United Brachial Plexus Network, Inc. • Help-Phantom nerve pain - Chronic Nerve Pain - Page 3
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Re: Help-Phantom nerve pain - Chronic Nerve Pain

Posted: Mon Dec 10, 2012 6:21 pm
by Oscar280
Hello,

I had my accident in December of 1996. Pain was usually close to 10 most of the time. Holding aconversation was hard at times. I had the DREZ procedure in August of '97 and it completely took away all the pain. I WAS A NEW MAN AGAIN!!!! It's a scary surgery but I can only image that they've gotten better at it since the 16 years I had it. They warn you that it may not work and the pain could come back. My pain has slowly come back, BUT, not nearly as bad and I still sleep through the nights and manage it fine. (My level of hydration seems to directly effect it, so I drink lots of water.)

The DREZ was a life saver for me because I was able to get back to work and live a very successful one-armed life.

I went to Duke University and my Dr was John Gorecki.

Hope that helps!

Oscar

Re: Help-Phantom nerve pain - Chronic Nerve Pain

Posted: Fri Jan 18, 2013 11:04 am
by billvxii
Hi Abby
I am the other Avulsion Mayo couldnt fix.
You can see my story to the right.
I have had all of your guys symptoms and still do. I have found that Gabapentin and Tylenol take care of most of the phantom pain but as for the cause, look for a pimple looking thing on the spinal cord somewhere in the C5 and down neighborhood. You can't fix it but it does seem to respond to Tylenol. If I am going to just do normal day to day stuff I take one in the am. If more strenuous work is involved I take two. It all has to do with pain tollerance. Some days the phantom brings tears to my eyes, like right now actually, but I push through cause I know the pain is fake even though it hurts like hell!
It has subsided over the past year and I'm hoping that continues. I am not on here much anymore but your guys story is close to mine so I had to respond. As for amputation, I will revisit that if the muscle replacement and moved nerves don't respond in the next year or so. It would be great to get rid of the 40lb wieght pulling me to the right all the time.
Tell him get a library card and learn to love to read!
I would talk to him if you would want that. billvxii@gmail.com
Keep your head up and his too!

Re: Help-Phantom nerve pain - Chronic Nerve Pain

Posted: Fri Jan 18, 2013 12:36 pm
by Carolyn J
HUGS,Bill!
Carolyn J
LOBPI/74

Re: Help-Phantom nerve pain - Chronic Nerve Pain

Posted: Sun Jan 20, 2013 11:31 am
by Russian Beauty
I'm sorry to hear about what your husband & you are going through.

I had my auto accident 1/2/07. I have a motor cortex stimulator & a peripheral nerve stimulator, they each worked for a few months. My left rm was amputated just above the elbow 11/21/08. I have been on a numerous amount of drug combinations. Each change would work for 1 -4 months.

I too am having DREZ surgery 1/24/13. That is my final hope for the real & phantom pain to end. I have 3-4 level on a when things are virtually pain free. My 7 - 10 occurs morning, noon & night now. When my spasms & pain reach outrageous levels the flailing of my arm is a huge issue. I have no control & the pain is unbearable.

I don't know hat to suggest to you both other than find a doctor you trust & try the different suggestions. Perhaps a stimulator may help with the pain.

As far as amputation is concerned your doctor should suggest best location. I had no movement or feeling from my elbow down.

I tried a prosthesis but found the effort I had to use to slightly move the hand that it was a waste of time.I was to exhausted to make it functional. It is now hanging in a closet. I don't have the funds for million dollar one.

I'll post after my DREZ with updates.

I wish you both the best of luck..