United Brachial Plexus Network, Inc.

Hi...I am nearly 9 years post accident. I have treated with my pain management doctor for 5 of them. I have had the SCS implant, which did not help my pain. My doctor says he wants to re-do it, I just don't think 're-doing' it for the THIRD time will help much. I have also had exploratory surgery and nerve grafts done that did not take. I currently take neurontin, effexor and lortab for the pain, which eases it, but I am never free from horrible, burning pain in my hand, and pains that shoot down my arm into my hand that take my breath.

I can do a shoulder shrug. That's all the movement I have ever had in the arm. An EMG done about 2 months ago has shown no improvement in 9 years. My hand is starting to claw, and my back and shoulder are breaking down due to the weight of the dead limb.

When I mention amputation to my pain doctor, he tells me not to do it, that I would just 'trade one pain for another'. I don't understand phantom pain, but my arm has been 'numb' except for the pain since my wreck happened. I do have feeling above the elbow but nothing from the elbow down. I don't understand how the two pains could be that much different. The way I see it, I think I could benefit from amputation in the fact that the weight will be gone. I feel my quality of life would drastically improve.

I know it won't get rid of my pain, but will it be worse, as my doctor has said?

Can the nerves that are damaged be cut to where there's no pain sensors left to 'get through'? Or if you cut one nerve, you hafta cut them all?

What is phantom pain? What does it feel like?

Anyone that has struggled with these questions, and found your answers through amputation or information, I beeeeg you to please respond.

And to my brothers and sisters who deal with this injury every day like I do, just believe that your injury happened for a reason. Mine, like many stories I have read about on here, is minor to what I could have been left with. I am a miracle...I totally believe that...and so are you.

Thanks 4 reading!!

Hi Amy,

I've been 23 yrs bpi and 22 yrs amputee. The amputation did not change the pain but it changed my life for the better. No dead weight, no pull on the shoulder. Like you, I can shrug but that's all. I play all kinds of sports, bike, swim, and do weights.

My pain is under control with methadone, and overall, I'd say my life is a good as I can make it.

I'd be happy to answer any questions if you want to call. Email me and I'll send you my number.

Henry

Hi Amy!

You have put up with far more than I ever would have! My accident happened in 2000 and my right arm was totally flail and numb from my shoulder down. Dr did exploratory surgery and let me know that my injury was so severe that no grafts or anything would help. They just told me to wait and see if anything would regenerate on its own. It didn't. I waited 3 years and then decided to amp. The dead arm was killing my neck & back! So 2 years ago the Dr removed my entire arm at the armpit. I have never been sorry! My pain never got worse. My neck feels so much better and everything else I do is so much easier.

I hope this helps you. You can e-mail me if you have anymore questions. I have pictures of the surgery site if you want to see them. I have the kind of long distance phone service where it doesn't cost me to call anyone in the U.S. if you want to talk to me you can e-mail me your phone number.

Prayers for you to make the best decision for you.

Susie

You're OK brother, though you are big time f---ed up. So am I. I am going for the no-chop, simply because there is no retreat. My arm is worthless, and I know it. I figure; keep it out of the way and life will go on. Dogs like us have no where to whine.
Onepaw

Thank you sooooo much for your reply to my questions. Amputation is such a hard thing to consider, a choice that I never thought I would have to make. I guess I always thought that my arm would come back somehow, but it hasn't and I need to do something. It is soo good to hear from people like you that have the same injury as I do, and faced the same decision. This site is really a blessing because people that have not gone through this, although trying to be helpful, just don't understand. Should I ask my doctor about methadone? 'Cause the lortab just ain't gettin' it!! Thank you again Henry for taking time to read n respond to my post!!

