Amputation?
Amputation?
Thanks for responding to my post (How do you cope with frustration) back on 11 November. Knowing that people still lead an active life style after a BP injury is inspiring. However, does the inactive arm get in the way? What about shoulder sublaxation, is there ways around this dislocation? I have contemplated having my right arm amputated. I know this sounds extreme but, I have no bicept, tricept or, forearm. Attempting to run or ride a bike is very frustrating and difficult. I am an ex-Navy diver, and am PADI qualified. I am contemplating moving to Florida (Pine Island. There I could definately get back into diving, as diving would be injury friendly. I am new to this site and would enjoy feed back. I think we can all benefit from this web site. Fred
Re: Amputation?
No nerve transfer surgery? I can't remember when your original injury was but if it was recent, I would caution you to consider anything as extreme as amputation. Because, you can't go back. Are you getting occupational therapy? Have you consulted surgeons? You don't have any pain? If you do, it won't help with the pain. If you don't, then you are truly fortunate. My son is in excruciating pain. Such a difficult injury and so hard to make the adjustment. My heart goes out to you and all of the other courageous people who have experienced this injury....Michele
Re: Amputation?
Fredrick,
Amputation is a big step that is final. I would think long and hard before doing something that drastic. But only you can make that decision. My daughter's shoulder was subluxed before she had nerve and muscle transfers. It's been 6 months since surgery and the subluxation is much less. The gracilis muscle was transferred into her upper arm and is attached to her collar bone. I think this helps to pull her shoulder back up into place and now that she is getting muscle movement it really isn't noticable like it was before surgery. They can also pull the trapezius muscle up to help bring the shoulder back into place. I've also heard of people having their shoulder fused but sometimes this leads to more pain. As far as the arm getting in the way, Mel uses a sling or she simply carries her arm or uses her leg as a "shelf". When she runs she finds it easier just to hold it. I hope you find the right answer for yourself. Sue
Amputation is a big step that is final. I would think long and hard before doing something that drastic. But only you can make that decision. My daughter's shoulder was subluxed before she had nerve and muscle transfers. It's been 6 months since surgery and the subluxation is much less. The gracilis muscle was transferred into her upper arm and is attached to her collar bone. I think this helps to pull her shoulder back up into place and now that she is getting muscle movement it really isn't noticable like it was before surgery. They can also pull the trapezius muscle up to help bring the shoulder back into place. I've also heard of people having their shoulder fused but sometimes this leads to more pain. As far as the arm getting in the way, Mel uses a sling or she simply carries her arm or uses her leg as a "shelf". When she runs she finds it easier just to hold it. I hope you find the right answer for yourself. Sue
Re: Amputation?
Fred, Did you say your injury was July, 2005? What is the extent of injury. Any avulsions? And did I see you have hand movement? Sorry to ask so many questions, I was reading in the frustrations sect. to see if I could get more info. Dustin had bad sublexation, we used two different sling types to help stop that, then with exercise there is very little left. Are you in Milwaukee? Have you been to Froedert? I think that since the accident was little over 1 year ago, I would give it more time before I took a step that drastic. These injuries can take a long time. I too agree that amputation is a big step.
Sue
Sue
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jennyb
- Posts: 1183
- Joined: Fri Nov 02, 2001 5:24 pm
- Injury Description, Date, extent, surgical intervention etc: January 1980 Yamaha RD200 vs 16 wheeler truck, result, 1 totally paralysed right arm. I was 21, now 54. I had no surgery, I don't regret this. Decided to totally ignore limitations (easily done aged 21) adapted very quickly to one handed life, got married, had 3 kids, worked- the effect of the injury on my life (once the pain stopped being constant) was minimal and now, aged 54, I very rarely even think of it, unless I bash it or it gets cold, then I wish I'd had it amputated :) Except for a steering knob on my car, I have no adaptations to help with life, mainly because I honestly don't think of myself as disabled and the only thing I can't do is peel potatoes, which is definitely a good thing.
Re: Amputation?
Hi there
I've had my bpi since 1980, and after I had no significant recovery for 3 years, the docs recomended amputation,an idea I firmly rejected at the time.
