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Lefty

Nerve Cutting!!!

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Has anyone had there nerves cut because they are balling up inside them. My Dr. told me that was my problem. Phantom limb pain getting much worse. :( I have slept a total of 12 hours since Sunday night. I think I have worn my TENS unit out.

Not getting any sleep is killing me, Work all day then stay up all night wired up to a TENS unit!!!!

All opinions appreciated.

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I have afriend who had one of these neuroma things. It was removed during a revision for other reasons. End result for here was very good.

ED

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:rolleyes:

Hi

I take Gabapentiin.I was also told by a Dr that if I press my finger tip's on each hand together that it sometimes control's the nerve pain I tried it a few times and sometimes it work's you put your hand's in front of you and press your finger tip's on there opposite number and just hold them there it might help it might not but it's worth trying.My pain's are in a AKA. Stump.

Best wishes Pat.

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Hi Lefty,

I'm in exactly that position now. I lost the calf muscle in my left leg-as a result they transplanted my lat from my back. Now my nerve from my thigh has grown to a point but is stuck and won't come thru at the bottom or the muscle transplant. This is on my good leg-so I have phantoms from my stump on my right as well. Yep not fun. I can't sleep much with the tens on and each time I have nerve tests it's much worse for days after-suffice to say I'm not on any medication because I can't take it and do my job. I'm waiting on further nerve tests, a meeting with my neuro surgeon (one more op) further nerve tests then if it grows another op.

Not sure what advice i can give you; I use St johns Wort & skull it from the bottle it kinda takes the edge off-but I'm just hanging out for a good nights sleep.

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Hi

Have any of you tried a Farabloc sock? I tried it because nothing else seemed to work.

It's not the best fashion accessory - it looks like a vacuum cleaner bag - but I wear it every night & I now have a good nights sleep; the best night sleep I've had for decades!

It doesn't totally get rid of the sensations (feels like a mild TENS), but it has reduced the pain & the sensations significantly. What's more, the effects carry on throughout the day.

You should be able to get one prescribed through your DSC (UK). (Some DSC's are also trialling methods of adding the farabloc material to sockets.) It may not work for everyone, but it's worth a try(?).

Lizzie2

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Hi Lefty:

I'm in the exact same position. This week I had a Steroid shot in my stump and it showed that it is a nerve, maybe a neuroma,

The shot was hell, I was 'grounded' for two days. So my Doc thinking of "burying the nerve deeper.

For me that scares the hell out of me. And I will have to do a lot of thinking before I go into Surgery. I have a little advantage being that I work in the Operating Room with my Surgeon. I totally trust him and will really consider his decision.

But Lefty it really is a big decision that I have to make.

If I can help in anyway please don't hesitate to ask. If you have any surgical questions I can probably get you an answer.

Lynne

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:rolleyes:

Hi Lynne

Sorry to hear you have got your pain back the last I heard was that you were pain free you told us that all your pain had gone.So did the jab hurt or was it pain free only when it was frozen.I know when the pain starts it can get you right down you will really have to talk it over about your next op.

Best wishes Pat.

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Hi Pat:

First my Doc put in a local anaesthetic and then the Steroid. Pat I didn't realize how bad the pain has been until it was "frozen".

The relief was amazing. I wouldn't do it again. That shot was one of the worst things I've been thru medically.

I'm going to really have to think about surgery thou, it scares the hell out of me anyone touching my stump. And the thought of being on crutches isn't something I look forward to. I'm really independant and crutches will tie me down.

but anyway, how have you been doing? How is the new leg working for you? I've been following what you have been thru, and would love to hear how yur doing.

Lynne

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My dear friends, I am sorry you are having so much pain. I think you should go to the site www.ertlreconstruction.com It is not fare to live a life with so much pain.

I read what some people who had it done had to say about it and if I could I would have it done on myself. Luckly I don't live in pain, not much phantom either, other wise I would be looking for a doctor to do it.

I did check this site www.stumps'R Us and exchanged e-mails with DanSorkin@comcast.net. He can really help you about cutting nerves and procedures like that...he also can and will help you to choose the best solution for each one of you. I hope you all be free of pains.

Love and hugs

Dea

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Hi Lefty, sorry you're in so much pain, to where you can't sleep, have you mentioned this to your Dr? When I was having such severe phantom pain, my Dr put me on Trazodone. It seems to relax you enough to let you sleep, did me any ways, but is NOT habit forming, as some of those meds are and I didn't want to get hooked on anything like Ambien, etc. I had my amp in 96 and to this day still have phantom pain off and on, especially in the summer months before a thunderstorm, it's unreal, almost to where it makes me sick to my stomach. :(

Anyways, when I first came home the Director (Dr) of the rehab clinic told me, b/c he could barely touch the bottom of my residual, that perhaps we may be looking towards surgery, to go in and take care of those nerve endings, neuroma I believe was the word he used. I said, "you've got to be kidding"???? Because, NO WAY was I about to go back on the chopping block!!! I was soooooo upset when I heard that come out of his mouth, I just wanted to start screaming! :rolleyes:

Thank goodness I had an appt the following week with my Surgeon, the one who did the amp. I told him what the Director of Rehab said, and he said, "NO WAY"!!!!! I was soooo glad to hear those words!! He also said, DON'T you dare let anyone go in and mess around, which perhaps could make the prob even worse. You know, I figure I just may be one of those people who will always have phantom pain, but still would NOT opt to have surgery. But then, what I feel may not be the best for me, may be for others, so I guess it's really up to the individual and how much they are willing to endure. For me, anything was better than going through another SURGERY!!! I'm sure which ever direction you and others decide to take, it'll be the best decision for you. Good Luck and please keep us posted :D

Sheila lbk

Maine USA

Keep Smiling :)

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Thanks for all the replies. I'm feeling much better now. I have phantom pain 24 hours a day, sometimes it is unbearable and sometimes I hardly notice it. I have already canceled two appointments to have a revision surgery to have the nerve endings removed. I just can’t bring myself to do it yet. I won’t take medicine for the pain because of my job. Maybe someday when I have more free time I’ll have the revision.

Thanks again for all the replies…

Lefty

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