United Brachial Plexus Network, Inc.

Hi Traci
I'm so sorry for your feelings, I feel terribly for my own parents when I read posts like this. I was 21 when I got my tbpi, and I'm 46 now. I have no functional use of my arm and have no feeling in it, I don't even know where it is unless I look. I am now on the waiting list for amputation and truly, I wish I'd done it years ago.
For my whole adult life I have carried this arm around that needs looking after like a baby, it gets dangerously cold and I don't know, I get it caught in things and don't know, I cut it and only find out when I notice blood everywhere. It's like part of me has already died. My neck and spine are deformed from the dead weight. This isn't a poorly functioning arm, it's a dead thing. It's become alien to me.
Quite a few tbpi I know have amputated and not one of them regrets it. My parents were pretty freaked when I told them I had decided to amputate and so were my kids and friends. But it's not them who have to carry a literally dead arm around, it's me. Most of them are coming round to my way of thinking.
There are many threads about this on the tbpi message board that might help. I hope you come through this emotional turmoil and that Joe gets the help he needs to do what is best for him. It's not easy whatever happens. Sometimes amputation is the final step in the recovery process, however weird that sounds.

Please let us know how things pan out for Joe, all the best for you and your family.
Jen NZ

Traci,

I emailed you and Ryan did get your message.

Love and hugs,

Karen

Traci...I'm so sorry for the emotional turmoil you and your son are going thru...this injury really sucks at times, well, all the time really....

I am just guessing this, but has the Dr in question actually refused Joe's request for an amputation? (forgive me if I'm being a bit thick here..)If so, then I find that quite incredible.

If thats what he did, then what reason did he give? Please feel free to email me liz@tbpi-group.org if you don't want to post such details on here. My only suggestion, not knowing what the Dr said, is find another Dr who is more sympathetic and will listen properly to Joe's requests and the reason why HE personally wants this.

I agree with all that Jen has said...I often wish I'd have had an amputation years ago.

Hope you both are feeling a little better. I know it must be hard to find the right things to say sometimes...all the best to you all...

Lizzy B

traci, hey its deb no we are still in IL and i am very sorry about what you and joe are going through email again if you need to talk i'll give you my # again


deb and jared

Hi Traci, my oldest daughter, only last night, hooked up her computer to the internet, having been home for 2 weeks already.

When I read your post I wanted to cry with you. It is so hard being a mom. Don't have any words of wisdom. I do wonder why the Dr said NO. Could it be your sons age?

At age 17 my middle daughter wanted surgery to correct a physical problem (it was also medically necessary) and the doctor wanted her to be older before he did it. She is now 22, soon 23, and she did get the surgery, only later from that same doctor.

CARE Angela