United Brachial Plexus Network, Inc.

It’s now 2 months 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 !

I have just been fitted up for 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’ll still be able to do more with that than I could with my BPI arm. I may not wear it much at all, or I may wear it everyday. At least with a false arm I have the choice.

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.

Best wishes whatever you choose.

Jacko I'm curious about something and please forgive my question but I don't know anything about these things...

How will the false arm will move? Do they connect it somewhere? and if so how is it removable? or are you just moving it with your unaffected arm? (closing a grasp, etc.)

Thanks in advance for teaching me about this. Is there a site where we can read up more about this that you know of?

I'm so glad to hear that you have so much freedom and that the choice you made is working out so well for you.

-francine

Francine, I am happy to answer your questions. That is what we are all here for. (I am trying to write this without using an apostophe: they did not seem to work on my last post).

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 am going for version (2), at the moment, and I will see how I get on. 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.

As far as websites, etc, are concerned, I lost all my information when my hard drive failed a couple of weeks ago. However, if you type "cosmesis" into a search engine, it will head you off in the right direction. Good luck.

Francine, I am happy to answer your questions. That is what we are all here for. (I am trying to write this without using an apostophe: they did not seem to work on my last post).

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 am going for version (2), at the moment, and I will see how I get on. 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.

As far as websites, etc, are concerned, I lost all my information when my hard drive failed a couple of weeks ago. However, if you type "cosmesis" into a search engine, it will head you off in the right direction. Good luck.

Thanks Jacko!

I just never thought about it until you mentioned it..then I realized..on tv I see people with the false arms and they are using it as though it's a real arm - gripping, etc. I always wondered how that worked..where it was attached, etc...how did it know how to grip... (isn't that so wierd that we take certain things for granted and remain pretty clueless?)

well I wish you the best and hope that this new avenue works for you...please update us and maybe send us a picture, too?

all the best,
francine

That's really good news. I'm in England too, East Yorks. Did you ask for your arm to be amputated?

Hi Zoe,
welcome to the club that nobody wants to be in. I’m glad you’ve found the websites so quickly. There are people here only too happy to help.

Re amputation: don’t even think about it 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’ve 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 hope this is the case for you. No, I hope you gain a full, pain-free recovery.

In the meantime, at the moment, the pain will be unbearable. Different things work for different people to reduce the pain, but one thing we all agree on is that you have to keep your mind active. The more your mind is thinking of other things, the less time it has to concentrate on pain.

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've built up my tolerance, like those people who enjoy fighting, except I'm fighting 24 hours a day against my own body !

I hope everything works out for you. Don’t forget to visit the site that LizzyB has mentioned. Lots of Brits there who can help you with stuff that is available in the UK.

Jacko, hats off to you for how you discribed your pain battle. you wrote exactly, to a tee, how I feel and cope myself. 3.5 years ltbpi. kudos.

Thanks Jacko, I've found your words comforting. I've mailed Liz

Hello my name is Tina and I have just registered on this site on behalf of my husband Duncan Manser (Manse) he sustained his BPI six months ago with complete avulsion of C5 C6 C7 C8 T1 and no hope of any recovery. He was what I call a "mid life crisis" biker ie 50+ and having fun which unfortunately resulted in multiple injuries and a near death experience. Luckily he is on the mend but he is desperate to have his arm amputated so I have been reading the message posted by Jacko with great interest. The Docs have suggested that he waits at least a year before they will consider amputation and I agree with their decision as he also sustained a head injury so his thought processess are a bit dodgy at the moment. I would like to know if anyone else apart from jacko has considered amputation and if they also found the same level of relief from the flail arm that jacko found. Also to jacko, did your consultant agree to amputation or did you have to "persuade" him/her. Were you able to find out any information ie risk factors, long term outcome, any research on the numbers of BPI that choose amputation as an option etc before you made the decision. Any more info on this topic would be really helpfull Thanks to all, the info on this site is excellent.