wait, I can. I really am starting to distrust all doctor's unfortunately. They don't seem to truly see their patients as human. My sister-in-laws father has a BPI due to Polio. He has just recently began to lose the use of his "unaffected" arm due to overuse. Tell that to your doctor! Sheesh!

Kari

I'm 36yrs old, OBPI. It's hard to say if I have 75% use in my left arm, to me I have 100% use.
The only long term effect is severe ware and tare on the good arm.

Steve,
But if you had 100% use--where did the overuse come from????????? Do you have any functional loss? Ar your arms the same size? Can you supinate-straighten you elbow-and lift your arm over you head? Do you lift your arm? Or do you lift from the shoulder? Don't mind me . I'm just nosy and a right OBPI. Pat