Experimental surgery?
Re: Experimental surgery?
Nettie - Karen and I have had many conversations before about differences between UK and USA- I think she was fine with me saying this because there ARE many cultural differences - not only in our experiences but in the way we communicate. Karen DOES not know the USA experience and I do NOT know the UK experience. Of course parents are parents - but environment and culture play a big part in our experience and how we may react to certain things. We don't have socialized medicine here in the USA and Karen doesn't have to fight the insurance system - the legal system is different - all these things play a big role in how we make decisions, how we deal with things emotionally and how much stress is placed on us.
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EVERYBODY DOES THE BEST THEY CAN.
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Re: Experimental surgery?
For those of you who think "an arm is just an arm"...
Are you serious or is this a joke?
When my baby was born her arm injury made me a different person. Her "arm" made me a stronger person, it made me understand the word patience, it made me understand that most people out there take their "arms" and the use of their "arms" for granted. I WILL NEVER agree with an arm being just an arm. To me, it is ridiculous! I think if that were the case there would be no such place as here (UBPN) and most of us as parents would not need so much support. I understand that we are all different and so are our views, but this is something that doesnt make any sense to me as a parent and as a person. And in the future I will be proud to tell my daughter that her "arm" was something I wanted to get help for and I wanted to help give her her movement back. Although she can function with one arm if she had to, she doesnt have to and I know if she could choose using one arm or both arms she will tell me when she is older...thank you for helping me be able to use both of my arms.
Respectfully posted,
Krista
Are you serious or is this a joke?
When my baby was born her arm injury made me a different person. Her "arm" made me a stronger person, it made me understand the word patience, it made me understand that most people out there take their "arms" and the use of their "arms" for granted. I WILL NEVER agree with an arm being just an arm. To me, it is ridiculous! I think if that were the case there would be no such place as here (UBPN) and most of us as parents would not need so much support. I understand that we are all different and so are our views, but this is something that doesnt make any sense to me as a parent and as a person. And in the future I will be proud to tell my daughter that her "arm" was something I wanted to get help for and I wanted to help give her her movement back. Although she can function with one arm if she had to, she doesnt have to and I know if she could choose using one arm or both arms she will tell me when she is older...thank you for helping me be able to use both of my arms.
Respectfully posted,
Krista
Re: Experimental surgery?
Life is an experiment! We only get one and we play the game with the cards we are dealt...
I guess I will jump in and put my two cents... or sixty cents in...
This is a great thread it has been so interesting reading everyone's experiences and opinions and each person has made a point.
I am obpi I have never had surgery. In 1940 it was too risky and my mother declined. She did allow what was considered an experimental brace. She had to have it made and it was costly for that time. I was in what was called the traffic cop position similar to the statue of Liberty brace ( __! ) my arm went straight out from my shoulder and then up. It had steel and leather and velvet and it strapped my arm up. My arm was only taken down for exercise and massage and then back up again I wore it until I was 11 months old. Their was a boy on the next street who’s parents choose a different therapy a year later only massage and I think cast he never moved his arm. Does this mean my Mother was right and his mother wrong-- I don't think so I think each parent chooses to do what they felt was right and as a parent and now grandparent I have learned to trust my GUT.
I researched surgery in about 1972 and in my thirties I would not have risked it but I was told there was none. In my forties I would have taken any chance to be able to turn my palm up and to strengthen my arm. Now in my 60's I find that there is a surgery but I think the risk for me is too great because of the 62 years of overuse and wear and tear on my unaffected arm and hand. I cannot afford to risk possible loss of what use I have in my right arm. I was just recently x-rayed and the joint and finger problems I have are not connected to-- my age or the aging process. I do not have arthritis any where but in my hands and of course they are worst on the eight strong fingers and none on the ring and pinkie of my right obpi hand. Actually I am quite healthy except for the secondary injuries related to obpi. As most of you know the bpi side of our body is smaller and so are our arms, feet, breast, and hands and I had T1 injury so my right eye is smaller and part of my face is paralyzed. This does put us permanently a bit out of kilt. Because of the secondary injuries to my left hand and fingers I may need to have my joints replaced on my left hand so now the risk of surgery is too great for me. Had this surgery been available when I was younger my answer is YES. As I matured I realized that many of the normal life functions revolved around the ability to supinate and probably I would have had less wear and tear on the left side. remember I am 62 years into this injury and most certainly a long termer.
