In the short time I've been reading these forums I've noticed there is a bit of a split over the option of amputation for BPI. Some people appear very opposed to it but I haven't seen many people come right out and say they are for it. I'd like to start a thread on the topic. I'm curious why people would choose to keep a flail arm for 15+ years, and if people who had the amputation are happy with the decision. The discussion may help those facing a similar delima today.
I'll start out by stating that for those persons who have avulsed their BP nerves I believe it is the most viable long term option for maximizing functionality and improving quality of life. Unless there have been new breakthroughs in medical science lately, we still can't regenerate spinal chord nerves. And there is a time limit to how long after losing inervation that muscle tissue can be revived and provide fine motor control.
I suffered a C5,6,7,T1,T2 avulsion when I was 21, I'm 39 now. I hung in there for ~6yrs then after consulation with my Neurologist decided to have the amputation/fusion. It was one of the best decisions I've ever made in my life. It was a liberating experience after 6yrs of dragging around a useless arm to suddenly be able to move around unencumbered and where my clothes normally. And I didn't realize how much I actually use my left arm until just this week after I broke my clavicle while mountain biking.
I guess body image is probably a big thing. Some might see having an arm, even though withered and "flail", as more acceptable than being classified as an "Amputee". I'd be interested to hear others thoughts on that, I'll withhold my own for now.
Certainly amputation shouldn't be the first response, especially with simple stretches and injuries more than 1.5" from the spine. But for those with avulsions, it should be considered as a seriously viable option.
Amputation as an option
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jennyb
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- 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 as an option
Amputation was offered to m around 2 yr in to the injury, but I was very opposed at the tim. It wasn't that I felt I wanted to wait for medical advances to fix the arm, by 2 years in I was completely adjusted to one armed life and had no interest in 'cure'. It was more not wanting to look even weirder-I was 23 and just felt that amputees were cripples whereas I wasn't, if u see what I mean!
Now, 23 years later, I live a much more outdoor life than I did then and my flail arm causes all the probs described in your other post, it gets too cold for camping/hiking and I frequently injure it. I'm now 44 and have no self consciousness about looking weird any more, in fact I'm aware if I'd made the decision sooner I would probably have less secondary joint pain now. The big stumbling block for me now is that I wouldn't want my amputated arm to be thrown away by the hospital-it's like a helpless baby to me and ITS MY ARM! Most people who hear this think I'm sick, but if the hossie won't let me bring my arm home for a decent burial then I will not amputate.
I'd be very interested to hear how amputation feels-is it a painful process? How sensitive is the stump? How does it look? How long is the recovery period? I am going through the process of deciding to amputate now and want to be as prepared as possible. Most of the long termers I know have already done the chop and I am meeting up with at least 2 tbpi amputees next month, but any extra input would be welcome in this decision making process.
Thanks for posting, amputation for some reason seems to be a shocking topic, but an ice cold flail arm with holes worn in all the fingers that takes weeks to heal up is pretty gross too.
Please any other amputees post here, I need to hear from you! Every single person who I have spoken to who's done it tells me it's the best decision they ever made.
Now, 23 years later, I live a much more outdoor life than I did then and my flail arm causes all the probs described in your other post, it gets too cold for camping/hiking and I frequently injure it. I'm now 44 and have no self consciousness about looking weird any more, in fact I'm aware if I'd made the decision sooner I would probably have less secondary joint pain now. The big stumbling block for me now is that I wouldn't want my amputated arm to be thrown away by the hospital-it's like a helpless baby to me and ITS MY ARM! Most people who hear this think I'm sick, but if the hossie won't let me bring my arm home for a decent burial then I will not amputate.
I'd be very interested to hear how amputation feels-is it a painful process? How sensitive is the stump? How does it look? How long is the recovery period? I am going through the process of deciding to amputate now and want to be as prepared as possible. Most of the long termers I know have already done the chop and I am meeting up with at least 2 tbpi amputees next month, but any extra input would be welcome in this decision making process.
Thanks for posting, amputation for some reason seems to be a shocking topic, but an ice cold flail arm with holes worn in all the fingers that takes weeks to heal up is pretty gross too.
Please any other amputees post here, I need to hear from you! Every single person who I have spoken to who's done it tells me it's the best decision they ever made.
