United Brachial Plexus Network, Inc.

54 years left obpi Sharon

I have been asked "If I were in a parents place and still had the knowledge and understanding of my experience, would I have surgery done?" I take this to mean would I choose surgery for my child if he/she were obpi with the knowledge and experience I have today. I hope this is how this parent meant it.

Tough question. As a parent, if there were an option for surgery and if there were positive results with others and if I could beleive the percentages of whether it would help or not, I would opt for surgury for my child. At my age now, I would not even consider it as I would hate to lose what movement I have and of course the several problems that obpi has caused would still be her with me.

I'm sure my mom would have chosen surgery if it would have been an option.

NOW....Let's get some feedback from the rest of you obpi's about this. Our board is also for the parents of obpi children as we are their future in many ways. We can cry, yell and complain, we can compare us to each other but lets also think of ways we can help the parents. How about it.
I've heard it said when you are helping someone else, things don't seem as bad for one's self.

Sharon

Sharon

That is a very good question.
Kath 62 year old right OBPI.

My Mother was offered surgery. I am 62 so they knew that the results were not good. She choose to go with a brace that was made especially for me and was considered experimental along with massage therapy and exercises...ROM (now I know what they are called) My childhood was filled with --try this and try that... and playing with me ... but now that I look back it was all geared to getting that arm to finally move.

If I were younger I would have surgery on myself if I thought it was possible for me to supinate... that is truly one of the movements I would most like to be able to do... but my age is against me... and the fear of loosing what I have on the right obpi side and the left side is in such poor condition...

With all that I have learned since coming to this board and having seen so many of the gains the children and Nancy B has gained I think ( I am not in the parents shoes )but I think I would choose surgery for my child.
First to get more movement and secondly to prevent some of the contractures. I think this would strengthen the arms so that they would work as a team - thus preventing so many of the complication caused by compensations....
I would also encourage my child to exercise regularly and not feel that their "good" arm can carry the load ... because I know now that we wear out our "good" arm and by age 50 or so we are in real trouble... it is amazing how hindsight is 20/20 ...

You are right we are the babies future and if we can openly share our experiences ( Something we still are not use to doing, most adult/obpi never spoke about ourselves or complained about our arms until we found this site... so its hard to start....) We the adult obpi population not only help our selves heal old wounds but possibly prevent secondary injuries for those young bpi kids and also the newly injured tbpi ....
In numbers there is power and with those who come to this board perhaps we will be able to get better medical attention and care for our "old" injuries. Instead of being ignored as if we are use to it....

Compensation and our need to be independent without proper OT may have contributed to our pain issues today... I have more pain on the "un-affected" side all the time... and that has become my weaker side...

Thanks for starting this great post...

OK guys your turn now....
Kath

kathleen - a question about compensation

some things our kids can do and some things they cannot leaving the only thing left to do - which is compensation - can't be avoided

so what suggestions do you have?

Francine
I have thought about this many times. One of the issues that many adult/obpi face is the fact that we were never given OT or formal PT...

Since most complain of Osteoarthritis and how badly our fingers wrists and shoulders are damaged.

One of the things I thought about was a way to teach the children to use more of their body for strength instead using their fingers and hands... I use to move my couches around the room using my knees pushing instead of using my arms...

also introducting tools for many simple things--- to prevent the wear and tear stress...on hands and arms..

Like jar openers... and scrapers for glue stuck to things... etc... it may seem a bit like pampering because they are strong now... but by watching YOU use these tools they will think it is normal. They will naturally use comfort tools... electric can openers... and fat soft handled tools... just protection and perhaps prevention.

ALSO... carrying heavy stuff... I know I just kept piling things into my arms ... until it is worn out...

Back packs and those on wheels that have to be pulled.... make me worry about the kids...

In other words I think that their "unaffected" arm should be protected so that they will not face so many issues as those of us who never had any information on how to protect our unaffected arms...

