United Brachial Plexus Network, Inc.

Hey susie I just realised what you meant by try to send a PM. I sent one to you too and just looked and it doesn't look like it was sent! Anyways below is a copy of what I sent.

Hey Susie,

Thanks for the reply. I actually live in the UK now since I am studying. I think PMing might be easier than phoning. My appointment isn't for a few weeks so we have plenty of time. Where did you get the amputation done? What was the recovery time like? did you notice an increase in pain? Its funny because I think i remember you posting back in 2002/2003 about getting the amp. I remember thinking to myself that I could never do that! I now cant wait to have the freedom. Now I think how much easier my life would be with it off. I think I accepted that this was the way my life was going to be awhile ago but I had a bit of an epiphany a few months ago and came to the realisation that I would gain allot and lose a little by being rid of the arm.

Cheers,
Andrew

Wifeofpain, thanks for your insight. Your husbands experience seems to be inline with what I have read with other BPI amputees.

Jeffery, I am in agreement with you. If I had the function of my hand I would likely not consider amputation. With only the bicep though the arm is relatively useless and I dont feel comfortable bearing weight on it because it is osteoporotic. I suppose my main concern with amputation is that it will increase the pain. The pain has dramatically improved over the past three years and the last thing I want to do is be set at square one again. I suppose the doc will be able to offer insight into this though.

Cheers,
Andrew

Hi Andrew,

Since you're in the UK, have you spoken to anyone from the TBPI Group there? They're a registered charity and have get-togethers at different times and places I the UK. Their website has articles and links to other sites (which is where I found this one). Worth checking out, since you live there. KT

Hey everyone,

Just an update: I had my appointment with prof Kay in Leeds. He suggested I consider a fused shoulder with a below elbow amputation. The thought with this being that with a fused shoulder and the strong bicep I would have some shoulder/elbow movement and with a prosthesis I may be able to get some useful function out of it. To be honest i'm not really enthused by this idea. I have become so one handed that I dont see me using this in my daily life. It would have to be a fairly advanced prosthetic. Also with a fused shoulder I would be more vulnerable in sports and athletics which is the opposite direction I want to take in this. Nonetheless I will be having a joint appointment with the prosthetist and Kay to see what is out there in the way of prosthetics. It is good to explore all options as I know this is a one way road once I go down it. Plus it has the added advantage of if/when I do get an amp mid humorous then I will know what prosthetics I may be able to use. Will keep everyone updated .

Cheers,
Andrew

Wifeofpain thanks for the suggestion - I'm already signed up!

Hi everyone,

I'm new to this site. I have been looking for a place like this for a while now. Glad I found it!

Thank you for all the responses on this thread. I too have been contemplating the idea of getting an amputation of my left arm. I still have some thinking to do about it. I am leaning towards getting it cut off at my shoulder. In 2007 I was involved in a motorcycle accident (big shock there) that led me to have a bpi in my left arm. I have no movement or feeling from my shoulder socket down (except phantom pain). Over the last 5 years it has gotten to the point where my arm is just a nuisance in my daily life. I hate the fact that I have to babysit it and constantly worry about if I'm going to hurt it at all. I have already burnt my arm several times without my knowledge. It has prevented me from trying to do any type of sports or fun activities (if you know what I mean! ). Not to mention the constant pain I am in from wearing a sling most of the time.

I hope that I get things figured out.

Regards,
James

P.s. this place looks to be a friendly and supportive bunch.

Welcome, James.
Yes, this is a very informative site and has given me much info to research and talk to the dr & specialist about.
The decision to amputate your arm has to be well thought out (no sewing it back on!) but my husband found that his balance and mobility returned after his amputation. The 'sling-ache' and lower back pain also disappeared (with his arm). He finds it much easier to move around get up and down, in and out of bed, drive and participate in those fun activities . His arm; which would inadvertently hit someone when he turned around, if it wasn't in a sling, is no longer pulling at his shoulder or getting in the way.
We do know a man who, instead of wearing a sling, keeps his hand in his pocket, thereby securing his arm. Have you tried that? My husband did it a few times but the sensitivity of his hand was too great. By the time he made the decision to amputate (2008) he was ready and has no regrets.
Also, someone on this site knows something about athletic or sports slings. That might work for you too.
Let us know what's going on/what you're thinking, as you work out your decision.
All the best, KT

Andrew: might a fused shoulder increase your pain? Am interested to know what you decide regarding a prosthetic. My husband had one made but it is purely cosmetic and does not move, unless he adjusts the elbow. Because his pain is still so intense and the prosthetic is heavy and hot, he finds it adds to his discomfort so he doesn't wear it. He did meet someone with a carbon fibre one though, so all the best. KT

Wifeofpain wrote:Welcome, James.
Yes, this is a very informative site and has given me much info to research and talk to the dr & specialist about.
The decision to amputate your arm has to be well thought out (no sewing it back on!) but my husband found that his balance and mobility returned after his amputation. The 'sling-ache' and lower back pain also disappeared (with his arm). He finds it much easier to move around get up and down, in and out of bed, drive and participate in those fun activities . His arm; which would inadvertently hit someone when he turned around, if it wasn't in a sling, is no longer pulling at his shoulder or getting in the way.
We do know a man who, instead of wearing a sling, keeps his hand in his pocket, thereby securing his arm. Have you tried that? My husband did it a few times but the sensitivity of his hand was too great. By the time he made the decision to amputate (2008) he was ready and has no regrets.
Also, someone on this site knows something about athletic or sports slings. That might work for you too.
Let us know what's going on/what you're thinking, as you work out your decision.
All the best, KT

I understand that this is a one way surgery. I have come to terms with that a long time ago, actually as soon as I found out what happened after my accident.

How I feel about it seems to be the same as your husband. I find it gets in the way while trying to sleep. Showering is not fun in the slightest, and I used to love showers. It throws me off balance a lot. Getting dressed is a pain in the butt. The list just seems to go on and on for pros and not for the cons.

Unfortunately I am unable to put my hand in my pocket and secure my arm there. There is an extra condition that happened in my accident. The doctors have said that when I was thrown off the bike my arm swung out to the point it stretched and caused the main artery in in my arm near my armpit to collapse (an inch or two). As a result of this my arm does not get enough blood flow to circulate when my arm hangs. After a minute my arm starts to turn purple, so I need to wear a sling all the time. When in the sling it manages to circulate the blood enough to keep it pink. So that is another item on the pro side.

wow not only do you have to worry about your arm swinging around, you have to worry about blood clots also. on the board index, if you click on active topics, there is a topic a few items down called athletic arm slings. Dan custom makes slings. i have seen one of his slings and they are awesome. good luck on what ever you decide to do.

jmar wrote:wow not only do you have to worry about your arm swinging around, you have to worry about blood clots also. on the board index, if you click on active topics, there is a topic a few items down called athletic arm slings. Dan custom makes slings. i have seen one of his slings and they are awesome. good luck on what ever you decide to do.

Yeah I saw the post about his slings. I have been contemplating on getting one but if I do go through with the amputation it would be money wasted (I have little as it is).

i can understand that. i was thinking if it was going to be a year or so before you can have the amputation, you would have at least some comfort. but if the amputation is going to be within a few months or so, yes, it would be a waste of money. you might want to private message dan and se if he could help you in any way till you have the amputation.
all he can say is no. would not hurt to ask. i have met him in person and he seems to be an awesome guy to talk to. i hope the best for you in any way you decide to go.