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Re: Amputation as an option
I am not an amputee but a long term BPI (20 years). I just thought I would give you my thoughts. I am sure everyone is different but here goes anyway.
I am 38 years old and will never cut off my arm. I have only heard the term “Fail Arm” since discovering this board a week ago. To me that doesn’t seem to fit for me at least. My arm has blood running though it, the nails grow, I just can’t move it. Really its just been un-plugged, given I had a motorcycle accident, I really failed my arm, it didn’t fail me. Might sound like a play on words be there is wisdom in it for me.
Anyway I am still very attached to my arm both physically and mentally it as it apart of me. I would imagine it would be like getting circumcised at 40. After my accident the doctors recommended (actually recommend would have been half courteous, they where almost insisting) that I cut if off straight away. I listened to there rational, but when I tried to explain my rational, the doctors in there complete arrogance ignored me and wouldn’t even give my the courtesy of looking at me, the picture on the wall in the office held there attention more than I could with my little view about “MY BODY”. The closing comments where that I would never be able to deal with it. Not for the sake of boasting but to illustrate a point, I am sure in my short life I have made more money than all the people combined that where in the room that day. So I would say I have survived and had a great time doing to. Now retired and enjoying life.
I was surprised to hear about the holes in your fingers, I have never encountered this. I have injured my arm once only, I stood to close to a heater within the first 3 years of my BPI and burnt my lower part of my arm near the hand, this had to have a skin graft.
However that was the first and last time as I look after it now. But mind you I look after all the parts of my body anyway. Nowadays I don’t even have to think about it is automatic.
In another post on this board I am trying to track down some medial procedure to make my arm look a bit more normal. I now feel quite self concise about it as I socialize a lot. Also whilst I am not waiting for a medical cure, I know there will be one. It is really just a matter of time. However this time maybe after we are all dead and buried, I am not sure, but the possibility exists. (Hey they can put people on the moon and planning a trip to Mars)
Also I don’t experience this joint pain people talk of, I only get the phantom pain (which is bad enough).
So, I do not want to take anything away from those people who have had there arms amputated, I just know for me growing up as a young man it was important to have it there. I think to a great degree I am vain and I have to be guided by my own true thoughts.
I feel hesitant in writing this post because I think amputation must be such a personal thing and some time less information is more.
Well I hope my insights don’t offend anyone as they are meant to be constructive.
PS. One thing I don’t do is wear a sling (even though the doctors insisted I do), except if I play squash or some other sport. This has stopped my shoulder rising up to high and looking strange. I don’t know what the medical ramifications are about this, but for me it works fine.
Also I got my “Open Water Scuba Diving” Certificate about six months ago. The Arm I failed caused no problems. I do use a wetsuit with short sleeves though. After 14 dives I can now kit up entirely by myself with one arm.
I am 38 years old and will never cut off my arm. I have only heard the term “Fail Arm” since discovering this board a week ago. To me that doesn’t seem to fit for me at least. My arm has blood running though it, the nails grow, I just can’t move it. Really its just been un-plugged, given I had a motorcycle accident, I really failed my arm, it didn’t fail me. Might sound like a play on words be there is wisdom in it for me.
Anyway I am still very attached to my arm both physically and mentally it as it apart of me. I would imagine it would be like getting circumcised at 40. After my accident the doctors recommended (actually recommend would have been half courteous, they where almost insisting) that I cut if off straight away. I listened to there rational, but when I tried to explain my rational, the doctors in there complete arrogance ignored me and wouldn’t even give my the courtesy of looking at me, the picture on the wall in the office held there attention more than I could with my little view about “MY BODY”. The closing comments where that I would never be able to deal with it. Not for the sake of boasting but to illustrate a point, I am sure in my short life I have made more money than all the people combined that where in the room that day. So I would say I have survived and had a great time doing to. Now retired and enjoying life.
I was surprised to hear about the holes in your fingers, I have never encountered this. I have injured my arm once only, I stood to close to a heater within the first 3 years of my BPI and burnt my lower part of my arm near the hand, this had to have a skin graft.
However that was the first and last time as I look after it now. But mind you I look after all the parts of my body anyway. Nowadays I don’t even have to think about it is automatic.
