United Brachial Plexus Network, Inc.

I've been living with this for 5 years on June 23rd '05. My question is has anyone had their arm amputated? I know I won't recieve anymore surgeries. This is a result of me being 20 years old and having over 15 surgeries in my short life and if I can help it I won't have anymore. I have contemplated this decision in my head for a year or so. I have come to the sad conclusion that no matter how many surgeries I have I will never have my arm back the way it was, and to be honest I don't want my arm back any other way. So in a harsh reality I have come to the conclusion that I so sadly believe I need to amputate and move on with my new life without my arm. I love the memories that it has given me but to be blunt thats all it is, a memory. I have a few questions to anyone who has amputated and I would really appreciate the time if anyone could give me some answers. Any feedback from anyone would really be appreciated.

Hey Joe, I TOTALLY respect this decision! I do not have my arm amputated but Henry has, he posts here now and then but I will ask on the UK board as well and see if I can get a few of them over there to reply to you here. Yeti and Jacko have had theirs done and I think JennyB has been thinking about it. Yeti and Jacko are very pleased with it! Check this thread out, it was started on the other board too....http://p072.ezboard.com/fadultswithbrac ... 1168.topic

COurt xx

Hey Joe,

I've written about my decision on several threads. Be happy to talk to you about it, email or otherwise.

All the best,

Henry

Hey N,

I would just note that because you are young, you might want to hold on to it just because there most certainly will be some sort of stem cell based rejuvination before you are 30.

I agree that it's likely some time down the road there will be the option of reattaching avulsed nerves (a la the work already being done in England & Spain).

But my question is, for those who have had the injury long enough ago that muscles have atrophied - even if the nerves began to work again, what would they connect to?

Dear Guest...my thoughts exactly. Without almost totally replacing the atrophied muscles in the arm, any 'new' nerves wouldn't have anything worth attaching to.

Don't want to appear to put a downer on the previous posts about stem cell research, but it will be years before they even have clinical trials on animals, let alone humans.

As far as I know, the stem cell researchers are concentrating more on developing this for a cure for other conditions and injuries such as motor neurone desease, and spinal injuries. Unfortunately, due to politics, lack of money for research etc etc a 'cure' via stem cell engineering for a TBPI is way off in the future.

Personally, I'm not holding my breath.

Lizzy B

Lizzy,
I've been corresponding with some sci folks about the Dr. Huang operation going on in Beijing and one guy who had been a complete quad for 28 years got some sensation and wigglng of toes, so I'm just suggesting don't write off your body's ability to heal however latent.

The only thing about holding on for a long time to see if medicine catches up is that the actual weight of a flail arm hanging off your body for years does damage. I really wish I'd had mine amputated in the early years. I'm now 25 yrs down the track with a severe and unavoidable scoliosis from the unbalanced body posture. It isn't harmless to have a flail insensate arm. I do believe miracles can and do happen, but given the choice again I would amputate ooner rather than later.
This weekend I have sustained a massive bruise on my bpi arm and a cut, I have no idea where or when this happened. It's become a real liability and I'm terrified of it getting infected if a cut happened without me noticing.
Only you yourself know when it's the right time to amputate, if ever. I do wish I had been able to talk to some long term sufferers before I decided against amputation years ago, and I'm on the waiting list now to have it done as soon as possible.
Jen NZ

I would say that once you know in your own mind which way you want to go, the question-and-answer time is just about over. Everybody will have their own opinions, but its your body, its your life, its your decision.

If you are still at the "what if they find a cure tomrrow?..." stage, then you aren't ready.

If you are at the stage where you think the cure is years away, and waiting for it is a waste (as it is stopping you from getting on with your life)then you are ready. With this sort of attitude, if they find a cure in ten years' time, then you'll think of the ten years that you had freedom and liberation, not ten years that you should have waited.

Here endeth the sermon.

Good points everyone, and good luck Nothinstoppingmenow.