United Brachial Plexus Network, Inc.

I'm interested in hearing from anyone who decided to have their arm amputated following a BPI, especially if you had avulsed nerves.. How does phantom limb pain compare to the nerve pain from the injury? Does it hurt more or less? Has the phantom pain gotten worse over time? Do you take the same meds for it that you were taking for the nerve pain?
Sandy

Hi Sandy
I am in the process of scheduling an amputation of my bpi arm after 24 yrs. The pain many of us suffer is actually phantom limb pain even before we amputate, I don't think my 'electric shock' or deep fat frying pain (do these sound familiar?) will go away with the amputation. BUT I know my phantom pain is often set off by my hand getting cold so hopefully with no haand to get cold, the pain might be a bit less.....the joint and muscle pain will almost certainly improve so here's hoping :0)Every single person I have met or emailed who have amputated has said it was the best thing they ever did, even though some do still have the pain.
I'll keep you posted as to how things go....

Speaking as an amp myself, I agree with what Jenny has said.

The amp certainly eliminated the cold hand sydrome, and the subluxing pain. It also eliminated the ache I was getting in my neck and spine, due to lugging round the flail arm. I always found that other pain would trigger nerve pain. Also being tired triggered nerve pain. Hefting that arm around was very tiring, and since it's gone, the benefits to my general heath and well-being have been immense.

I get phantom pain occasionally, but it's nothing like the scare stories you hear about from some people (mainly people who've read about it, or seen it on the telly, and haven't a clue what they're talking about).

Jenny
I wish you well with this surgery and hope it brings you release from all pain. It was a long hard decision for you and I am glad you are comfortable and ready to move on. Please keep us posted
Kath

Please do let me know how it goes, I'll be thinking about you.
Does cold cause the pain or does the pain cause you to tense your muscles, reducing the blood flow to the hand so it becomes cold? however that works, living in North Carolina, I don't have too much trouble with cold hands.
And I've been told by all of the various OTs and PTs I've seen never to leave my arm unsupported, so I wear a Wilmer shoulder orthosis (read about it on this message board, hunted down a US distributor, bought one and had it modified to fit me). A bit of a hassle, but not too uncomfortable.
However, I've only been dealing with this for 2 1/2 years and I'm already worn out. I really admire your courage.

Thanks for your comments, Jacko. I could use some of that benefit to general well being that you experienced.
A factor that seems to affect my pain level a lot is the barometric pressure: when the barometer goes down, the pain goes up. Is that true for you, too?
I am so discouraged. Between the pain and the lack of energy from the meds, I feel like my life is going nowhere.
Help!

I can speak for both nerve pain from 5 avulsed nerves on left arm and phantom pain from right arm and shoulder being pulled off. I can tell you that when the accident first happened I had no pain what so ever in bpi arm and horrific pain on amputated side. 3 wks later the bpi arm began it's rein. Almost 2 yrs down the track with the help or 3200mg Nurontin a day, the amputated side has settled enough to live with but I can't say the same for the bpi side.
I know it's worse when my hand gets cold, when it is humid or rainy, and especially when I haven't had my exercises and streching done on the arm and fingers, but sometimes just no reason at all why it just unbearable. My shoulder and neck pain is a big problem if I don't rest my arm on something regularly, especially as I am heavy on one side and light on the other.
I considered amputation on bpi but it is my only hope of an arm and the surgery I had (connection right hand nerves to left bpi is starting to get results WORLD FIRST OP) so I guess I'll hang in a bit longer.
Can someone give me a web site for the sling mentioned on previous page.
How difficult was the recovery after the op and where exactly did the take the arm from Jenny? Do you have any shoulder movement?

I can talk about the difference between nerve pain from full avulsion of 5 nerves on left side and phantom pain from right arm and shoulder being torn off. What I can tell you is that when I first had the accident the amputated side was terrible with phantom pain and I didn't actually have any pain in left bpi side for the first 3wks. It then began it's rein!! The nerve pain on the bpi just gets out of control sometimes. Almost 2 years after the accident and with the help of 3200mgs of Nurontin a day the amputated side has settled down enough to live with, but I can't say the same for the bpi side. Sometimes it just gets out of control. I know having a cold hand makes it worse, being exausted does, drag fromthe arm does if I don't support it enough, humidity and rainy weather does and if my exercises and stretches don't get done daily the pain gets worse.
I considered amputation as I struggle so much with the drag on one side and especially being so out of balance and light on the otherside, but I have had hrs and hrs of nerve surgery to hook 4 of my right hand nerves (all still attached to spine) to left arm around the front of my neck WORLD FIRST SURGERY and I have started to get some results so I just have to be patient and hope for anything as it is my only arm and hand.
How was the recovery after the op Jenny and has it relieved any nerve pain? Where did they take it off from and do you have any shoulder movement?
Also can someone give me a web site for the sling you spoke about.

Hey Gayle The shoulder orthosis I mentioned is at http://www.wbmt.tudelft.nl/mms/wilmer/wdo-1.htm. As I said above, because I'm small my OT modified the arm support - I could send a picture if anyone needs.
Sounds like you've been thru hell. I hope you continue to achieve results from your surgery.
Sandy

More info about the Wilmer Orthosis on the TBPI group website with pictures of one of our group members using it...

http://tbpiukgroup.homestead.com/rekha_arm_splint.html

LizzyB http://www.tbpi-group.org