In another post on this board I am trying to track down some medial procedure to make my arm look a bit more normal. I now feel quite self concise about it as I socialize a lot. Also whilst I am not waiting for a medical cure, I know there will be one. It is really just a matter of time. However this time maybe after we are all dead and buried, I am not sure, but the possibility exists. (Hey they can put people on the moon and planning a trip to Mars)
Also I don’t experience this joint pain people talk of, I only get the phantom pain (which is bad enough).
So, I do not want to take anything away from those people who have had there arms amputated, I just know for me growing up as a young man it was important to have it there. I think to a great degree I am vain and I have to be guided by my own true thoughts.
I feel hesitant in writing this post because I think amputation must be such a personal thing and some time less information is more.
Well I hope my insights don’t offend anyone as they are meant to be constructive.
PS. One thing I don’t do is wear a sling (even though the doctors insisted I do), except if I play squash or some other sport. This has stopped my shoulder rising up to high and looking strange. I don’t know what the medical ramifications are about this, but for me it works fine.
Also I got my “Open Water Scuba Diving” Certificate about six months ago. The Arm I failed caused no problems. I do use a wetsuit with short sleeves though. After 14 dives I can now kit up entirely by myself with one arm.
Re: Amputation as an option
Great topic. I too am curious what life would be like without this heavy useless flail arm. I wish i had the courage to part with it but I keep telling myself that i need to deal with that someday. There is not many posts about amputation. There is another thread about a recent amputee and he keeps us updated of his progress. Hopefully more info will help us hardheads to make a decision. I am curious do you use a prostetic or anything? I seen a motorcyclist with a prostetic that allowed him to use his shoulder to help control the bike. I ride one handed ocassionally but seems to risky for me to do it very often.
John K (pushrod243)
John K (pushrod243)
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Re: Amputation as an option
I have a fused right shoulder which is at risk of having the remainder of nerves in the arm die off in the next however many years. Nerve damage from an injury made the joint so unstable that it was dislocating 15-20 times per day. Now it is fused and I can only feel 2 fingers - much worse nerve situation than even 1 year ago. The idea of amputation is not any more concerning to me than the fusion was. I would personally rather have a useless limb removed than drag around something that I can't even feel. I will deal with it when the time comes, I just hope its longer instead of sooner.
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Re: Amputation as an option
Jenny,
First, the hospital will not keep the arm unless you let them. You can make arrangements with a funeral home and they will deal with it for you. Before the procedure I felt the same way you do now. I made arrangements to have mine cremated. I ended up having the Funeral Home dispose of it afterwards but the process was important while I was making the decision to have the amputation.
What does it feel like? A huge relief. As far as discomfort is concerned, the amputation itself was essentially painless. It was the shoulder fusion that caused the most discomfort, but even that was less than the nerve graft surgery I had. The anesthesiologist and I were joking in preop about not needing any anesthesia at all for the amputation
It really was a very easy surgery and I didn't have to wait 2yrs to find out if it worked. Recovery is extremely simple - you just heal; you already live as a one-armed person so there isn't much OT to do. The biggest adjustment is not having the arm flopping around getting in the way, which is a relief, not a burden.
What does the stump look like? A stump, no mystery there. I like the way I look with the amputation much more than I did with the arm. There was an adjustment period but I am very comfortable with my body now.
I have never had a single regret. If you have an avulsion as an adult, you will never have a normal arm. If anyone asks me, I'll tell them not to hesitate, have the amputation. But I would love to hear a good reason to keep the flail arm if someone has one.
First, the hospital will not keep the arm unless you let them. You can make arrangements with a funeral home and they will deal with it for you. Before the procedure I felt the same way you do now. I made arrangements to have mine cremated. I ended up having the Funeral Home dispose of it afterwards but the process was important while I was making the decision to have the amputation.
What does it feel like? A huge relief. As far as discomfort is concerned, the amputation itself was essentially painless. It was the shoulder fusion that caused the most discomfort, but even that was less than the nerve graft surgery I had. The anesthesiologist and I were joking in preop about not needing any anesthesia at all for the amputation
It really was a very easy surgery and I didn't have to wait 2yrs to find out if it worked. Recovery is extremely simple - you just heal; you already live as a one-armed person so there isn't much OT to do. The biggest adjustment is not having the arm flopping around getting in the way, which is a relief, not a burden.What does the stump look like? A stump, no mystery there. I like the way I look with the amputation much more than I did with the arm. There was an adjustment period but I am very comfortable with my body now.
