Don't get an amputation, for it will not take away the nerve pain.
the pain in retrospect is a very good sign. Although it is like a wolverine trying to claw it's way free and someone spilling fresh lava and stabbing knife shocks...it's all worth it at some level. Best to adapt. Keep busy doing lots of little things. Massage thereapy on neck and back muscles actually work well to calm the area around the BPI. Inflamation is also a culprit in high humidy zones.. Keep cool with fans instead of air conditioning. BPI hates the cold.
Chamomile Tea is a natural sedative to take right before bed. Also 40-50 very slow deep breaths sitting on the edge of the bed in through your nose out through your mouth. Then slide into bed. Suffer the first 5 minutes with the BPI relaxing...then clear your mind of anything except oasis thoughts. No matter what soothes you, it all helps...
Drugs are not worth taking...they only take the edge off...dumb your brain, reflexes, and damage your liver.
If you can keep your arm do it. Still they cannot make a plastic one or rubber coated even remotely close. Use a hemmy sling when you are tired. Make sure there is padding around the strap cover the good BPI side. If not you will experience an increase sympathy pain that is not nice at all...
Hope this stuff helps...
I kept my arm...fought like hell to keep it...so happy I did...
But in the end it's a personal choice.
Help-Phantom nerve pain - Chronic Nerve Pain
Re: Help-Phantom nerve pain - Chronic Nerve Pain
Abby, I live in Madison Wi
I had the nerve graph op Jan 27th 2008
Unfotunately the pain never goes away
I have had all the meds... Too much of them as well.
I stay on 1200mg gaba with tremodal 3 times a day
at nite 10mg oxycotin, and 75 amatriplyn
sorry my spelling is off
the best method for me is keep busy and get hobbies... get out and about,, live life as if nothing happen
it is hard but i do seem to control my pain more and more
I had the nerve graph op Jan 27th 2008
Unfotunately the pain never goes away
I have had all the meds... Too much of them as well.
I stay on 1200mg gaba with tremodal 3 times a day
at nite 10mg oxycotin, and 75 amatriplyn
sorry my spelling is off
the best method for me is keep busy and get hobbies... get out and about,, live life as if nothing happen
it is hard but i do seem to control my pain more and more
Re: Help-Phantom nerve pain - Chronic Nerve Pain
I would recommend the book, Living with Chronic Pain, by Jennifer P. Schneider. I got it through Amazon. It has been a great source of information.
Re: Help-Phantom nerve pain - Chronic Nerve Pain
hello I'm 23yrs old and I had an accident last year and the pain has been very intense. I had a 15hr surgery in louisville ky with Kutz & klienert to do a nerve graph and put a muscle in my arm. since I've tried all sorts of pain killers, i was on oxy10's up to 10 a day then I tried everything from 60mg morphine to 60mg oxycontin to neurontin I recently stopped taking all my pain meds all together. the pain is just as severe now as it was when I was on the pain meds they just made life easier to deal with. my doctor put me on cymbalta today I don't have high hopes for it because nothing has helped so far. i've found if you keep urself busy and ur mind focused on other thing than ur pain that helps alot. get a nintendo wii lol
Re: Help-Phantom nerve pain - Chronic Nerve Pain
Yes, there is a permanent solution.
It is very radical and not many Dr's will do it, but you can have a brain stem snip, for all the pain sensors in your body. This opntion was given to me on a 2 yr trial, if my pain remained very bad at an 8 out of 10 all the time, they would perform the operation.
The only draw back, is that you feel no pain at all in your body. No heart attack, appendix attack, etc...So this is why this operation is not openly offered to just anyone. I showed improvement in my arm, some pain redyction after 2 yrs. Doctors assessed me and said, no, they will not do the surgery now...
Pain Management is a life long challenge with nerve injuries such as ours. Looking for as many ways to cope and manage is a job in itself. I personally encourage this path, but know that there are more extreme measures available too.
Good Luck & All The Best
With Peace & Light
Mardelle
It is very radical and not many Dr's will do it, but you can have a brain stem snip, for all the pain sensors in your body. This opntion was given to me on a 2 yr trial, if my pain remained very bad at an 8 out of 10 all the time, they would perform the operation.
The only draw back, is that you feel no pain at all in your body. No heart attack, appendix attack, etc...So this is why this operation is not openly offered to just anyone. I showed improvement in my arm, some pain redyction after 2 yrs. Doctors assessed me and said, no, they will not do the surgery now...
Pain Management is a life long challenge with nerve injuries such as ours. Looking for as many ways to cope and manage is a job in itself. I personally encourage this path, but know that there are more extreme measures available too.
Good Luck & All The Best
With Peace & Light
Mardelle
Re: Help-Phantom nerve pain - Chronic Nerve Pain
Hi Abby,
I've made several posts today about pain & amputation. I don't regret for one second having amputation.