I look almost normal and it also takes a keen eye to notice. I functioned so highly in society that I had to prove I had a permanent injury when I tried to retire. I was one of the more severely injured babies. I learned very early in life how to position my self to hide my arm and not to bring attention to it. I developed a way of dressing and moving and sitting to bring the least attention to my arm. This became a way of life for me and I never thought much about my arm until the unaffected arm began to fail me about 10 years ago. That means at 52 years old it was the first time I really paid attention to my arm and needed more information.
I think the choice for surgery is so personal and so gut wrenching for any parent that it is hard not to be emotional about it.
I have had pain as long as I can remember but pain is also a personal issue. If you are always in pain and never knew what it felt like to be out of pain you don't complain about it. I now understand why doctors have said I have a very high pain threshold. Also children do not know how to describe pain and doctors often state “no pain with Erb's Palsy" as if they had it! So pain denied does not exist but, pain is a real part of our life even if we choose to deny it. I was just recently told, by a Neurologist that with Erb's Palsy there is no real pain for a child. He felt all the pain now was due to secondary injuries. Of course I now educate them that pain was always part of this injury its just children do not have the words. Every growth spurt caused something different for me then for my peer’s. I used to wonder why I had so much more difficulty doing things then my peers. I never blamed it on my arm or used my arm as an excuse but just wondered to my self why I always had to go to the doctor because I pulled something in my neck, arm, back and I was down for the count. This started for me in my late teens and after that I was given a pill every time my back went out. This never seemed to happen to any of my friends. I never realized that it was all related to my arm. I totally discounted my arm has having any effect on my neck legs and back, eyes, breathing... all the things that are connected to being obpi. And being young, strong and fiercely independent I never shared these feeling with anyone – not even my Mother and we were very close. Of course we had to be because she worked on me constantly even if I did not realize it.
I think our injuries are each so different that they are like fingerprints and therefore each one is an experiment. The way it affects us, the way we heal, the pain levels, the functions all of these things make each injury unique and individual.
I would love to see a long range study using all categories. Those of us who are older who never had surgery, the younger adult/obpi that has had surgery and then later on the children with and without surgery. This type of study would help in many ways. It could prevent future secondary injury to the unaffected arm. It could help with many of the life functions that cause secondary injury and perhaps prevent the children from some of the serious side-effects of untreated bpi injury. Many of the adult/obpi stopped therapy at very early ages and did not have instructions to take care of themselves we were told the one arm was strong enough to support us for life. Well, check with the adult/obpi – secondary injury and overuse is a reality and it begins at all different ages... So one thing I know for sure surgery or no surgery PT/OT and ROM is a lifetime commitment for those who are birth injured. I am not sure but I think that some tbpi many need to continue to do some form of therapy and learn to protect the unaffected arm. We have no long range study but we have adults who have lived with this injury for many years. I also wonder if this injury affects boys differently then girls and had different overall effect as adult/obpi???? This type of study could be done by questionnaires not by depriving or giving treatment – it would just study those of us who have lived with this injury for long term.
Karen I just read your posts. I am sure that Gavin in no way would think that you think less of him for his injury.
I really thought that I was just normal I was like any of the other children in my family. I never once thought that my arm made any difference.
I thought my arm was something that just happened when I was a baby I did not know it had life long effects. I use to think it was "only" and arm. Now I know better.
Kath
I guess I will jump in and put my two cents... or sixty cents in...
This is a great thread it has been so interesting reading everyone's experiences and opinions and each person has made a point.
