United Brachial Plexus Network, Inc.

Has anyone had their BPI arm amputated? I am seriously considering this procedure as I find after 6+ years of carrying this redundant baggage around my waist I now want to have some functional use, via prosthetics, from my inactive limb.

My main concern is the potential increase in PLP. I am aware that some theories suggest that OBPI has less prolonged PLP because of the psychiatric preparation the brain has to losing a limb as opposed to the instantaneous, no preparation TBPI. I feel that since I will now become effectively an amputee will the pain be as acute?

I am currently on the waiting list here in New Zealand for amputation. I have had my bpi for 24 years and like you have finally got sick of dragging the dam thing around and finding injuries on it I didn't feel happen.
I have researched the PLP thing extensively. Unfortunately most studies have been done on people who amputate immediately after trauma, not several years later. The pain many tbpi suffer is a form of PLP anyway and after discussion with a pain clinic we decided between us that as cortical remapping has already happened to me (which is why I get PLP) then it is not likely to get worse. BUT there are no guarantees.......

What I would say is every person I know who has amputated, without exception, thinks it is the best thing they ever did and does not regret it for an instant. I'll post on here when I get the chop to let you know how it goes but NZ's health system isn't the best in the world (only 4 million people here, not enough tax dollars) and I'm in for quite a wait as I don't have insurance. Gives me time to come to terms with it-I'm aware the biggest effect is likely to be emotional, bereavement, grief. This arm is the baby I've kept warm and dry for 24 years, always sitting quietly on my lap. I'll miss it in some ways....but I'm looking forward to the freedom too!
Let us know what you decide Declan :0)
Jen NZ

Declan, I have posted this on the TBPI UK site as well. There are a few amputees around there so it might be of some help to you. Let us know how you get on with this!

COurt xx

Thanks Jenny & Court, I think I've already made my mind up, I'm having it cut. Which, by my reckoning should be about February/April next year. We're fortunate enough here in Northern Ireland to have a brimming pool of specialist orthopaedic surgeons as a result of our checkered past, so they're telling me 2/3 months after my next snowboarding trip to the French Alps. Ohh! I can't wait...

I'm a pretty active guy and I find my flailing limb a total incumberance. I can't even seem to make or find a sling that comfortably holds my arm without bouncing or sagging while exercising. Yeah I know, whine, whine, whine... It's just, I'd rather have a useful prosthetic than a useless limb.

I'd thought that it may have been a more common request amongst us lot than it seems to be, even my consultant is rueing my decision simply on the grounds that he's never done or heard of it before, kinda brings them down to our level a bit, you know... having no point of reference and you stumble into your choices while questioning the seemingly unknown.

They keep throwing the 'increased pain' possibility at me. I'm figuring, "how in hell blazes, could it..., ever... be as bad as it was for the first year?", those early days are as hard to describe as trying to tell your wife why you love her after all these years without repeating yourself into a corner.

I do think that there's a strong possibilty that the pain will increase, but this time around I've a much bigger arsenal of tricks of my own to pull against it. Back then, I would have been wound tighter than a fishing line pulling a 200lb Marlin in the wake of a powerboat and grinding my teeth flat, but with the information available here and a host of compadres at all stages of recovery, I'm more mentally prepared for it.

I'd really like to get in touch with someone who has had the chop and lived to tell the tale though, so if you get any replies from the TBPI UK site please pass them on, thanks.

Declan

Declan, I got this response on the UK site from YEti....

THE PAIN DOESN'T GO AWAY WHEN YOU AMPUTATE
Had my arm amputated after about three years of waiting for something to improve (which never happened) and haven't looked back since. With the artificial arm I can shoot (clays and game on a regular basis) I still ride (building trike...taking forever) and am member of NABD (LAPSED) Live a full life and don't miss being able to play the violin (never could beforehand anyway...lol) If you've been told, and you're 100% sure that the arm is dead, then I have no hesitation in reccommending amputation. BUT it's a no-going-back type of decision so you've got to be sure (I understand that you got contact with Courtney, so if you want to get more in-depth, she can give you my MSN MESSENGER ID and we can talk more about it if you'd like. (there's not such thing as not-enough-information) I've had phantom pains for around 30 years so amputation is not a solution purely for pain relief. Its a lot more complicated than that, and I can explain the theory of that to you too, if it'll help.
Yeti
p.s. PLP?

I hope this helps a bit! This guy is great, live in the UK but originally from Scottland! Feel free to mail me and I'll give you his contact info!

Also check out http://www.tbpiukgroup.homestead.com/index_1.html Thats the UK site, they are great peeps there too! Get at me and I will gladly share info with you!

COurt xx

Hi Declan,

I'm 22 years post chop. Had it done and never regretted it. As my Kiwi friend says, it was a relief to get rid of it.

No change in the pain, The nerves don't care if the arm is gone or not.

I never used the hook as I do not have enough motion to operate the arm.

Still, very active: squash, weight lifting, snowmobiling, cycling, etc.

good luck and feel free to email me: hlvandelinde@yahoo.com

Cheerios,

H

Here is another from th UK boards....

I dunno does it hurt ? Yeti lost his watch !!!!!!

Just meeting a few peeps who've had it done ( for their own reasons ) doesn't make it the right fit for you ?

Do you have a specific task or outcome you'd like to gain from amputation ? Your still gonna be cripped sans limb or not ? At the end of the day you'll still take off that prosthesis and be truly be one armed

Truth be told I was talked out of it by peeps around here...I was bound and bent that the chop was the best option by year 3....I'm not saying I won't consider it if I have problems when I get old but for now I can still use the arm as an assist hand or not.

Believe me Court I've given this subject ALOT of thought. I am a candidate for an amp just below the elbow....they'd be more than happy to nip it off and plug some apparatus of my choosing...As the guy's said " We aren't advocating it but we'd be willing to do it " .............

Anyhhoo it's your choice,

Mikey

How do you use a prosthetic arm if you have full avulsions and no muscles to power anything? Are they body powered arms with cables around your back?

In the case of a full avulsion where there is no longer any connection to the brain and zero EMG signals in the arm, is it possible to find a prosthetic that is useful and not just dead weight like the flail arm was?
Currently debating whether amputation and prosthetic arm would be a good alternative to a flail arm.

Thank-you for posting
I get a wet noodle for a arm , from birth erbs
How a doctor would take a falling arm off , without a referral to a doctor who treats our limitation, Tick Me oFF
Please get a doctor who treats our Falling arms ,
To Date many use Dan sling for a Noodle arm
Just Thinking, by past post
There were many pictures , waring Dans sling and many use it for a Falling arm and hand,
To Rich and Dan ,
I wish I new how to pull up the past post , using Dan sling.
Fact, Dan sling, well it resolves many issues for a Failing arm and the wet noodle effect
Just thinking
Tom