United Brachial Plexus Network, Inc.

Sometimes I think I must be going off my head thinking of getting the arm chopped off, so it's to know there's others out there thinking the same.

I'm 23 yrs post accident so I have had plenty of time to think about it.

I am scheduled for mid September but may put this back to Oct/Nov as I am going to the USA on holiday early October.

In all seriousness I believe it will be the best thing for me. I no longer believe that there will be a cure for my arm after so long. I mean it's not just the nerves is it! It's the muscle, tendons and that have wasted away. Also broke my elbow recently and when the doctor looked at the xray he said it was like looking at a bone of an old person of 80. Osteoporosis I think it's called and that can only get worse. Also as I get older it feels worse.

As the operation gets nearer I question myself daily on whether it's the right thing. Not that I have many doubts, it's just that the lack of doubts bother me. I don't know if what i've just said makes any sense but I just can't find any good reason why I should keep the arm. The fact is it does me no good at all!

It's taken me many years to accept all this and I'm sure everyone will come to the right decision for them.

All the best.

Mike

mike, I know where you're coming from. I'm 28 years in and it's probly been about 5 yrs I've seriously thought about it. They offered me the chop about 3 years in, I wasn't ready then and declined. But now I think it would really help for all the reasons you say, and the dragging weight on my pine. So I saw a pecialist here and got it agreed but have been pushed off the waiting list twice. we aren't blessed with a health system like yours in NZ. You can knock the NHS but when you need it, they don't mess about. If I'd got the injury here it might be a different story, I've even thought of coming back to the UK for 6 months to get the chop and all of the other stuff you guys get free (yes, a health system immigrant!) but it's not an option, I have a life here I can't just drop for half a year.
If it makes you feel any better, I have yet to talk to anyone who regretted having the amp. All the best
Jen NZ

hello folks, my bpi was just past one year. i have had the nerv graft surgery and im 4 months out from that. i just wonder if this pain will ease up, im a 41 yr old dude and all the help i can get would be great.please call me if you would like to talk about it.423-876-0911

Subject: Re: Considering Amputation?

Hi, Tommy here. I would like to hear from those of us who have had the chop if it helps the pain at all.
I am 27 years post accident and still suffer regularly. If I thought it would help the pain I think I'd go for it, although according to the Doc it wouldn't. Personally, I can't help thinking that it would help a bit. I know we are all different, and what is good for one may not necessarily be good for everyone, but it would be good to hear from those who have had it done.

wow, it's been a while. Saw some new arm slings being made, same old pain questions, and a few amputee questions. That one is still hot on my to do list. In the mean time let me catch some of you up to what I have been up to.

Over the last few years I have been involved with a non profit called Adaptive Action Sports, mostly involving amputees and other limb loss athletess involved in alternative sports. I have been pretty active in the skateboarding side of all this and have won a few competitions. Last winter I made it to nationals in Copper mountain to compete in snowboarding events with about 25 other adaptive riders. I walked away on top, winning Adaptive World Champ. This summer I was invited to demo with my fellow riders (Amped Riders) in the 14 annual Xgames in LA. That was awesome to skate with some of my heros.
http://eastcoastaholic.com/Images/x_gam ... xgames.jpg

I tell you, it's been pretty awesome dispite the initial life changing accident. Anyway, look at some of the links below. If you have any questions, hit me at ocnsky@yahoo.com

I would love to know of anyone in my area, Outer Banks nc , that have had any luck with experienced surgeons in my area.

I shoot alot of photography (left handed ) most all these shots are mine.

AAS 2 week summer tour 07:
http://eastcoastaholic.com/adaptive8leg%20tour.html

AAS Summer XGames tour 08 +:
http://eastcoastaholic.com/aas_08_xgames_blog.html

Here is the winter 08 Nationals:
http://eastcoastaholic.com/aas_08_usaa.html

Here is the Adaptive Action Sports page where you'll find my outdated profile.
http://adaptiveactionsports.com/

Here is my personal Myspace if you want some pics from my two arm phase, haha....
http://www.myspace.com/eastcoastaholic

Hope this finds my old friends well....

Take care:
Rob

Hello to all! I'm sorry I haven't checked in for a while. I meant to check in more often in case there was anyone with questions about amputation. I will tell you about my situation and you can e-mail with any other questions you might have.

