United Brachial Plexus Network, Inc.

Liz,
How I wish I could join you all on the 24th.

Thank you so much for your thoughtful comments. It does help -- we have so much to learn from one another, and at best, we can only share our own experiences and hope they will be helpful to others.

A decision about surgery is a very private and often a very difficult decision. I can only say that I searched my entire life for something that might give me more function and given the chance, I went for it, knowing in my case, that this mod quad had never been done on anyone my age and that it might not work at all. So as the function and range of motion has improved so significantly, it has intensified my feelings of elation at what is possible. I expected nothing, I gained a great deal. As obpi, I never had these capabilities so I am not regaining something I previously had, I am gaining it for the very first time. At my age to be given this gift of renaissance is a treasure.

Nancy

I was 60 years old when I suffered my RBPI. It is a trauma, both physically and mentally, when this happens, regardless of age. I was planning on enjoying the "golden years". Those plans were replaced with pain, a flail arm, and many searches to find a doctor that knew about BPI's. I had surgery Dec 5, 2000, with the thought "nothing ventured, nothing gained". Then I found out in August,2001 , that the surgery was just an exploratory and nothing had been fixed. What I have regained, I would have regained, with or without surgery. I have been told that three years post trauma will be the time frame of recovery. I do not have full use of my hand and arm, but I am grateful for what I have. I give my praise to God. I still have a lot of pain but I try to keep the hand and arm busy. All I can add is, Keep faith and don't give up. Rhoda

Hi , i replied this once but hit the backspace button and lost it? Anyways, to reply from MY (TBPI)perspective; im afraid occasional anger and avoidance are clasic symptoms post trauma. I went into FIGHT mode when i was told by the ward sister the paralysis could be permanent, i was like 'oh, we'll just see about THAT lady'. Frustration, especially in the early months can build and build until it has to be released somehow, exactly as you say yelling and punching walls etc, i have been there done that trust me. The best way to deal with it in my opinion is to not let it build so far, far better to let off an emotional 'firecracker' every now and then when something frustrates, than to repress the feelings until theres a bomb ticking away inside, if that makes sense?
And socially, of course serious, often disfiguring injury affects that. Only speaking from my view here but previously being strong and fit then suddely having a very weakened skinny arm of COURSE affects confidence; i always loved the beach but since BPI it was almost 2 years before i would take my shirt off in public because what man wants a right arm that looks like a twig?? THat's what some folks find hard to grasp, the embarrassment factor. Some say why would you be embarrased? only trying to make you feel better but i think 'work it out, idiot'. ive been SO lucky (and worked hard) to get good recovery and build my arm back tho its not going to be the same as it was.
And the post mentioning sports, YES sports are a very good fitness and confidence booster, i learned to ski (ok, dangerously!) after BPI and i will get up to speed at windsurfing when i learn to work around my BPI hand weakness - i just talked with an instructor who knows a ONE ARMED windsurf instructor so, where there's a will there's a way i reckoN! Check this link;

http://www.adventuresportsdirectory.com/disability.htm

Obviously, some things are more possible than others, hope that helps a bit with perspective, was your son the lad injured on a snowmobile? Good luck all

Hi Dave,

Thanks for the response. Everything you described is exactly what Eric is going through. Thankfully to all my friends on the UBPN message boards, I understand exactly why it happens. And, I know how very tough this injury is. The pain, the disability, the disfigurement, the fear of not finding a partner in life, the loss of the ability to do things like you could before. He's going to school because he know's it's the only way he can have a decent future. Everytime there's an explosion at my house (usually in the morning and after my husband has gone off to work) I realize that it's just a huge build-up of frustration, anger and pain. Unfortunately, he yells, I cry. Then, I always get the apologetic phone call later in the day because he knows of course that I'm doing everything I possibly can to help including being involved here, arranging for surgery with a specialist, countless appointments and trying everything known to man to find pain relief. Dave, I think you asked me if Eric was involved in a snowmobile accident, it was a car accident, a very serious one and he's lucky it's not complete paralyzation or death. I will check out the link you provided and continue doing the best I can to build up his confidence and be there when he needs me.

