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Unbearable Neuropathic Pain, Please Help




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#1 kelli haggerty

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Posted 18 October 2007 - 04:40 PM

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My name is Kelli, my son David (18) has very severe pain on his entire right side (neck to toes). He has a C1 complete injury 3 yrs post. We believe it is neuropathic. No amount of pain medication helps (even IV meds), he's had everything. The pain is so severe that he has become extremely depressed and would like to die. Can anyone give us advice?
I am the mother of an 18 yr old named David. David was in a motorcycle accident 10/04. His injury is a C1 complete and he is vent dependent, no TBI. Hoping to get him dialed into this site, but until then doing what I can to help him.

#2 dave420atya

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Posted 18 October 2007 - 05:27 PM

What meds have you (he ) tried? Opiats don't help. Lyrca only helps me at higher than the recomended dosage. I know it can be excrusiating at times. I hope he can find some relief.
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#3 buffie

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Posted 18 October 2007 - 05:45 PM

[font=Arial Black][size=7]

My name is Kelli, my son David (18) has very severe pain on his entire right side (neck to toes). He has a C1 complete injury 3 yrs post. We believe it is neuropathic. No amount of pain medication helps (even IV meds), he's had everything. The pain is so severe that he has become extremely depressed and would like to die. Can anyone give us advice?



Has he tried neurontin? I am on the generic version called gabapentin. It helps me a whole lot. I take 200mg 3 times a day, sometimes more if I am burning really bad.

#4 kelli haggerty

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Posted 18 October 2007 - 05:52 PM

[font=Arial Black][size=7]

My name is Kelli, my son David (18) has very severe pain on his entire right side (neck to toes). He has a C1 complete injury 3 yrs post. We believe it is neuropathic. No amount of pain medication helps (even IV meds), he's had everything. The pain is so severe that he has become extremely depressed and would like to die. Can anyone give us advice?




Thank you for your reply, he was prescribed Lyrica but our insurance didn't approve it. How much do you take? He has a pain mgt appt next week and they are going to suggest a morphine pump, maybe we should try for Lyrica again. What are your thoughts on a morphine pump? Most of the pain meds he has been given are opiats. Now he is having trouble with his liver because of all the meds.
Kelli
I am the mother of an 18 yr old named David. David was in a motorcycle accident 10/04. His injury is a C1 complete and he is vent dependent, no TBI. Hoping to get him dialed into this site, but until then doing what I can to help him.

#5 Tim13

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Posted 18 October 2007 - 05:54 PM

Marijuana was the only thing that helped me. Luckily, I lived in a state that allowed it for medicinal use.

#6 kelli haggerty

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Posted 18 October 2007 - 05:57 PM


[font=Arial Black][size=7]

My name is Kelli, my son David (18) has very severe pain on his entire right side (neck to toes). He has a C1 complete injury 3 yrs post. We believe it is neuropathic. No amount of pain medication helps (even IV meds), he's had everything. The pain is so severe that he has become extremely depressed and would like to die. Can anyone give us advice?



Has he tried neurontin? I am on the generic version called gabapentin. It helps me a whole lot. I take 200mg 3 times a day, sometimes more if I am burning really bad.


Yes, he has been taking gabapentin for 3 years (900 mg 3 times a day). It helps with the electric shock sensations, but not the severe pain on the right side of his body.

Marijuana was the only thing that helped me. Luckily, I lived in a state that allowed it for medicinal use.



We have talked about it, we live in southern california so it's legal here too. What kind of pain do you have? Did it help right away?
I am the mother of an 18 yr old named David. David was in a motorcycle accident 10/04. His injury is a C1 complete and he is vent dependent, no TBI. Hoping to get him dialed into this site, but until then doing what I can to help him.

#7 Tim13

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Posted 18 October 2007 - 06:06 PM

We have talked about it, we live in southern california so it's legal here too. What kind of pain do you have? Did it help right away?

Sort of like I had a 3rd degree sunburn and the burned part was being hit with a hammer is about the closest i can come to describing it.

Tried it by social chance not as a potential remedy but the relief was immediate so i kept using it for several years till i guess the pot taught me how to ignore the pain. It's cheap and plentiful-well worth a try.