I have never had a single regret. If you have an avulsion as an adult, you will never have a normal arm. If anyone asks me, I'll tell them not to hesitate, have the amputation. But I would love to hear a good reason to keep the flail arm if someone has one.
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Re: Amputation as an option
John,
I don't use a prothesis. With my shoulder fused I wouldn't have enough range of motion to be very useful even if I could where one. My stump is very sensitive to pressure, having the socket over my stump increases my pain too much to make it worthwhile to try figuring out how one could be useful with my limitations.
But you know what, I don't need one.
With a modified handlebar I can ride a mt bike, I free dive, backpack, run, dance, and I'm going to learn how to surf. All of those things would be more difficult and dangerous with the flail arm. At this point you must know that you will never get any function back in your arm at all. Why are you waiting?
I don't use a prothesis. With my shoulder fused I wouldn't have enough range of motion to be very useful even if I could where one. My stump is very sensitive to pressure, having the socket over my stump increases my pain too much to make it worthwhile to try figuring out how one could be useful with my limitations.
But you know what, I don't need one.
With a modified handlebar I can ride a mt bike, I free dive, backpack, run, dance, and I'm going to learn how to surf. All of those things would be more difficult and dangerous with the flail arm. At this point you must know that you will never get any function back in your arm at all. Why are you waiting?
Re: Amputation as an option
Since amputation is being discussed again, I’ve gone back through a previous post and updated it to use here. Sorry if some of you have seen some of this before, but there are a lot of people out there who haven’t.
It’s now 1 year since I had my right TBPI arm amputated. The quality of my life has improved beyond belief. I feel liberated.
Clothes are easy to get on and off, and when I go scuba diving, it is so much easier to get the heavy kit on and off. The same with a rucksack. When I ride my trike, I do not have to spend 5 minutes or more trying to force my hand down the sleeve of my leather jacket or waterproofs (well I do live in soggy Britain). Driving a car, the arm does not now suddenly slide off my lap and get caught between the seat and the door (between the seat and gear lever for those of you who drive on the wrong side of the road !)
I now have more choice of clothes. Elasticated cuffs are no longer a problem. I can wear short sleeved shirts without turning my BPI arm into a piece of crispy bacon ( occasionally we have sunshine too, in the UK ).
Swimming is now much easier now that I am not dragging around an anchor. Before my BPI, I used to really love swimming fast, then suddenly I didn’t enjoy swimming at all. Now I’m starting to enjoy it again. I’d like to be able to get out of the slow lane, and overtake all the old ladies who seem to only use the pool as a liquid social club, so as my fitness builds up, I have a target. The middle lane !
Best of all, my hand no longer gets icy cold in the winter. Before the amp, I used to dread winters, even the British ones which are not particularly severe. Now I have no problems at all.
Don’t even think about amputation until you’ve given your body a chance to start repairing itself. Amputation WILL NOT remove the pain. You need to deal with the pain first and then, and only if there is no recovery after say 4 years, discuss amputation with your consultant. I don’t want to sound like a schoolteacher here, but amputation is the final solution, and may not be suitable for everyone. I’d had a trauma BPI for 5 years, and there was no chance of recovery, even after umpteen operations, so my consultant agreed that amputation might be a good decision. Some people regain a lot of use after 2 or 3 years, and the pain can decrease considerably.
I found that I weaned myself off any type of painkillers as soon as I possibly could, and battled with my mind and body to fight the pain. After my BPI, I vowed that I would not live my life on pills, and fought through the pain. Every time I had really bad pain, I used to ask my body "is that the best you can do? That's pathetic. Come on, try to really give me pain. Sometimes my body would oblige, and the pain would take my breath away, but after a while, my body said, "OK, you're a nutter, I can't fight you." Three years post BPI I was not taking any pain relief. When I went into hospital to have my broken leg repaired I took no pain relief. And when my arm was amputated, I took no pain relief, except one afternoon when I had a paracetemol (I think they’re called Tylenol in north America). I've built up my tolerance, like those people who enjoy fighting, except I'm fighting 24 hours a day against my own body !