In fact I was told that my arm was so strong that I would never have to worry ... is was so well developed... and now... can't lift anything over 10 lbs on either side...
This is why we need long range study and some imput from doctors and PT/OT on this subject... If this type of protection is introducted at approiate times it will be come a way of life for the kids and they will not even realize it... Because MOM uses these tools.... to make her life easier... am I making sense ... ?
Hope I was not too confusing... The kids have to compensate...just as I do... its just finding ways to make things easier on their hands arms and shoulders.
Kath

Great discussion. Kathleen, I wish to respond to a comment you made, which was so important. "Using your body for strength" (not just fingers or hand) is what Feldenkrais Method is all about. I really encourage people to look into this therapy method more closely. It has been amazing for us to watch our daughter use her entire body to regain motion. Really amazing... Cathy

Cathy

Thanks for telling me I am on track with some of my thinking. As I have had very little success in gaining information from doctors on how to handel this injury... And lots of misinformation. I have had to follow my gut instincts. Investigate by reading medical information on this subject and then try to consolidate information and use what I need for better medical care as there is very little to no material to support the adult/obpi in their quest for better medical care,PT or even prevention of secondary injury. For some it is too late and they need to retire from their jobs and yet are deprived of disability because the documentation is not there to prove that long term overuse/abuse to unaffected arms requires them to stop working and just maintain what little use they have left. It adds so much to the frustration level of adults when we are faced with medical professionals who have little to no understand about the ramifications of long term obpi injury.
One of the greatest needs of the bpi community in general is a LONG RANGE MEDICAL Study... Using those who have lived with this injury for 20/30/40/50/60 some odd years would give great insight on how to treat and prevent future secondary injuries.

You know first hand that there was little to no information for the parents of obpi until the last few years when you provided it. So you can just imagine how challenged those of us who are long term adult/obpi are in getting competent medical advice and care. Now we can all help each other...
Adult/obpi with hindsight and of course we all know that hindsight is almost 20/20...

I wonder if Feldenkrais Method is available for all of the children? Should this be incorporated as part of the necessary PT/OT treatments to prevent secondary injuries? Would this be covered by insurance or perhaps part of Early Intervention?
I wonder if those of us who have already abused our "unaffected" arms by the years of overuse would profit from this type of treatments or is it too late?
Kath

Francine, I hope this doesn't sound like too dumb of a question but, I thought the surgeries that are being done on the children would give them more mobility. Am I wrong. Could you please explain a few of the things that are accomplished by the surgeries. I have been under the impression more mobility would mean less compensation. Thanks Sharon

Sharon I thought that too, the whole point of the multiple surgery is surely so they don't have to compensate? It's the compensation that causes the long term problems I was told. I don't see how the children will avoid the long term issues if they need to compensate plus surgery itself can cause long term problems (mental as well as physical)so what exactly is the advantage long term?? Unless there was a pretty good chance of NO long term issues, then no, I wouldn't put my child through it, even for slightly increased mobility now.

Sharon - good question. Yes more mobility but they still have BPI - perfection it is not. Can't be.

I like to look at it this way. Maia had absolutely nothing. Now she has something. Every child gets something but what degree of something. Whereever there is still nothing, there is compensation. Now, there is still a chance that nothing can become something. They say up to 5 years now.

Also - when they still have nothing they learn how to compensate and then it's very difficult and takes a lot of work to break the habit - even though the arm might work and might be able to do a task - the compensation thing is already a brain pattern.

Does that make more sense?

Sharon - you need to come to a picnic and see the kids. We'd love to have you. Keep you eye on http://www.injurednewborn.com/gatherings.html to see if there's one close to you...

-francine

Francine

Has there been any information on the Long Island or Westchester Picnic yet..???

I heard there might be one at Iona college from someone who is not on the boards and they thought Dr.Nath was going to be there?

That would be great.... I hope it happens...

Thanks for explaining...
I wonder sometimes too..
Since I know how many years it took to get any movement for me and when I see the kids compensate they look a lot like me....
I wonder if the surgery will prevent contractures and lots of other secondary issues even if we compensate alike...

Kath