Edited by Tim13, 18 October 2007 - 06:27 PM.


#8 darrel

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Posted 18 October 2007 - 06:20 PM

Hi kelli,
I am C6 incomp. and I was curious if your son Qualified for medicaid now? they will normally pay for what the Dr. prescribes I don't know about the medicinal use of pot, but for some of the other types of Rx
I have heard that the pot makes the pain tolerable but I can't tell you to try it. but I would try to see if the Dr.'s could try something to block the nero pain. I have it also but I just bear with it. if it gets to out of conrol I normally lay down (usually crabby) I have a heart condition so I try not to take any thing I don't need...

#9 Avocado Baby

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Posted 19 October 2007 - 05:38 PM

Hi,

I'm s sorry to hear your son is in so much pain. I know how bad neuropathic pain can make you feel. The only thing that's helped me is Lyrica. Before that, I was prescibed different opiates but they didn't work. The Lyrica has taken 3 monts to reach its full effect (it's cummilative (sp?)) but now, it's so much better and my life has improved 100%.

I'd definitely push for the Lyrica. I wish you all the best and I really hope your son gets some relief soon :cheers:
Paraplegic with Spina Bifida. Sensory and function level is T8. T11-L5 fusion 1993. Laminectomy and decompression T10 2006. Spinal fusion T8-T12 with instrumentation Feb 2007. Moderate kyphoscoliosis. Taking 75mg Lyrica 3xday for neuropathic pain.

#10 matthew33

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Posted 26 October 2007 - 10:14 PM

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My name is Kelli, my son David (18) has very severe pain on his entire right side (neck to toes). He has a C1 complete injury 3 yrs post. We believe it is neuropathic. No amount of pain medication helps (even IV meds), he's had everything. The pain is so severe that he has become extremely depressed and would like to die. Can anyone give us advice?


I also use the generic gabapentin with excellent results. Using the higher dose of the medication. The only drawback is that it makes me a little loopy, but its well worth it.

#11 dave420atya

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Posted 26 October 2007 - 11:07 PM

well , I have doubled my lyrica to 300mg every 8 hours. I was only prescribed 150mg 3 times a day. my pain is much more bearable now . It 's still there but I can handle it .yes a little sleepy and thirsty but I don't sleep or drink enugh so it's all good. The biggest down side is the price $$$ damn it must have gold in it! I still supplement it with my favorite herbal cure.
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#12 Ardean

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Posted 27 October 2007 - 01:23 AM

[font=Arial Black][size=7]

My name is Kelli, my son David (18) has very severe pain on his entire right side (neck to toes). He has a C1 complete injury 3 yrs post. We believe it is neuropathic. No amount of pain medication helps (even IV meds), he's had everything. The pain is so severe that he has become extremely depressed and would like to die. Can anyone give us advice?



My 17 yr old son had a craniotomy to relieve a temporal cyst 5 yrs ago. The result of the surgery was chronic headaches with excruciating pain. The psychotherapist suggested music therapy when the meds didn't help. He listened to and eventually started playing the electric guitar to relieve the pain. It sounds crazy, but loud music would divert the brain from recognizing the pain receptors. Give it a try....it was one of the cheapest and most effective suggestions given to us by Mayo Clinic in Rochester, Minn. You'll have to find which type of music works for him though. We started with classical music with the Bose headphones. Eventually it was hard rock that gave him the most relief.

#13 LuckyinKentucky

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Posted 27 October 2007 - 03:52 AM

I gave up on the prescrobed meds for the most part a while ago, in the end nothing helped until it was in such a massive dose that the side effects were intolerable. Also while different drugs helped the pain in different ways(making it burn instead of stab, or be less frequent, etc) nothing ever really licked it.

Anyways back on track... your comment about music made me think of something I've tried. I've tried concentrating on different things during pain spurts... like sipping on cool water and concentrating on the cold or if a little worse pain maybe biting into an ice cube and letting it sting the teeth.

