Help-Phantom nerve pain - Chronic Nerve Pain
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Oscar280
- Posts: 6
- Joined: Mon Dec 10, 2012 5:16 pm
- Injury Description, Date, extent, surgical intervention etc: Crashed a snowmobile on December 26th, 1996. Lost use of complete right arm.
Re: Help-Phantom nerve pain - Chronic Nerve Pain
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
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
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billvxii
- Posts: 28
- Joined: Fri Feb 03, 2012 9:06 pm
- Injury Description, Date, extent, surgical intervention etc: Motorcycle accident Sept 15,2011. R BPI. R Scapula break. 4 Clavicular breaks. T4 & T8 vertebrae breaks.All ribs broken. 4 replaced with titanium ribs.351GRE8
- Location: west of Phoenix,Az
Re: Help-Phantom nerve pain - Chronic Nerve Pain
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!
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!
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Carolyn J
- Posts: 3424
- Joined: Tue Apr 06, 2004 1:22 pm
- Injury Description, Date, extent, surgical intervention etc: LOBPI. I am 77 yrs old and never had a name for my injuries until 2004 when I found UBPN at age 66.
My injuries are: LOBPI on upper body and Cerebrael Palsy on the lower left extremities. The only intervention I've had is a tendon transplant from my left leg to my left foot to enable flexing t age 24 in 1962. Before that, my foot would freeze without notice on the side when wearing heels AND I always did wear them at work "to fit in" I also stuttered until around age 18-19...just outgrew it...no therapy for it. Also suffered from very very low self esteem; severe Depression and Anxiety attacks started at menopause. I stuffed emotions and over-compensated in every thing I did to "fit in" and be "invisible". My injuries were Never addressed or talked about until age 66. I am a late bloomer!!!!!
I welcome any and all questions about "My Journey".
There is NO SUCH THING AS A DUMB QUESTION.
Sharing helps to Heal. HUGS do too. - Location: Tacoma WA
- Contact:
Re: Help-Phantom nerve pain - Chronic Nerve Pain
HUGS,Bill!
Carolyn J
LOBPI/74
Carolyn J
LOBPI/74
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Russian Beauty
- Posts: 3
- Joined: Sun Jan 06, 2013 2:11 pm
- Injury Description, Date, extent, surgical intervention etc: Auto accident 1/2/07, Crushed my left upper side. To make a long story short I had nerve transplant, Motor Cortex Stimulator implanted in Sept 2008, Muscle & nerve transplant in Oct 2008 (it failed in the OR),. I had my left arm amputated Nov 21, 2008. A perifal nerve stimulator installed early 2009. I have been on numerous drugs. The drugs have been greatly decreased. I am going to have Dorsal Root Entry Zone surgery Jan 24,2013. The spasms & pain I have in my left arm have gone from mostly evenings to morning, noon & night.
Has anyone had this surgery? Has it worked? This is my last hope for some quality of life.
Re: Help-Phantom nerve pain - Chronic Nerve Pain
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..
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..
