United Brachial Plexus Network

My questions for TBPI only are:
What is the extent of your injury?
How long have you had your injury?
How old are you?
I am asking this because I want to know how this injury will be when I am in 50's and 60's. I am going in to my 40's and I just feel its hanging more and more out of socket. I was told by doctors that I will want my shoulder fused in the future. I noticed my thumb locking and my fingers get swollen more often.
I guess what I am asking is, does it get worse? And what do you do or take to help? I am not big on medication. I don't function very well and I get sick easily taking ANYTHING.
Kath
Chicago
39 years old-21 years since my injury.
C5,6 and 7 avulsed

Hey Kath,
Im 29 now, and had my injury on the 26th may 07'.
my C5 ad C6 were affected.
i have had two surgeries, and now have both my brachiallis and bicep recovering...no delt as yet, and probably looks like i will need one more further surgery if my EMG test doesnt go well.
My humerous is definitely starting to lower.
i take oxcodeones when the pain gets too bad...and low dose antideppresants at night to sleep, or tamazepan...thanks for the advice scott!
further to this i take b complex vitamins and acetyl-l-cartenine as a supplement.
dont know if this is of any help..
but keep your chin up.

Same question I would really like to hear answers on.
Age 42, Injury 5 years, c5and c6 avulsion or equivalent of.

Like you my arm appears to be hanging looser on my shoulder, I feel like its going to fall off. I would prefer not to get a fusion as I use tricpes and my hand all the time and from what I can make out a fusion will limit some of this function. My atrophy is to the bone on my shoulder.

But lots here seem to have this injury for longer and don't have fusions or arms falling off but I think this is for people who dont use arm at all. Also, is the wear and tear of the joints so bad that one needs a fusion.

James-age 15, injured at age 11 in 2003, so 4 yrs. 8 months TBPI.

Extent of injury- c5&6 not avulsed but stretched and torn.
c7,8&t1 avulsed.
Phrenic nerve damaged.
No sensation or movement period, at time of accident.

Surgeries- at 5 months post accident, nerve grafting, some sensation back in places, twitching of 2 fingers. Intense therapy, e-stim and splinting done religiously. Fingers and hand still clawed regardless. Shoulder subluxed pretty badly.
2nd surgery- Trapezius transfer for shoulder stabilization. Helped some, not getting worse though. Arthritis has set in already. Helped with the weight of the arm. Still wears a neoprene shoulder brace. Its heat insulating so it helps with the pain alot. Fits snug, he never goes without it except to bed.
3rd surgery- 6 weeks ago, Gracilis muscle transfer with an interposition tendon graft from the FCR into the ECRB. Gets cast off today ! Well see how this one goes. The tendon was used so when he gains the ability to bend his elbow, his wrist will also pull up.
At this point, were not sure if anything can be done for his hand and fingers, a little more wait and see.
Severe burning in hand and fingers, shoulder pain, comes and goes so he doesnt take anything regularly, but does take ibuprofen and occasionally a pretty rough narcotic. Weve done our dead level best to try to keep him off medications unless its a dire necessity. He knows when to yell mom, I need something for pain, and then I know it must be pretty bad and untolerable because he dont like the meds either. If its not too bad, he can shift his focus and it helps. I guess as far as the shoulder goes, his neoprene brace has helped most of all. He has several, one for everyday.

Thanks for your responses!
However, I have had my injury for 21 years now and I am looking for people out there that has had their injury longer than that and in to the 40's. After "hanging" for 21 years I'm experience more and more pain and discomfort. My parents are in their 70's and they tell me they are starting to hurt all over and I can't imagine being 70; I feel I'm in my 60's already. Not all the time but there are days I feel that way.
Anyone out there with more than 20 years experience from a TBPI????
Kath

Kath, Im sure there are some out there somewhere, do you ever go to the UK site ? www.tbpi-group.org ? Probably some there, maybe Jen or Liz might know.