#14 gustifer

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Posted 27 October 2007 - 05:36 PM

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My name is Kelli, my son David (18) has very severe pain on his entire right side (neck to toes). He has a C1 complete injury 3 yrs post. We believe it is neuropathic. No amount of pain medication helps (even IV meds), he's had everything. The pain is so severe that he has become extremely depressed and would like to die. Can anyone give us advice?


kelli,
i am a c6/7 quad with my right side paralyzed to the shoulder. almost half a para and i too was injured at 18. i have really bad nerve pain in my right hand that about drove me insane. it shocks, burns, throbs, aches, and sometimes just sits their buzzing. it has always been real random and throughout the days and nights and would feel like being electrocuted for about 20 seconds at a time. i know what david is going through with the meds. nothing helped. i was getting shots of demerol every 4 hrs just to knock me out. everything i tried either turned me into a zombie or didn't even touch it. i lost out on a good rehab and a lot of opportunities letting that pain get to me. even tried suicide only to wake up in a hospital with a charcoal black mouth. i finally came to the point where i figured i was going to have to learn to take it and quit everything. i do smoke pot and that does help relax me especially with spasms but never really takes the pain away. its usually a deep breath, a tight sqint and bite down. i learned that sometimes just deep meditation at night and sometimes a lot of occupation during the days gets me through. it sucks and it isnt the easiest thing to deal with, but it seems to be part of the territory. sometimes at night i'll take something to help get a good nights sleep but as for the days you wont live at all if to drugged up. i have always been weary of trying new drugs cuz i find a lot of the time its the same thing. neurotonin has been the only thing i felt that has touched it but even then i only used when i knew i was going to have a bad night. after it was out for a few years, an SCI specialist finally talked me into taking it regularly to help but only wanted a low doesage cause it too can have its effect. i take 300mg 3x a day, which i think is a lot, and it takes the edge off but its still there. i often quit taking the neurotonin, just cause i have this thing with drugs, but after a bit i feel it get a little worse so i'll start again.
my best advise still is to try and use his mind in feeling it different. i know it sounds wierd, but it seems to help. my cousin taught me an easy method of meditation n that is to just concentrate on his breathing and count the seconds from inhale to exhale and visuallize only the numbers as you count. just keep doing that till soon you'll be feeling and thinking nothing else. i feel for him and i hope he can learn to wiegh things out. nerve pain is one of the worst pains to feel. i know. i've been busted, burned, dislocated, all over the place before this. keep him busy and interacting with life and if their are any SCI support groups or rehabs nearby, get invovled and learn as much as you can. it helps a lot being around and talking with others who are in the same boat. i met a guy here who is a c2/3 quad and his whole body burnes and shocks from shoulders down but he has one of the highest spirits and is a mentor here.
good luck and i hope the best for your son. keep living and loving and tell him life is all about rollin with the punches. everyday the son comes up is a good day.
Gus
Wierd, Wandering, Wonderous Working Mind...X 2 + SCI = 1 Gemini Gone Awry!

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#15 Debbie Teague

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Posted 28 October 2007 - 03:44 PM

I found a neurologist who cut the nerves in my back. This was not recommended by my spinal cord doctors but it was the only solution to my unbearable pain. I have been pain free since then, over 7 years.

#16 gustifer

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Posted 28 October 2007 - 05:49 PM

I found a neurologist who cut the nerves in my back. This was not recommended by my spinal cord doctors but it was the only solution to my unbearable pain. I have been pain free since then, over 7 years.


I guess it depends on how far you want to go and what you can deal with. I've heard of the nerve surgery but I heard that once cut, there was no fixing or going back. but who knows, one day they might be able to reverse and repair all nerves. We'll see. Till then, Do what you can, with what you have, where you are and keep on keepin on.
Gus
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#17 Debbie Teague

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Posted 29 October 2007 - 03:04 AM


I found a neurologist who cut the nerves in my back. This was not recommended by my spinal cord doctors but it was the only solution to my unbearable pain. I have been pain free since then, over 7 years.