I am obpi I have never had surgery. In 1940 it was too risky and my mother declined. She did allow what was considered an experimental brace. She had to have it made and it was costly for that time. I was in what was called the traffic cop position similar to the statue of Liberty brace ( __! ) my arm went straight out from my shoulder and then up. It had steel and leather and velvet and it strapped my arm up. My arm was only taken down for exercise and massage and then back up again I wore it until I was 11 months old. Their was a boy on the next street who’s parents choose a different therapy a year later only massage and I think cast he never moved his arm. Does this mean my Mother was right and his mother wrong-- I don't think so I think each parent chooses to do what they felt was right and as a parent and now grandparent I have learned to trust my GUT.
I researched surgery in about 1972 and in my thirties I would not have risked it but I was told there was none. In my forties I would have taken any chance to be able to turn my palm up and to strengthen my arm. Now in my 60's I find that there is a surgery but I think the risk for me is too great because of the 62 years of overuse and wear and tear on my unaffected arm and hand. I cannot afford to risk possible loss of what use I have in my right arm. I was just recently x-rayed and the joint and finger problems I have are not connected to-- my age or the aging process. I do not have arthritis any where but in my hands and of course they are worst on the eight strong fingers and none on the ring and pinkie of my right obpi hand. Actually I am quite healthy except for the secondary injuries related to obpi. As most of you know the bpi side of our body is smaller and so are our arms, feet, breast, and hands and I had T1 injury so my right eye is smaller and part of my face is paralyzed. This does put us permanently a bit out of kilt. Because of the secondary injuries to my left hand and fingers I may need to have my joints replaced on my left hand so now the risk of surgery is too great for me. Had this surgery been available when I was younger my answer is YES. As I matured I realized that many of the normal life functions revolved around the ability to supinate and probably I would have had less wear and tear on the left side. remember I am 62 years into this injury and most certainly a long termer.
I look almost normal and it also takes a keen eye to notice. I functioned so highly in society that I had to prove I had a permanent injury when I tried to retire. I was one of the more severely injured babies. I learned very early in life how to position my self to hide my arm and not to bring attention to it. I developed a way of dressing and moving and sitting to bring the least attention to my arm. This became a way of life for me and I never thought much about my arm until the unaffected arm began to fail me about 10 years ago. That means at 52 years old it was the first time I really paid attention to my arm and needed more information.
I think the choice for surgery is so personal and so gut wrenching for any parent that it is hard not to be emotional about it.
I have had pain as long as I can remember but pain is also a personal issue. If you are always in pain and never knew what it felt like to be out of pain you don't complain about it. I now understand why doctors have said I have a very high pain threshold. Also children do not know how to describe pain and doctors often state “no pain with Erb's Palsy" as if they had it! So pain denied does not exist but, pain is a real part of our life even if we choose to deny it. I was just recently told, by a Neurologist that with Erb's Palsy there is no real pain for a child. He felt all the pain now was due to secondary injuries. Of course I now educate them that pain was always part of this injury its just children do not have the words. Every growth spurt caused something different for me then for my peer’s. I used to wonder why I had so much more difficulty doing things then my peers. I never blamed it on my arm or used my arm as an excuse but just wondered to my self why I always had to go to the doctor because I pulled something in my neck, arm, back and I was down for the count. This started for me in my late teens and after that I was given a pill every time my back went out. This never seemed to happen to any of my friends. I never realized that it was all related to my arm. I totally discounted my arm has having any effect on my neck legs and back, eyes, breathing... all the things that are connected to being obpi. And being young, strong and fiercely independent I never shared these feeling with anyone – not even my Mother and we were very close. Of course we had to be because she worked on me constantly even if I did not realize it.
I think our injuries are each so different that they are like fingerprints and therefore each one is an experiment. The way it affects us, the way we heal, the pain levels, the functions all of these things make each injury unique and individual.