I am not trying to convince anyone to go down the same route. It’s a personal choice for each and every person. But if you are in a situation where there is no realistic hope of recovery, and the subluxation creates pain, then it is something to think about. I don’t regret my decision.
Some people are concerned about the visual implications of losing an arm. Personally, I feel happier with no arm than with a withered arm and clawed fingers. I have tried wearing a false arm. It is only cosmetic, but even so, with a few locking positions for the elbow, and a small amount of grip in the hand, I should have been able to do more with that than I could with my BPI arm. As it happens, it’s more trouble than it’s worth, putting it on, pushing it down through shirt sleeves, taking it off, etc. I don’t wear it much at all, but at least with a false arm I have the choice.
Francine asked me for more information about about false arms. This was my reply:
I am no expert, but there are 3 main types of false arm:
1) Electronically triggered by nerve impulses. These are mainly still in the research and development stage, and are in any case, prohibitively expensive.
2) Cosmetic. Basically a latex glove shaped so much like a hand and arm that you cannot tell the difference from more than a few inches away. This has a lightweight aluminium core that has a hinge at the elbow. It is moved into an appropriate position by the other hand, and locked into position by a little spring loaded button. The whole thing is attached to a hollow form made of lightweight plastic which slides over your stump and is held on with straps across the chest.
3) A mechanically operated arm and hand. This is strapped over your stump again, and is controlled by a clever system of levers, pivots, springs, hinges and cords which are in turn controlled by movement of your unaffected arm and shoulder. It sounds bizarre, but can be very effective, by all accounts. Most of the mechanical gubbins is hidden inside the false arm.
I have version (2), at the moment, and as I said above, I don’t really wear it much at all. I have a feeling that version (3) would have me twitching and flailing like I was having a fit, until I got used to it. Also, it must be slightly heavier.
If you type "cosmesis" into a search engine, it will head you off in the right direction. The major player in the game in the UK is a company caller RSL Steeper. http://www.rslsteeper.com
Brits, and people looking for help on the European side of the pond can find extra support and advice at http://pub28.ezboard.com/badultswithbra ... usinjuries
Best wishes whatever you choose.
Ps. For the original thread, go back to page 6, 11 June 2003. I did add to another enquiry about this topic, but I can’t find that reply any more.
It’s now 1 year since I had my right TBPI arm amputated. The quality of my life has improved beyond belief. I feel liberated.
Clothes are easy to get on and off, and when I go scuba diving, it is so much easier to get the heavy kit on and off. The same with a rucksack. When I ride my trike, I do not have to spend 5 minutes or more trying to force my hand down the sleeve of my leather jacket or waterproofs (well I do live in soggy Britain). Driving a car, the arm does not now suddenly slide off my lap and get caught between the seat and the door (between the seat and gear lever for those of you who drive on the wrong side of the road !)
I now have more choice of clothes. Elasticated cuffs are no longer a problem. I can wear short sleeved shirts without turning my BPI arm into a piece of crispy bacon ( occasionally we have sunshine too, in the UK ).
Swimming is now much easier now that I am not dragging around an anchor. Before my BPI, I used to really love swimming fast, then suddenly I didn’t enjoy swimming at all. Now I’m starting to enjoy it again. I’d like to be able to get out of the slow lane, and overtake all the old ladies who seem to only use the pool as a liquid social club, so as my fitness builds up, I have a target. The middle lane !
Best of all, my hand no longer gets icy cold in the winter. Before the amp, I used to dread winters, even the British ones which are not particularly severe. Now I have no problems at all.
Don’t even think about amputation until you’ve given your body a chance to start repairing itself. Amputation WILL NOT remove the pain. You need to deal with the pain first and then, and only if there is no recovery after say 4 years, discuss amputation with your consultant. I don’t want to sound like a schoolteacher here, but amputation is the final solution, and may not be suitable for everyone. I’d had a trauma BPI for 5 years, and there was no chance of recovery, even after umpteen operations, so my consultant agreed that amputation might be a good decision. Some people regain a lot of use after 2 or 3 years, and the pain can decrease considerably.