I guess it depends on how far you want to go and what you can deal with. I've heard of the nerve surgery but I heard that once cut, there was no fixing or going back. but who knows, one day they might be able to reverse and repair all nerves. We'll see. Till then, Do what you can, with what you have, where you are and keep on keepin on.
Gus



Yeah, there's no going back after the surgery but I'm a complete T12 and I knew that I would always be paralyzed. I just couldn't see being in terrible, depressing pain when there was a solution. For me it was well worth it and I have never had regrets. I wanted to live my life without drugs and pain. I'm also 56 years old and I don't have any hopes that a cure will be found in my lifetime. I'm doing really well now and have 2 granddaughters that I keep and have since they were born. I would not be able to enjoy them if I was in the pain I was in before the surgery. I'm a happy para now :wacko:

#18 megatrig

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Posted 30 October 2007 - 05:15 PM

A quick reply

Sativex ... the legalised "unlicenced" form of cannabis was developed specificaly for this problem.

I have tried it and it does work. It still left me a tad spaced out/tired though.

Like every drug its worth trying as it can have no side effects and excellant results

hope this helps!

David
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#19 john S.

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Posted 02 January 2008 - 10:06 PM

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My name is Kelli, my son David (18) has very severe pain on his entire right side (neck to toes). He has a C1 complete injury 3 yrs post. We believe it is neuropathic. No amount of pain medication helps (even IV meds), he's had everything. The pain is so severe that he has become extremely depressed and would like to die. Can anyone give us advice?

Hi kelli,
If your son has been on opiates a long time his lower bowel is stretching and not emptying. This can cause an autonomic reflex pain , like, hurt all over. Theres a device called a PIE system. It cleans out the bowel and large intestine completely. I'm guessing with what you wrote. The worst that can happen if I'm wrong is he will feel much better with bowels emptied.
Trust me, when it doesn't empty completely it becomes hell. Neuropathy would be as close as anyone could describe the pain. You may find hes much more comfortable and it makes the bowel regime pretty easy on all concerned.
I wish you and your son a happy New Year, and I hope this is some help.

john

#20 JOHNS421

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Posted 06 January 2008 - 01:18 PM

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My name is Kelli, my son David (18) has very severe pain on his entire right side (neck to toes). He has a C1 complete injury 3 yrs post. We believe it is neuropathic. No amount of pain medication helps (even IV meds), he's had everything. The pain is so severe that he has become extremely depressed and would like to die. Can anyone give us advice?


Hey Kelli, I'm Brandi and I'm a T10 complete para and I've had the WORST burning from my injury level down all the way to my toes and no amount of morphine, oxycotin or nuerotin, etc could touch it. If I would take it all at one time I would be able to get up and take a bath but then it would wear off what little it helped to start with and then the rest of the day was the most miserable, depressing pain I could ever imagine. For the last year I have been on the fentenyl (morphine) 100 mcg patch and I take 4 of the 30 mg oxycotin a day. They dulled it a tad but that was it. I had been in bed for 4 months straight and extremely depressed JUST b/c of the pain. Howevere; this past Sept I took some xanax a freind of mine gave me and it almost completely went away. I tried to get my dr to prescribe it for me but he treats me like a drug addict and said that there is NOTHING he could find in research that shows that xanax medically helps neuropathic pain. I tried a couple more drs, and phycs but no one wants to touch me or get involved b/c obviously to someone who doesn't understand the pain thinks that I take way too much. So I went to the internet and ordered some. It is EXTREMELY easy to order off the internet. I have to take 2 mg at a time for it to work but since then, I've gotten my job back, I've moved out on my own to another state, I'm managing an office in Atl that I used to manage, working 12 hours a day, happy, as pain free as I'll probably ever get but I must admit I do have to take that amount of meds to get it to go away and none of it works without the other. I usually end up taking 6 to 8 mg of xanax everyday all depending on how many hours I work. On the weekends I don't take as much b/c I don't get up at 4 in the morning and work till 8 at night. I hope this helps you, I know everyone is different and I had tried EVERYTHING. Please tell David that all I could think about was dying too but life changes everyday when you least expect it. There is also a surgery that the Craig Hospital in Englewood, CO does that is called the DREZ...I don't know if he would be eligible or not but I am and there is an 85% chance of coming out of it pain free. My insurance turned it down and I need 50 grand to get it done but I do plan on getting it done and being meds and pain free soon! If you would like to talk to me I would be more than happy to give you my phone number...just let me know. Sincerely, Brandi

#21 dave420atya

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Posted 06 January 2008 - 03:13 PM

The high doses of lyrica are doing it for me . 300mg 3 times a day . It is amazing finaly some thing works . my pain was so incredibley bad , had tried so many meds and it is great to be able to live again. Every one should try this . If your pain is like mine was you should be willing to try anything at this point. PLEASE PLEASE PLEASE do what you can to try a high dose af lyrica 300mg in about an hour your virtually pain free!!!Try it!