I would love to see a long range study using all categories. Those of us who are older who never had surgery, the younger adult/obpi that has had surgery and then later on the children with and without surgery. This type of study would help in many ways. It could prevent future secondary injury to the unaffected arm. It could help with many of the life functions that cause secondary injury and perhaps prevent the children from some of the serious side-effects of untreated bpi injury. Many of the adult/obpi stopped therapy at very early ages and did not have instructions to take care of themselves we were told the one arm was strong enough to support us for life. Well, check with the adult/obpi – secondary injury and overuse is a reality and it begins at all different ages... So one thing I know for sure surgery or no surgery PT/OT and ROM is a lifetime commitment for those who are birth injured. I am not sure but I think that some tbpi many need to continue to do some form of therapy and learn to protect the unaffected arm. We have no long range study but we have adults who have lived with this injury for many years. I also wonder if this injury affects boys differently then girls and had different overall effect as adult/obpi???? This type of study could be done by questionnaires not by depriving or giving treatment – it would just study those of us who have lived with this injury for long term.
Karen I just read your posts. I am sure that Gavin in no way would think that you think less of him for his injury.
I really thought that I was just normal I was like any of the other children in my family. I never once thought that my arm made any difference.
I thought my arm was something that just happened when I was a baby I did not know it had life long effects. I use to think it was "only" and arm. Now I know better.
Kath
Re: Experimental surgery?
Kath, I'm glad you posted, and I have a question i hear so much about dislocations. Did you ever have problems with that? I've always been curious. TIA
Paula
Paula
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Karen Hillyer
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Re: Experimental surgery?
Krista
In no way did I mean to denigrate your child's injury, there would be little point in my doing that, especially as my own child has a group 4 injury.
BUT the point I wanted to try and get across is that there are worse things that can happen to a child than this injury- I have spoken to a Mum who also suffered a shoulder dystocia like me and many other mums - but her baby died. I can't tell you how awful I felt, thinking about my child and her child, there really is no comparison.
Anyone who knows me will know that I am firmly on the side of educating clinicians to provide better services for pregnant Mums, so I am NOT saying it's ok for this to happen, just that it isn't the worst thing to happen to a child.
I have to add here, that I may have a different perspective to many families, because I also have a child who has an autistic spectrum disorder and his difficulties are very profound, so perhaps it's my perspective that's skewed here.
I don't think anyone needs to apologise for their anger about their childs injury - but time is a great healer, Francine is correct, after a while(many years)
you do see things differently.
Karen
In no way did I mean to denigrate your child's injury, there would be little point in my doing that, especially as my own child has a group 4 injury.
BUT the point I wanted to try and get across is that there are worse things that can happen to a child than this injury- I have spoken to a Mum who also suffered a shoulder dystocia like me and many other mums - but her baby died. I can't tell you how awful I felt, thinking about my child and her child, there really is no comparison.
Anyone who knows me will know that I am firmly on the side of educating clinicians to provide better services for pregnant Mums, so I am NOT saying it's ok for this to happen, just that it isn't the worst thing to happen to a child.
I have to add here, that I may have a different perspective to many families, because I also have a child who has an autistic spectrum disorder and his difficulties are very profound, so perhaps it's my perspective that's skewed here.
I don't think anyone needs to apologise for their anger about their childs injury - but time is a great healer, Francine is correct, after a while(many years)
you do see things differently.
Karen
Re: Experimental surgery?
There is alot of good conversation here, however, I will still agree with Karen and it does not matter the ocean between us. I work with Dementia patients, 40+ hours a week. I currently work with a man who has a diagnostic tool for kidney disease named after him and was a renowned nephrologist. Currently he is not in our reality and never will be. I have seen children when I have taken my son to therapy that are on portable ventilators, cannot walk, sit-up, eat normally(tube fed), etc. So, in the grand scheme of things, he can live quite a great life with one arm weaker than the other. This is not my choice, it is the reality of the situation and to put all my energy into something that will not change the situation, but frustrate me is not healthy for me. Don't get me wrong, we have had extensive therapy, surgical consults, and I emphasize consults, and surgery decisions are very personal. I, nor Karen, in no way said that an arm is just an arm and it is no big deal, as is what is being read into the threads. But it is also not the end of the world either when it is put into perspective. I guess I don't have the time or energy to turn every experience my child and I have into BPI related. I also don't think that it is healthy to perseverate on one issue when the world is wrought with many. Right now, I guess my focus is on my daughter's learning disabilities, my good friend's mother and father dying of cancer, helping a co-worker who's mother is dying after a massive stroke, assisting to put together an infrastructure in our community for bioterrorism because of the terror that grips this country and those incredibly scared and grieving people in the Washington D.C. area.