To everyone else who responded, thanks to you. This has been a very interesting and thought-provoking discussion here. We are very happy that we pursued the initial surgery because without it there would be no recovery. I don't think we will pursue any additional surgeries at this point however because the return is pretty minimal for a pretty complicated surgery. Who knows what lies ahead 10 years down the road? Stem Cell Research might bring some better solutions I hope.

Liz,

Thanks for your reply and clarification. My main question for you related to your assertion that you wouldn't have surgery unless it was going to give you back 100%. That comment is what surprised me and made me want to hear more about your perspective. I'm not feeling at all negative about this discussion. I absolutely respect every person's right to make their own decisions.

This has been an interesting discussion, highlighting some of the differences in perception between those injured at birth who have never known 100% function; and those injured later in life who have known 100% function. Interesting...

It also highlights some of the differences in perception between parents or relatives of someone injured, and the injured person themselves, and to take it even further, perception in this group alters depending on if the injury occured at birth or later on.

It all seems to relate to the perception of 100%.

Those of us dealing with birth injuries have not known 100%, and our general goal is to get as close to that as we possibly can. (This does not mean undergoing surgery for a .05% gain, however. Most parents would not believe the gain would outweigh the risk, as you state.)

So, my next question is: Does having known 100% dis-incline a person with a bpi from having surgery (if available) if the gain will result in improvement (better than minimal), but not 100%? Perhaps the answer will be different for everyone?

Thanks for helping me to understand better. I'm always trying to think ahead for my son.

Bridget

Hi, i just wanted to add to your reply regarding your son's outbursts and coping; he's only going through a process it's not permanent, everyone finds their own way of dealing with it eventually - i had 2 years in the military cadets as a teenager and the armed forces obviously have a lot of guys to deal with, they teach channeling of the energy, anger is just an energy that can be used positively or negatively. So i already had coping skills in place somewhwre inside that helped a lot. When your son can learn to channel the energy it can be a very good motivator for physio or work, sport whatever, even just going for a walk or run cooled things down when i felt frustration building up. Hope that helps, im sure he'll be fine. :O)

> Hi Dave,
>
> Thanks for the response. Everything you described is
> exactly what Eric is going through. Thankfully to all
> my friends on the UBPN message boards, I understand
> exactly why it happens. And, I know how very tough
> this injury is. The pain, the disability, the
> disfigurement, the fear of not finding a partner in
> life, the loss of the ability to do things like you
> could before. He's going to school because he know's
> it's the only way he can have a decent future.
> Everytime there's an explosion at my house (usually
> in the morning and after my husband has gone off to
> work) I realize that it's just a huge build-up of
> frustration, anger and pain. Unfortunately, he yells,
> I cry. Then, I always get the apologetic phone call
> later in the day because he knows of course that I'm
> doing everything I possibly can to help including
> being involved here, arranging for surgery with a
> specialist, countless appointments and trying
> everything known to man to find pain relief. Dave, I
> think you asked me if Eric was involved in a
> snowmobile accident, it was a car accident, a very
> serious one and he's lucky it's not complete
> paralyzation or death. I will check out the link you
> provided and continue doing the best I can to build
> up his confidence and be there when he needs me.
>
> To everyone else who responded, thanks to you. This
> has been a very interesting and thought-provoking
> discussion here. We are very happy that we pursued
> the initial surgery because without it there would be
> no recovery. I don't think we will pursue any
> additional surgeries at this point however because
> the return is pretty minimal for a pretty complicated
> surgery. Who knows what lies ahead 10 years down the
> road? Stem Cell Research might bring some better
> solutions I hope.