DAVE
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#22 jn999

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Posted 07 February 2008 - 05:20 PM

Hi,

I'm s sorry to hear your son is in so much pain. I know how bad neuropathic pain can make you feel. The only thing that's helped me is Lyrica. Before that, I was prescibed different opiates but they didn't work. The Lyrica has taken 3 monts to reach its full effect (it's cummilative (sp?)) but now, it's so much better and my life has improved 100%.

I'd definitely push for the Lyrica. I wish you all the best and I really hope your son gets some relief soon :)

im on mxl slow release morphine plus ordinary 20mg tabs 1 or 2 every 4 hours but the pain still comes ,im a retired paramedic and a t4 incomplete had 8 fractured vertabrae repaired in 2000 still nackered
regards john :help: hope you get something have they done any epidural packs ie drugs into spine it only wworked for about 2 days what is Lyrrica ?

#23 kewlcatkez

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Posted 07 February 2008 - 06:19 PM


Hi,

I'm s sorry to hear your son is in so much pain. I know how bad neuropathic pain can make you feel. The only thing that's helped me is Lyrica. Before that, I was prescibed different opiates but they didn't work. The Lyrica has taken 3 monts to reach its full effect (it's cummilative (sp?)) but now, it's so much better and my life has improved 100%.

I'd definitely push for the Lyrica. I wish you all the best and I really hope your son gets some relief soon :)

im on mxl slow release morphine plus ordinary 20mg tabs 1 or 2 every 4 hours but the pain still comes ,im a retired paramedic and a t4 incomplete had 8 fractured vertabrae repaired in 2000 still nackered
regards john :help: hope you get something have they done any epidural packs ie drugs into spine it only wworked for about 2 days what is Lyrrica ?



Hi,

Lyrica® is Pregabalin and is a similar drug to Gabapentin® and Topamax®. It is a drug primarily used for Epilepsy, as it is an anticonvulsant.

I have tried Gabapentin and Topamax and am about to take Lyrica (along with my opiates :) ) and may even try Zacin ( made out of the stuff Chillis are made out of and is meant to kill like crazy, but block pain receptors) we are just not sure if it will be that useful for Neuropathic pain, I tried xtra hot Tiger balm and didn't help.... Unfortunately, like many others I have constant debilitating and gut wrenching, and all the verbs you can use pain. I actually have nerve, dislocations pain ( multiple, each day) and tendon and underlying other pains./..Its a wonder I can tell the different types, or that the drs can....

Anyway, just wanted to let you know what Lyrica is and wish you luck finding some respite. Hello to a fellow healthcare Professional...

Take care,

K

Edited by kewlcatkez, 07 February 2008 - 06:20 PM.

Ex Nurse (med retired)
Connective tissue disorder & associated paralysis.

#24 handi2

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Posted 22 February 2008 - 10:08 PM

I was interested in the Morphine Pump and went thru the trials. You must stay in a hospital setting and have the (sp) intrathical injection of Morphine. this is done with the epidural procedure that slowly adds Morphine into the cerebral spinal fluid. Right into your spinal cord.
This and all the other methods of pain control did not work for me. If you have pain emmiting or coming from the central spinal cord there isn't much you can do to eliminate the pain. Their are drugs to help you cope. Have you doctor do a IV drip of Lidacane until your eyes start to cross. If the pain stays the same it is reffered by my doctor (a quad) as central spinal cord pain. No nerve blocks, freezes, DREZ procedure or anything else will eleviate the pain

#25 Diogo Brazil

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Posted 29 April 2008 - 12:18 PM

Hi everybody.
Five years ago I had an unbearable hips and legs pain. I couldn't sit in the weelchair or in a sofa.
I had to stay in a bed for more than two weeks.
The doctor prescribed Gababentina and 10 days after i felt better.
Now I take 300mg twice a day. I am still in pain, but I can do everything I need in my routine.
The dosage could be raised but I decided to maintain the way it is.
I have to take several drugs - baclofen , oxibutinina, diazepan, sinvastatina, antibiotics for bladder infection -too much quimical.
I dont know how long my body will tolerate this stuff.
I m new here from Brasil and c4-c5 injured.
Thank you all.