Unfortunately I too have pain & phantom pain. I have a motor cortex stimulator implant. It help resolve one pain issue. I can't say I would recommend it. I take 50 mg Lyrica 3x's daily, 6 mg Tizanidine 3x's daily, 10 my Methadone 3x's daily and 8 - 16 mg Dilaudid as needed. Dilaudid does help with the pain. Nothing has cured the
pain.
I'm trying acupuncture. I've had two treatments. No change yet. I'm also trying Mirror Therapy. To be honest the show House showed it last week. It will be posted on line this week. It is near the end of the show. I plan to watch it again so I can get the design down correctly. You can make it yourself.
I've had several doctors and therapist recommend it but none know how to build it. It is suppose to help with pain. After I get the design down correctly I'll write more about it.
I hope you find something that works.
Take care,
Janelle
I've made several posts today about pain & amputation. I don't regret for one second having amputation.
Unfortunately I too have pain & phantom pain. I have a motor cortex stimulator implant. It help resolve one pain issue. I can't say I would recommend it. I take 50 mg Lyrica 3x's daily, 6 mg Tizanidine 3x's daily, 10 my Methadone 3x's daily and 8 - 16 mg Dilaudid as needed. Dilaudid does help with the pain. Nothing has cured the
pain.
I'm trying acupuncture. I've had two treatments. No change yet. I'm also trying Mirror Therapy. To be honest the show House showed it last week. It will be posted on line this week. It is near the end of the show. I plan to watch it again so I can get the design down correctly. You can make it yourself.
I've had several doctors and therapist recommend it but none know how to build it. It is suppose to help with pain. After I get the design down correctly I'll write more about it.
I hope you find something that works.
Take care,
Janelle
-
marieke
- Posts: 1627
- Joined: Fri Apr 01, 2005 6:00 pm
- Injury Description, Date, extent, surgical intervention etc: LOBPI
no external rotation against gravity, can only go to 90 degree fwd flexion, no hand-to-mouth
1 surgery at age 14 (latissimus dorsi transfer). In 2004, at age 28 I was struck with Transverse Myelitis which paralyzed me from the chest down. I recovered movement to my right leg, but need a KAFO to walk on my left leg. I became an RN in 2008. - Location: Montreal, Qc, Canada
- Contact:
Re: Help-Phantom nerve pain - Chronic Nerve Pain
Janelle,
I googled it.. have you seen this:
http://neuromatrixtraining.blogspot.com ... r-box.html
I saw it on House too and watched the doctor who designed it, (Vilayanur Subramanian Ramachandran, online a few years ago. Must still be online somewhere.
Marieke 33, LOBPI
I googled it.. have you seen this:
http://neuromatrixtraining.blogspot.com ... r-box.html
I saw it on House too and watched the doctor who designed it, (Vilayanur Subramanian Ramachandran, online a few years ago. Must still be online somewhere.
Marieke 33, LOBPI
-
Christopher
- Posts: 845
- Joined: Wed Jun 18, 2003 10:09 pm
- Injury Description, Date, extent, surgical intervention etc: Date of Injury: 12/15/02
Level of Injury:
-dominant side C5, C6, & C7 avulsed. C8 & T1 stretched & crushed
BPI Related Surgeries:
-2 Intercostal nerves grafted to Biceps muscle,
-Free-Gracilis muscle transfer to Biceps Region innervated with 2 Intercostal nerves grafts.
-2 Sural nerves harvested from both Calves for nerve grafting.
-Partial Ulnar nerve grafted to Long Triceps.
-Uninjured C7 Hemi-Contralateral cross-over to Deltoid muscle.
-Wrist flexor tendon transfer to middle, ring, & pinky finger extensors.
Surgical medical facility:
Brachial Plexus Clinic at The Mayo Clinic, Rochester MN
(all surgeries successful)
"Do what you can, with what you have, where you are."
~Theodore Roosevelt - Location: Los Angeles, California USA
Re: Help-Phantom nerve pain - Chronic Nerve Pain
GREAT VIDEO... WATCH IT:
http://www.ted.com/talks/vilayanur_rama ... _mind.html
(VS Ramachandran discusses Phantom Limb Pain, why it happens, and the mirror box. Phantom Limb discussion starts at 9 min 30 seconds)
V. S. Ramachandran wrote a great book, "Phantoms of the Brain", that explains his conception of the mirror box works and how it works. I've posted about him a few times before.
Download the chapter that deals with phantom limb pain and amputees: http://public.me.com/cljanney
click the folder "Pain"
click download "Phantoms in the Brain - Great Book.pdf"
It is a good read actually and it's not too technical or boring at all.
http://blog.ted.com/2008/03/phantom_limb_pa.php
============================================
"Phantom limb pain at Walter Reed: Mirror therapy works
A recent study published in the New England Journal of Medicine offers new details on how mirror therapy addresses phantom limb pain -- a topic covered by Vilayanur Ramachandran in his 2007 TEDTalk.
