United Brachial Plexus Network, Inc.

I was about 12 a big group of doctors were out there and I was on stage to look at me. My Mom had no Money and she was trying to help me so I hope for a cure and there was no help But There was help for a Child with a club foot. I gave her a big hug and told her I was so happy for her.She told me that Tom they cant help your ERbs I said its Ok and that inpowered me for the rest of my Life.I am A Master Diver I am a Semi Driver and at 51 I am dealing with a Discrimition case I cant even Talk about becase its still investigation.I have over come so much and I am Trying to help you the best I can So here I am can I help you?

that would have been hard as a 12 yr old Tom. I too had to face a panel of doctors like I was a freak in the circus, to be told I should amputate my useless arm. I told them where to shove that suggestion :0) Mind you, all these years down the track I'm starting to wonder if they were right.....I've finally got to a place where I am thinking of amputation. I have several great friends who like me have flail arms or have already amputated, between us we ride horses, climb mountains, waterski, ride motorbikes, bring up families and one amputee even dives like you Tom, we generally live life the same as anyone else. Except we get much more sense of acheivement than 'normal' people.
Hope the obpi kids get some inspiration from you Tom :0)

amputate I really hope you dont go that way I know the limities on usage are low in are arms. I even knew one person that had a baby arm and hand .It never grew! he had to put a prostetec arm on to use his left arm and with his baby hand he pulled on a lever in side the arm to close the hook he told me that when I get older I am going to get a doctor to take my baby arm off I told him If you do that how are you going to close your hook you have learn to do the best that you can like me and your learning more It all about how people look at us and if we disable are self more that will not stop people looking at us and will only loss again .That what I told him then and If I saw him today I would say people may look at us so what I dont care Iam not going to hide nor go away, Iam not going to think about my disiblity ever and most of the time I dont I am bless with alot of friend and a will to over come what I can and Help just like others on this board just like you.Please dont dispare its bad to have little use but if you do it who really is the losser. please dont think about having your arm taken off please.YOUR FRenid TOM

Thanks so much for the concern Tom, and the kind email :0) Don't worry, I'm still in the deciding process about amputation. If I do decide to go ahead, I won't lose any function at all, because I don't have any to lose! All I will lose is the dead weight that's been hanging there all these years. My nerve damage was pretty extensive, as well as multiple fractures so since January 1980 when I got my tbpi, I've had no movement or sensation in my lower arm at all, and altho I can move my biceps now, its the ONLY muscle I can move so not much use on its own. Amputating the lower arm would probably help me use the biceps more. Quite a few tbpi are like me and get little or no recovery of sensation or movement in their bpi arm, and quite a few of them amputate because the weight of the arm does eventually cause spinal problems. In my case, I'm finding that the neural pain flareups are getting worse in the winter when the cold in my hand sets it off, I think the multiple breaks are sensitive to the cold too (6 breaks plus all my hand bones broken) & I'm hoping that amputation might stop that. I do live a very active lifestyle and I am finding that the arm really gets in the way and gets injured easily because I can't feel it and unless I'm looking at it I have no idea where it is. I have even stabbed it with the fork when gardening without feeling a thing, it was only when I saw the blood on my sleeve that I realised.....that's dangerous.

PLEASE don't worry, I'm not desperate or depressed, I came to terms with my flail arm a very long time ago and have totally accepted life with one arm. I have done every single thing in my life with one arm since the day I got my tbpi and it's just the norm for me. After the initial shock of losing the use of my dominant arm I got over it pretty quickly, I was in a bad accident and every day I give thanks that I'm alive at all, I've been very very lucky. Amputation just seems the logical next step-after all, if I'm having probs keeping the arm warm and protected now as a healthy 44 yr old, how much worse could that be as a less active old lady with even worse circulation problems?
When I first heard of peeps amputating flail tbpi arms I too was shocked and horrified, now I'm beginning to see why people do it. I will wait for at least another winter before I decide, its a case of not only me accepting what may need to be done but my family too. It's a big step but I'm in the process of dealing with that right now.
Thanks again for your kind concern Tom, I'll keep you posted :0)