This Forum is fantastic. Thank you. Good luck for everybody.
Diogo

#26 stecurtis331

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Posted 03 May 2008 - 11:17 AM

hi my husbands on morphine 600mg daily and oramorph for break through pain and numerous others including diazepam,p.r.n
the nurse told us that with the pain being neuropathic pain no ammount of mst will work so they are now tring to take him off the mst slowly and try to introduce other pain control,he was on gabapentin 600mg 3x daily at first which was working,he started getting a reaction to them so they weaned them off,the gp doesnt quite no what to try.
the also has to have bloods taken every 3 mnths because all the morphine is effecting his liver,so from what i believe is that morphine doesnt help ppl with this type of pain,it works at the beginning when the body hasnt had it before,then the body becomes immune to it soo then gps etc have to increase the dosage.
i hope you find something that works for you,because i know what my husbands pain score is 10 most of the time,and i hope that is not the case with your son,take care and good luck

anne-marie&stephen
ALWAYS LOOK ON THE BRIGHT SIDE OF LIFE,DEE DOO,DEE DOO,DEE DOO,DEE DOO

#27 chucks2k

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Posted 22 May 2009 - 01:26 AM

hi my husbands on morphine 600mg daily and oramorph for break through pain and numerous others including diazepam,p.r.n
the nurse told us that with the pain being neuropathic pain no ammount of mst will work so they are now tring to take him off the mst slowly and try to introduce other pain control,he was on gabapentin 600mg 3x daily at first which was working,he started getting a reaction to them so they weaned them off,the gp doesnt quite no what to try.
the also has to have bloods taken every 3 mnths because all the morphine is effecting his liver,so from what i believe is that morphine doesnt help ppl with this type of pain,it works at the beginning when the body hasnt had it before,then the body becomes immune to it soo then gps etc have to increase the dosage.
i hope you find something that works for you,because i know what my husbands pain score is 10 most of the time,and i hope that is not the case with your son,take care and good luck

anne-marie&stephen


Sorry to hear of David's recalcitrant pain. Here is a link to a very good paper on Neuropathic pain and levels of treatment. What has caught my eye is the DARZ (Dorsal Root Entry Lesions) surgery.
http://www.thecni.or...-p20-balazy.htm This paper describes the procedure and outcome for the type of pain your son and I may be having. Apparently a fairly high success rate for relieving chronic SCI pain. I've read it is most successful for cervical and upper thoracic injury. I am researching the procedure and scoring the net for Neurosurgeons who have a high degree of experience with this procedure.

#28 greycat

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Posted 22 July 2009 - 08:10 PM

I found a neurologist who cut the nerves in my back. This was not recommended by my spinal cord doctors but it was the only solution to my unbearable pain. I have been pain free since then, over 7 years.

were did you find a doc 2 cut your nerves
WHEELZ

#29 Gary Is

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Posted 18 June 2010 - 11:23 PM

I found a neurologist who cut the nerves in my back. This was not recommended by my spinal cord doctors but it was the only solution to my unbearable pain. I have been pain free since then, over 7 years.


I have a long list of things that I have tried over the past 20 years; nothing works really good and I am now after 30 years a L-1 para am going down the tubes.

Your post interests me, what is the doctors name and where is he located?

Gary

#30 Smileyblue

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Posted 19 June 2010 - 12:07 AM

Here by us the procedure of cutting the nerve that's causing the pain is called a sympathectomy.. My neurosurgeon has discussed it with me as well, but we're trying all other avenues first.. So far I've had no luck, so I'm not of much help.. May u have better luck.. ;-)

What's important is not what happens to us, but how we react to what happens to us..
God gave us two ends, one to think with, n one to sit on.. Success depends on which one u use.. Heads you win, tails u lose..



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