I found that I weaned myself off any type of painkillers as soon as I possibly could, and battled with my mind and body to fight the pain. After my BPI, I vowed that I would not live my life on pills, and fought through the pain. Every time I had really bad pain, I used to ask my body "is that the best you can do? That's pathetic. Come on, try to really give me pain. Sometimes my body would oblige, and the pain would take my breath away, but after a while, my body said, "OK, you're a nutter, I can't fight you." Three years post BPI I was not taking any pain relief. When I went into hospital to have my broken leg repaired I took no pain relief. And when my arm was amputated, I took no pain relief, except one afternoon when I had a paracetemol (I think they’re called Tylenol in north America). I've built up my tolerance, like those people who enjoy fighting, except I'm fighting 24 hours a day against my own body !
I am not trying to convince anyone to go down the same route. It’s a personal choice for each and every person. But if you are in a situation where there is no realistic hope of recovery, and the subluxation creates pain, then it is something to think about. I don’t regret my decision.
Some people are concerned about the visual implications of losing an arm. Personally, I feel happier with no arm than with a withered arm and clawed fingers. I have tried wearing a false arm. It is only cosmetic, but even so, with a few locking positions for the elbow, and a small amount of grip in the hand, I should have been able to do more with that than I could with my BPI arm. As it happens, it’s more trouble than it’s worth, putting it on, pushing it down through shirt sleeves, taking it off, etc. I don’t wear it much at all, but at least with a false arm I have the choice.
Francine asked me for more information about about false arms. This was my reply:
I am no expert, but there are 3 main types of false arm:
1) Electronically triggered by nerve impulses. These are mainly still in the research and development stage, and are in any case, prohibitively expensive.
2) Cosmetic. Basically a latex glove shaped so much like a hand and arm that you cannot tell the difference from more than a few inches away. This has a lightweight aluminium core that has a hinge at the elbow. It is moved into an appropriate position by the other hand, and locked into position by a little spring loaded button. The whole thing is attached to a hollow form made of lightweight plastic which slides over your stump and is held on with straps across the chest.
3) A mechanically operated arm and hand. This is strapped over your stump again, and is controlled by a clever system of levers, pivots, springs, hinges and cords which are in turn controlled by movement of your unaffected arm and shoulder. It sounds bizarre, but can be very effective, by all accounts. Most of the mechanical gubbins is hidden inside the false arm.
I have version (2), at the moment, and as I said above, I don’t really wear it much at all. I have a feeling that version (3) would have me twitching and flailing like I was having a fit, until I got used to it. Also, it must be slightly heavier.
If you type "cosmesis" into a search engine, it will head you off in the right direction. The major player in the game in the UK is a company caller RSL Steeper. http://www.rslsteeper.com
Brits, and people looking for help on the European side of the pond can find extra support and advice at http://pub28.ezboard.com/badultswithbra ... usinjuries
Best wishes whatever you choose.
Ps. For the original thread, go back to page 6, 11 June 2003. I did add to another enquiry about this topic, but I can’t find that reply any more.
Re: Amputation as an option
Yes..I've been seriously thinking about amputation since Jacko had his...he looks so much happier and healthier in many ways than he has ever done, and I too am sick of carrying around this dead weight that is of no use to me whatsoever...BUT...and it is still a big but....after 10 years of 'old flaily' I am so used to it being there I just don't know how I would react after the 'chop'...for instance, I am always fiddling with the fingers, bending them etc etc and don't even realise I'm doing it; it's a bit like a worry stone, or the rosary that my ex-mother-in-law was always tinkering with in idle moments. It is just always there and gives me something to do; seems strange I know, but I can't think of any other way of describing it. I would miss it a lot for that reason...maybe...
The other thing that worries me is what about the pain? I know full well that amputation will not cure the neuropathic pain that we all know well, but when I am in pain, one of my tricks for a 'cure' is to rub and massage the spot where it seems to come from and in this way, I can usually bring it down to a more tolerable level. What will I do if the arm is gone? when there is no place left to rub? Will I not be able to control the pain so well? How would I be able to 'rub' an non-existent arm?