It is just my opinion that life is and should be more than BPI. That's the wonderful thing about this support board, opinions are welcome. Thanks.
It is just my opinion that life is and should be more than BPI. That's the wonderful thing about this support board, opinions are welcome. Thanks.
Re: Experimental surgery?
Nettie-
thank you for sharing where your mindset is and why... and just know that others might be in a different mindset than you are in and that's ok. Everyone still needs to be supported at whatever level they are at. The concept of having a child that has a BPI might be the biggest thing that a person has had to deal with in their entire lives, it's HUGE for them and should not be diminished because someone else sees things differently. In time they will process their experiences and feelings and things will shift for them... but only in their own time.
In my life, I deal with middle aged and senior adults that are in tremendous debilitating pain from secondary issues that have caused degeneration and crippling effects so that is why my own personal focus is working toward a pain-free life for Maia. And yes - it's been my main focus for four and one half years.
In my experience, oceans between us do matter. I have been communicating with a gentleman in a third world country about this child with bpi and the cultural aspects are SO completely different that I've learned quite a lot. How the people in the U.S. deal with these things is completely foreign to this gentleman - the mindset is something I've had a hard time understanding personally.
Even within UBPN where Awareness Week was an international effort for the last two years - it became more of a national effort this year because of differences that have to be understood better.
Everyone's mindset and decisions are based on how they view the scenerio. We each view it differently and that's great that we do because we bring of all these viewpoints and experiences to this post.
respectfully,
francine
thank you for sharing where your mindset is and why... and just know that others might be in a different mindset than you are in and that's ok. Everyone still needs to be supported at whatever level they are at. The concept of having a child that has a BPI might be the biggest thing that a person has had to deal with in their entire lives, it's HUGE for them and should not be diminished because someone else sees things differently. In time they will process their experiences and feelings and things will shift for them... but only in their own time.
In my life, I deal with middle aged and senior adults that are in tremendous debilitating pain from secondary issues that have caused degeneration and crippling effects so that is why my own personal focus is working toward a pain-free life for Maia. And yes - it's been my main focus for four and one half years.
In my experience, oceans between us do matter. I have been communicating with a gentleman in a third world country about this child with bpi and the cultural aspects are SO completely different that I've learned quite a lot. How the people in the U.S. deal with these things is completely foreign to this gentleman - the mindset is something I've had a hard time understanding personally.
Even within UBPN where Awareness Week was an international effort for the last two years - it became more of a national effort this year because of differences that have to be understood better.
Everyone's mindset and decisions are based on how they view the scenerio. We each view it differently and that's great that we do because we bring of all these viewpoints and experiences to this post.
respectfully,
francine
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Re: Experimental surgery?
hmmmm what would i rather for my child out of the two, brain damage or an injured arm? my daughter is PERFECT hurt arm or not and all of this bitching and moaning is silly..just love your children people!!
Re: Experimental surgery?
Francine, I couldn't agree more with your comments on people being in different stages of coping. I personally feel people who don't know about BPI or have experienced care taking of it can undermean how difficult it can be. That is why I come here to share, because I get enough of the "Oh its not that bad", and "Your daughter is lucky its not worse" everywhere else. Hearing these things over and over makes me upset. No offense meant to any of the above posts, just my feelings towards my situation. My daughter is 3 now, and I was starting to feel better about accepting her injuries (more than just bpi), until the doctor who delivered her lied through his teeth about conversations and what really happened during the delivery. Its funny how they can be your best friend right after delivery, but once they are put on the spot to take responsibility, it can be a whole different story. Oh and yes I do know many children have different injuries/illness's, and I do respect their situations as well and don't mean to undermean anyone else's situation either.
Re: Experimental surgery?
I can relate to everything being said here!! My views flucutate daily depending on how my Daughter is fairing that day.
Blessings,
Lenni
Blessings,
Lenni