Three years after my accident when it was determined my whole arm was going to stay dead, I decided to have it amputated. I have never been sorry because it was always in the way, heavy on my neck & back, swollen, very cumbersome. I had no function in any part of my arm from my shoulder down. So there was no reason to keep any of it. My Dr. did a marvelous job.

I can't say that it changed my pain any. It still hurts the same way it did before the amputation.

I have heard several women talk on here about considering amputation, but I haven't heard of any women who have done it. I'm glad I did.

If anyone (male or female) wants to talk to me about amputation can e-mail me at: srogers@cox.net . I will be glad to call them if they want to talk. I hope this helps.

Susie Kaye

Hello there,

Well the news is I've just got back from a lovely holiday in Sunny Florida, to discover a letter from the hospital confirming I've to check in on the 4th of November, with my operation to take place on the 5th.

Well as you can imagine I've got mixed feelings! On the one side I'm happy it's going ahead and i'm sure I'll feel a lot better for it, but on the other hand it's becoming quite scary!

So I ask everyone out there to give me their thoughts whether you think it's a good idea or not? It would be good to hear especially from people who have had it done or thinking of having it off!

Now I am pretty certain it's the right thing to do but I have until they put me to sleep to change my mind. I'm sure I won't but would still like to hear opinions just in case there's something I've not thought of.

I will look to post again after the op to say how it all went and keep those interested in my rehabilitation and progress as an amputee.

Take care ye all!

Mike

Mike.
I'm having my left arm amputated on 11/21/08. I can't wait for this day to come. It will be the start of getting my life back. I had an auto accident on 1/2/07. Every day since has been encompassed by my arm. I have suffered severe pain, a skin graft, a failed nerve graft, a failed spinal cord stimulation, a motor cortex stimulation, a failed muscle transplant a drug regimen that would choke a horse, loss of my well paying favorite job and relentless stress on me and my family.
My arm is a dead lump that hangs in front of me that stresses my left shoulder that causes subluxation and strains my right shoulder when it is in a sling. I sleep with a pillow supporting my arm when I’m on my back. I also have a pillow on my right side so when I roll over my arm is supported.
I burned my hand on the toaster oven and didn’t know it till I went to therapy. I have spent a fortune on therapy on my arm and hand only to find out that I will never regain use of my arm.
I can think of no reason to keep this arm. I only wish it had been amputated when I had the accident. Perhaps I would still have my job. The sadness of losing the arm would have past by now. I would have not wasted so much stress, money and time trying to save my arm.
I expect the amputation to place me on the true road to recovery. I plan to get off the slew of drugs I’m taking. I’m even thinking of getting my first tattoo on my stump to celebrate my road to recovery. I’m 54 years old and feel I’m facing the start of my new life on 11/21/08.
I don’t see me having a moment of regret about this decision. It is up to you to make your own decision. I just thought you might want to hear my reasons.
Janelle

I am relatively new to this. My injury was August of this year and am just now getting out of hospital and trying to figure out what the hell to do. Thanks to everyone and please know my thoughts and prayers are with you all. I am so grateful to each of you already and don't even know people yet. I have spoken to Rachel who is an absolute doll and S. White is was so kind and thoughtful, altho much worse than I am. My left arm only is paralyzed and I'm right-handed so I feel fortunate. Amputation seems out of the question to me this early in the ball game but I know those who have lived with this terrible pain and fear of the unknown for so long, know best. All I can offer are my most sincere thoughts, hopes and prayers for you. Even in my initial perusal of the site, I hoped that others who suffer from this intense pain have a site so helpful and full of such wonderful people tho frankly, at this point, i can't imagine a pain greater than what we all suffer. It has changed me in every aspect of my life. Good luck and please know I so respect your courage. Suzanne Sommer

Thanks for the replies,

Jannelle it seems you have really been through it as have most of us and in some ways it's reassuring to know that there are other people out there that are going for amputation. It makes me believe it's not such a mad idea.

It's exactly a week now until mine and I'm counting down the days. Starting to get the butterflies!

I hope as you do that it's the start of a new chapter in my life where I can feel some freedom from the burden that is my arm.

I've said that I'd post after the op to try and describe how it all went and how I'm feeling but if there's anything in particular you would like to know before your big day, then don't hesitate to ask.

Take care


Mike