Thank you sooooo much for your reply to my questions. Amputation is such a hard thing to consider, a choice that I never thought I would have to make. I guess I always thought that my arm would come back somehow, but it hasn't and I need to do something. It is soo good to hear from people like you that have the same injury as I do, and faced the same decision. This site is really a blessing because people that have not gone through this, although trying to be helpful, just don't understand. I really would like to see your pics if you don't care to share them. Actually, I was in Gatlinburg on vacation about 2 weeks ago and saw a lady there whose arm was amputated to the shoulder. For the first time ever, I went up to her, introduced myself to her, and talked to her about what had happened and how she felt after having it done, you know, phantom pains and whatnot. She was very friendly, told me it was removed due to cancer, and that she did have phantom pains. She also said you have to learn to balance yourself afterwards. Is that true? Also, are you on any kind of meds for your pain? Thank you again Susie for taking time to read n respond to my post!!

Listen, I got mine off 2 years post. I had exactly the same deal-shoulder shrug. Phantom pain? You're already feeling it.I take 50mg methadone and 30mg restoril daily. I know about the dragging weight, rotating shoulder, always having the dead limb "there" in the way.
Speaking strictly for myself, the best thing I ever did was lose that limb. It did NOT hurt worse, and not having to deal with it made the pain easier to deal with. One less distraction.It's your call, but it was a blessing for me. And really, what the hell good is it? The truth is, they'll never fix it. It's nothing more than a big wart sticking outta your shoulder at this point. That's my opinion. Grendle

Hey there Grendle!!

You know, you really hit home with EVERYTHING you said! I have thought the very same thing for so long, but it helps to hear it from someone that's been there. I have even asked my doctor about the pain...the nerves in my neck were stretched, on the border of avulsed, amd it's just like SEVERE burning in my hand and forearm that I have no sensory feeling in whatsoever. So I have wondered, how in the hell can it get any worse!!! He has me on Neurontin, 800mg 4x a day, Effexor, 150 mg 1x a day and Lortab (hydrocodone) 10 4x a day. Sometimes on the Lortab I will need 4 or more, somedays 1 or 2 will do. It just depends. But the fact is, this arm was gone the day I got hurt and I've just delayed the inevitable, hoping for some miracle cure that's not coming.

Again, thank you for reading n responding...

Amy

Hi Amy,
I had a tractor accident in Aug 2002 and my right arm and shoulder were torn off and in my left arm I avulsed c5, c6, c7, c8 & t1. I can tell you that initially phantom pain was bad but now it is nothing compared to the tbpi side. That may be a different story if I was meds free, but still I can't see it ever matching the neuropathic pain. If it was only the phantom pain side I had to deal with, then life would be a lot more pleasant.
From reading posts about amputating the bpi arm, the pain won't go, but at least that dragging and weight won't set the pain off. I am so light on one side (no shoulder) and so heavy on the other it ends up making me lead towards the weight which can't be good for my spine or posture. I would like to have my arm removed because of the weight and how it dosn't allow me to be as active as I would like.(I have to keep stopping and resting my elbow on something to take the weight off my neck and shoulder) I have to think very carefully about this decision as it is the only arm I have. Perhaps future technology will one day be able to help us. Without arms I don't have much of a life although I am doing pretty well. I think I'll first have all the plates (3) and pins (21) removed and see if that helps the weight issue. I know it doesn't seem much but I have 2 different hand splits, 1 is 90gms and 1 is 140gms and I can definately feel the difference.
Anyway sorry to blabber on and hope this helps.
Bye
Gayle

had a severe BPI back in April of this year. I completely avulsed all 5 nerve roots, and I'm looking to amputate my arm. I saw a post you made on the UBPN message board, and I'd thought I would email you. Sorry to be so forward, but I'm pressed for time seeing as my appt. is next week with the doctor. I'm wondering, where is the best place to have it lopped off at? What are the downfalls of doing it? What is the recovery time from surgery? How long are you hospitalized? Are there any dangers to the surgery? Do you have a problem with ulcers or sores where it was amputated? What was the pain of the operation like? Any unforseen things I should look for when I do it?

I know for a fact I want to do it, I just want to get my facts together before I tell my folks I am doing it.(I'm only 23 :-/). Thanks for your time, and I hope to hear back from you.