who can really say for sure...I think there is no way to calculate the outcomes,that there is no formula-
...obviously, sights like this where the majority of parents are choosing surgery for their kids- BABIES! I think has a huge effect on what parents choose to do. I honestly believe this site is somewhat responsible for the major surge in surgical intervention in infants for OBPIs experienced in the last few years- that is why I remain active to promote the idea that to choose not to have surgery is a respectable choice, and doesnt indicate even that radical of an idea, quite the opposite as a matter of fact- but the concept of surgery in infants is so far different than that of surgery in adults that I hesitate to comment on it further on the adult board- deep breathe
I think that as long as posts that relay bad personal experiences are continued to be deleted from this message board but posts that relay good experiences arent, the nature of this board will continue to be surgical- no reasons justify the outcome- obviously that is an opinion
After I ingested all the studies I could,filtering them to intake the information as objectively as possible-I had to get my nose out of the studies and into the real world and look at the kids and their injuries and their therapies and their recoveries...and then I had to choose, taking into consideration all my beliefs about the human body mind and spirit-
That makes for a highly subjective and individual experience regarding the choice surrounding surgery- and the difference widens between babies/children/adults because there are so many more varying factors.
Personally I think the impact wholistically is much greater on an infant and a child then an adult but I think most people would be more likely to choose surgery for a child because the gain might logistically seem to be greater ...converse reality...
I really and truly believe that the formula making the decision is so individually affected that it only has to do with percentages of use ,age and pain and other factors on an individual basis...and that is why CHOICE is so important...as is social accptance of the individuals choice.

"Personally I think the impact holistically is much greater on an infant and a child then an adult"
Marymom you are quite perceptive.

Kath and tells you that the impact is greater on an infant and it impacts our entire life from the cradle to the grave.
I as obpi really feel for the parents who are put in the position to make all sort of choices. My mother made the choice for me given the offer of surgery she refused because it was experimental.. Today is the anniversary of my bpi.... she made the best choice at that time. But if she had chosen surgery and it failed I would still feel that she did what SHE thought was right for me.

From all the posts I have read over the past two years I have learned that parents do no make choices for or against surgery lightly. I don't get the impression that parents are pressured into surgery by the boards since I feel most are well educated and mature enough not to succumb to peer pressure when it comes to their babies.
As Bridget said it is where you come from...
If you had a 100% use you know what that is ...
If you have never had full use of your arm ... you truly understand that you are missing some very important functions.
Unless you are obpi there is now way to walk in our shoes. You may see the challenges but you can never see all of them and obpi children do not share with their parents all of the ups and downs of growing up obpi. There are many more issues to obpi then surgery or no surgery

I love these boards it give us all the ability to share freely our opinions and views.
Smiles & blessings to you and Max
Kath

nancy, i glad to hear that Eric is getting recovery,
don't count his recovery as limited, the faith of the mustard seed is what we had with Errett and you saw the pictures of his recovery. keep the faith!
when Errett went for his 1 year check up he was able to hold his arm out to his side about what Eric is and from there with rehab 3 days a week and shock therpy it started coming a lot faster,after the mucles,learned what they were to do, they learned fast, in 2 1/2 years Errett was able to do what he does now you saw,
and Eric is haveing the mod swings like Errett did, they do get better,with time. it is also a coping lesson. Eric will learn in his own way to cope, no one can learn for him. he is strong willed and that is what it takes. he will make it.
and all you can do as a mother is to love him no mater what.and let him know that you love him and are there for him when he needs you. and he will need you.
if there is anything i can do you help you just let me know.
show Eric the pictures of Errett, I'm sure you have .
keep encoungering Eric and strees that the home rehab that they give Eric does help,
you and Eric are still in my prayers

Diana

Errett's recovery sounds fantastic. I'm new to this board so would you please tell me a little more about him - how old he is, possibly send a picture?

I'm 28 and it's four years this month since all 5 nerves were avulsed. I was fortunate in that Thomas Carlstedt at Stanmore operated and re-inserted 4 of the 5 and 'got as close as he could' with the 5th. I continue to gain recovery and have been part of a seminar to discuss and prove that recovery does continue for up to ten years in some cases. I don't really know where to begin to list the things that have helped me other than the surgery but I'd be happy to discuss it in further mails. I'd really like to be able to swap hints for things that have worked with other determined people with this injury and I look forward to any responses.

Dan