Inspired by Dr. Ramachandran's work, a team of researchers from military hospitals tested a group of 22 patients with amputated lower limbs, and found that:
After 4 weeks of treatment, 100% of patients in the mirror group reported a decrease in pain (median change on the visual-analogue scale, –24 mm; range, –54 to –13), but two patients had brief reactions (<2 minutes) of grief on viewing the reflected intact lower limb.
A story on CNN.com this week tells the story of one of the authors of the study, Navy researcher Dr. Jack Tsao, in accessible, fascinating detail"
CNN Story:
http://www.cnn.com/2008/HEALTH/03/19/mi ... index.html
http://content.nejm.org/cgi/content/full/357/21/2206
==============================================
"Mirror Therapy for Phantom Limb Pain
To the Editor: Phantom limb pain occurs in at least 90% of limb amputees.1 Such pain may be induced by a conflict between visual feedback and proprioceptive representations of the amputated limb.2 Thus, illusions or imagery of movement of the amputated limb might alleviate phantom limb pain. Mirror therapy has been used with some success in patients who have had a hand or an arm amputated.3 Since the critical component of mirror therapy may be the induction of limb imagery, we conducted a randomized, sham-controlled trial of mirror therapy versus imagery therapy involving patients with phantom limb pain after the amputation of a leg or foot.
more...."
http://www.ted.com/talks/vilayanur_rama ... _mind.html
(VS Ramachandran discusses Phantom Limb Pain, why it happens, and the mirror box. Phantom Limb discussion starts at 9 min 30 seconds)
V. S. Ramachandran wrote a great book, "Phantoms of the Brain", that explains his conception of the mirror box works and how it works. I've posted about him a few times before.
Download the chapter that deals with phantom limb pain and amputees: http://public.me.com/cljanney
click the folder "Pain"
click download "Phantoms in the Brain - Great Book.pdf"
It is a good read actually and it's not too technical or boring at all.
http://blog.ted.com/2008/03/phantom_limb_pa.php
============================================
"Phantom limb pain at Walter Reed: Mirror therapy works
A recent study published in the New England Journal of Medicine offers new details on how mirror therapy addresses phantom limb pain -- a topic covered by Vilayanur Ramachandran in his 2007 TEDTalk.
Inspired by Dr. Ramachandran's work, a team of researchers from military hospitals tested a group of 22 patients with amputated lower limbs, and found that:
After 4 weeks of treatment, 100% of patients in the mirror group reported a decrease in pain (median change on the visual-analogue scale, –24 mm; range, –54 to –13), but two patients had brief reactions (<2 minutes) of grief on viewing the reflected intact lower limb.
A story on CNN.com this week tells the story of one of the authors of the study, Navy researcher Dr. Jack Tsao, in accessible, fascinating detail"
CNN Story:
http://www.cnn.com/2008/HEALTH/03/19/mi ... index.html
http://content.nejm.org/cgi/content/full/357/21/2206
==============================================
"Mirror Therapy for Phantom Limb Pain
To the Editor: Phantom limb pain occurs in at least 90% of limb amputees.1 Such pain may be induced by a conflict between visual feedback and proprioceptive representations of the amputated limb.2 Thus, illusions or imagery of movement of the amputated limb might alleviate phantom limb pain. Mirror therapy has been used with some success in patients who have had a hand or an arm amputated.3 Since the critical component of mirror therapy may be the induction of limb imagery, we conducted a randomized, sham-controlled trial of mirror therapy versus imagery therapy involving patients with phantom limb pain after the amputation of a leg or foot.
more...."
-
Christopher
- Posts: 845
- Joined: Wed Jun 18, 2003 10:09 pm
- Injury Description, Date, extent, surgical intervention etc: Date of Injury: 12/15/02
Level of Injury:
-dominant side C5, C6, & C7 avulsed. C8 & T1 stretched & crushed
BPI Related Surgeries:
-2 Intercostal nerves grafted to Biceps muscle,
-Free-Gracilis muscle transfer to Biceps Region innervated with 2 Intercostal nerves grafts.
-2 Sural nerves harvested from both Calves for nerve grafting.
-Partial Ulnar nerve grafted to Long Triceps.
-Uninjured C7 Hemi-Contralateral cross-over to Deltoid muscle.
-Wrist flexor tendon transfer to middle, ring, & pinky finger extensors.
Surgical medical facility:
Brachial Plexus Clinic at The Mayo Clinic, Rochester MN
(all surgeries successful)
"Do what you can, with what you have, where you are."
~Theodore Roosevelt - Location: Los Angeles, California USA
Re: Help-Phantom nerve pain - Chronic Nerve Pain
Clinical Trails I did about 3 years ago that gave me my first real chance to control my own pain:
http://ubpn.org/messageboard/thread ... 715#202715
http://ubpn.org/messageboard/thread ... 715#202715
-
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