However, I'm now almost 48 and boy do I wish I'd considered amping the arm years ago...it's a very heavy weight to carry around all those years and the resultant strain has caused me all kinds of neck and shoulder problems, plus I live an active lifestyle in which in insensate and vulnerable limb is constantly exposed to harm, and any injury to the arm takes months to heal. I agree it's a big decision, but I've yet to meet anyone with a bpi arm who amputated who regrets it, for most people they say they wished they'd done it years before. Nowadays I think that choosing to retain the arm purely so I'd look more 'normal' was the more extreme decision than amputation would have been.I know now that I would probably have had an even more active life if I'd amputated, because as I'm sure you're finding, the dam thing gets in the way and gets hurt all the time!
On the UK tbpi website is a guy called Jacko who has amputated and he does diving, you should check out the message board there.
I'll be interested to hear what you decide to do :0)
Jen NZ
I've had my bpi since 1980, and after I had no significant recovery for 3 years, the docs recomended amputation,an idea I firmly rejected at the time.
However, I'm now almost 48 and boy do I wish I'd considered amping the arm years ago...it's a very heavy weight to carry around all those years and the resultant strain has caused me all kinds of neck and shoulder problems, plus I live an active lifestyle in which in insensate and vulnerable limb is constantly exposed to harm, and any injury to the arm takes months to heal. I agree it's a big decision, but I've yet to meet anyone with a bpi arm who amputated who regrets it, for most people they say they wished they'd done it years before. Nowadays I think that choosing to retain the arm purely so I'd look more 'normal' was the more extreme decision than amputation would have been.I know now that I would probably have had an even more active life if I'd amputated, because as I'm sure you're finding, the dam thing gets in the way and gets hurt all the time!
On the UK tbpi website is a guy called Jacko who has amputated and he does diving, you should check out the message board there.
I'll be interested to hear what you decide to do :0)
Jen NZ
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Susie Kaye
Re: Amputation?
Hi there!
I was injured 5/12/00. I waited 3 years and when I was unable to get any function back in my totally flail arm, I decided to have the arm removed to save me pain in my neck and back. I haven't been sorry. You need to make absolutely sure that none of the surgeries out there won't help you. Once it's gone, there's no going back! If something new come's out in a year or so that works miracles, you won't be able to do anything.
So think long and hard and make the choice that is best for you.
God bless you,
Susie Kaye
PS I'm not active. It is still easier without the inconvience of the flail arm hanging around.
I was injured 5/12/00. I waited 3 years and when I was unable to get any function back in my totally flail arm, I decided to have the arm removed to save me pain in my neck and back. I haven't been sorry. You need to make absolutely sure that none of the surgeries out there won't help you. Once it's gone, there's no going back! If something new come's out in a year or so that works miracles, you won't be able to do anything.
So think long and hard and make the choice that is best for you.
God bless you,
Susie Kaye
PS I'm not active. It is still easier without the inconvience of the flail arm hanging around.
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admin
- Site Admin
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- Joined: Mon Nov 16, 2009 9:59 pm
Re: Amputation?
Fred, I thought about amputation. I thought about lots of things which I'm glad I didn't go through. What helped me was wearing a sling tightly. That way my arm doesn't flap around and ppl on the train know to give it some room.
It sounds morbid, but the main reason I didn't go through amputation was I didn't want my arm discarded in the garbage nect to other "medical" waste. Just incase there's that slim chance that a medical miracle can happen, you have a chance. Remember, they do amazing things with technology.
It sounds morbid, but the main reason I didn't go through amputation was I didn't want my arm discarded in the garbage nect to other "medical" waste. Just incase there's that slim chance that a medical miracle can happen, you have a chance. Remember, they do amazing things with technology.
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jennyb
- Posts: 1183
- Joined: Fri Nov 02, 2001 5:24 pm
- Injury Description, Date, extent, surgical intervention etc: January 1980 Yamaha RD200 vs 16 wheeler truck, result, 1 totally paralysed right arm. I was 21, now 54. I had no surgery, I don't regret this. Decided to totally ignore limitations (easily done aged 21) adapted very quickly to one handed life, got married, had 3 kids, worked- the effect of the injury on my life (once the pain stopped being constant) was minimal and now, aged 54, I very rarely even think of it, unless I bash it or it gets cold, then I wish I'd had it amputated :) Except for a steering knob on my car, I have no adaptations to help with life, mainly because I honestly don't think of myself as disabled and the only thing I can't do is peel potatoes, which is definitely a good thing.
Re: Amputation?