I am also wondering if this may be a gender thing too; I know quite a few people who have elected to have an amputation, and they are all men. I personally do not know any women who have chosen to do this. O.K. I know the number of men with a BPI is probably greater than women, but even so, I thought by now I would have come across at least one. It might be a bit of a self image issue, or we may be more aware of our arms and particularly our hands and fingers..as women, many of us manicure our nails, paint them, use hand cream, wear rings, bracelets etc etc. Men wear jewellery too I know but not generally or traditionally as much as women. We are always bombarded by ads and magazines, and from an early age by our mothers to take care of our hands and make them look as good as possible...perhaps I am still in this kind of image trap; although my hand is useless, it has never clawed up and looks almost normal at first glance. If it was no longer there, suddenly, I would stand out in the crowd..I just don't know how I would adjust to that. Pretty quickly...I think.
After all said and done, perhaps I am not ready for the chop yet although in practical terms it makes perfect sense...in emotional terms, I don't think I am quite ready yet...and maybe never will be. Who knows.
The other thing that worries me is what about the pain? I know full well that amputation will not cure the neuropathic pain that we all know well, but when I am in pain, one of my tricks for a 'cure' is to rub and massage the spot where it seems to come from and in this way, I can usually bring it down to a more tolerable level. What will I do if the arm is gone? when there is no place left to rub? Will I not be able to control the pain so well? How would I be able to 'rub' an non-existent arm?
I am also wondering if this may be a gender thing too; I know quite a few people who have elected to have an amputation, and they are all men. I personally do not know any women who have chosen to do this. O.K. I know the number of men with a BPI is probably greater than women, but even so, I thought by now I would have come across at least one. It might be a bit of a self image issue, or we may be more aware of our arms and particularly our hands and fingers..as women, many of us manicure our nails, paint them, use hand cream, wear rings, bracelets etc etc. Men wear jewellery too I know but not generally or traditionally as much as women. We are always bombarded by ads and magazines, and from an early age by our mothers to take care of our hands and make them look as good as possible...perhaps I am still in this kind of image trap; although my hand is useless, it has never clawed up and looks almost normal at first glance. If it was no longer there, suddenly, I would stand out in the crowd..I just don't know how I would adjust to that. Pretty quickly...I think.
After all said and done, perhaps I am not ready for the chop yet although in practical terms it makes perfect sense...in emotional terms, I don't think I am quite ready yet...and maybe never will be. Who knows.
Re: Amputation as an option
I think in many ways, apart from the emotional thing, you have to weigh up whether a flail arm is causing other problems not immediately connected with pain, etc.
I'd recently taken up welding, and I did not want my flail arm getting in the way when I'm dealing with very high electrical currents, and extreme heat.
I've also developed a bit of an interest in DIY. It's far easier to use electrical tools, saws, and other tools, and I can push against things with my right side now, where I could not with a flail arm in the way. I had to weigh up not only whether to have the chop in the first place, but also WHERE to have it amped. I needed SOME shoulder remaining from which to hang my scuba kit, but too much remaining would be a pain.
Lizzy is right, I am happier without my arm, but that is not entirely the full story. Even after the amp, I was not all that happy, and had to be treated for PTSD which had developed over the 5 years since the BPI. I had thought that the amp would be the end of my worries, but what it actually did was to show me that, whereas I couldn't improve much more physically, there was a lot of work still to be done mentally.
Having been through the mental AND physical processes now, I am comfortable with who I am, the way I look, and what I can and cannot do.
I'd recently taken up welding, and I did not want my flail arm getting in the way when I'm dealing with very high electrical currents, and extreme heat.
I've also developed a bit of an interest in DIY. It's far easier to use electrical tools, saws, and other tools, and I can push against things with my right side now, where I could not with a flail arm in the way. I had to weigh up not only whether to have the chop in the first place, but also WHERE to have it amped. I needed SOME shoulder remaining from which to hang my scuba kit, but too much remaining would be a pain.
Lizzy is right, I am happier without my arm, but that is not entirely the full story. Even after the amp, I was not all that happy, and had to be treated for PTSD which had developed over the 5 years since the BPI. I had thought that the amp would be the end of my worries, but what it actually did was to show me that, whereas I couldn't improve much more physically, there was a lot of work still to be done mentally.
Having been through the mental AND physical processes now, I am comfortable with who I am, the way I look, and what I can and cannot do.