Funny thing is, I was really worried about that too-NO WAY was anyone going to throw my arm (my ARM!!!!) out with the trash! I found out that they will give it back to you in the UK so you can bury it where you want to, and now I live in New Zealand I've checked and patients here have the same rights over their own body as in the UK, and I am free to take the arm and dispose of it as I want to.I think it's very important, on what basis would anyone else (ie a hospital) have rights over your body parts?
Just to clarify, I wouldn't advise anyone to amputate before at least 3 years post accident, changes can and do happen.
Good luck with the decision :0)
Jen NZ
Just to clarify, I wouldn't advise anyone to amputate before at least 3 years post accident, changes can and do happen.
Good luck with the decision :0)
Jen NZ
Re: Amputation?
HI FRED
MY NAME IS TONY I LIVE IN THE UK, YOU ARE A BRAVE MAN TO CONSIDER AMPUTATION. I HAVE THOUGHT ABOUT IT MYSELF BUT NEVER BEEN MAN ENOUGH TO GO FOR IT.
I AM 39 YEARS OLD NOW I DONE MY ARM WHEN I WAS 18 YEARS OLD, I GET ON WITH MY LIFE BY WORKING HARD AND PLAYING HARD I LOVE TO TRAVEL I LOVE TO SKI, FISH ON MY BOAT, I HAVE DONE SOME DIVING THIS IS A MUST AS I WANT TO BECOME QUALIFEID.i got 3 lovelly daughters they make me very proud.
MY ADVISE TO YOU MATE IS DO WHAT YOU FEEL BEST, BUT THERE ARE A FEW THINGS YOU MUST WEIGH UP IN YOUR MIND BEFORE YOU PROCEED WITH SUCH DRASTIC DECISION.
1. WILL THE PAIN GET WORSE IF YOU GET YOUR ARM TAKEN OF.
2. WILL YOU BECOME MORE SPICABLE IN PUBLIC.
3. ONCE IT IS OF YOU WILL NOT BE ABLE TO CHANGE YOUR MIND.
4. WHAT ARE THE ADVANTAGES AND DISADVANTAGES.
5. does your arm effect your diving skills i expect not.
WHAT EVER YOU DECIDE MATE GOOD LUCK...
KEEP IN TOUCH MATE MY EMAIL IS tonyholt36@hotmail.com
if i can help give us a shout any time.regards TONY
MY NAME IS TONY I LIVE IN THE UK, YOU ARE A BRAVE MAN TO CONSIDER AMPUTATION. I HAVE THOUGHT ABOUT IT MYSELF BUT NEVER BEEN MAN ENOUGH TO GO FOR IT.
I AM 39 YEARS OLD NOW I DONE MY ARM WHEN I WAS 18 YEARS OLD, I GET ON WITH MY LIFE BY WORKING HARD AND PLAYING HARD I LOVE TO TRAVEL I LOVE TO SKI, FISH ON MY BOAT, I HAVE DONE SOME DIVING THIS IS A MUST AS I WANT TO BECOME QUALIFEID.i got 3 lovelly daughters they make me very proud.
MY ADVISE TO YOU MATE IS DO WHAT YOU FEEL BEST, BUT THERE ARE A FEW THINGS YOU MUST WEIGH UP IN YOUR MIND BEFORE YOU PROCEED WITH SUCH DRASTIC DECISION.
1. WILL THE PAIN GET WORSE IF YOU GET YOUR ARM TAKEN OF.
2. WILL YOU BECOME MORE SPICABLE IN PUBLIC.
3. ONCE IT IS OF YOU WILL NOT BE ABLE TO CHANGE YOUR MIND.
4. WHAT ARE THE ADVANTAGES AND DISADVANTAGES.
5. does your arm effect your diving skills i expect not.
WHAT EVER YOU DECIDE MATE GOOD LUCK...
KEEP IN TOUCH MATE MY EMAIL IS tonyholt36@hotmail.com
if i can help give us a shout any time.regards TONY
Re: Amputation?
If you haven't tried a sling for your activities, try that first.
I run & bike with a sling, and don't think about my arm at all while I do. I swim without one, but the water makes it pretty weightless.
Being active has made all the difference for me, so I don't see a real advantage to amputation at this point.
I'm still holding out for a miracle some day
Heddi
I run & bike with a sling, and don't think about my arm at all while I do. I swim without one, but the water makes it pretty weightless.
Being active has made all the difference for me, so I don't see a real advantage to amputation at this point.
I'm still holding out for a miracle some day
Heddi