[SSG.Bridges]

Hi everyone I am despritly looking for any type of help I am A T10 spinal cord injury with very severe chronic nerve pain have tried everything I know of to try. I have a spinal cord stimulator and a pain pump and nothing works. The V.A. docs want to sever nerves to stop the pain now and I am considering it can't go on like this. Does anyone out there have any advice. Thanks

[araitn]

No advice...... I too, have tried everything thrown at me but, no results. I'm going for an injection this morning into my SI joint but, I'm not really expecting any relief. Hopefully, I'll be surprised with some good results.

Just wanted to say that I hope you can find a decent treatment for your pain. Having the nerves severed is a HUGE decision. I've often thought of it myself.

Good luck!

[SSG.Bridges]

araitn, on 15 July 2010 - 10:00 AM, said:

No advice...... I too, have tried everything thrown at me but, no results. I'm going for an injection this morning into my SI joint but, I'm not really expecting any relief. Hopefully, I'll be surprised with some good results.

Just wanted to say that I hope you can find a decent treatment for your pain. Having the nerves severed is a HUGE decision. I've often thought of it myself.

Good luck!

Thanks and good luck hope it works for you

[Trinity]

have you looked in to DREZ?

[Snakeye]

Would depend on whether it was a good trade off.... Loss of function vs pain....tough decision....

[SSG.Bridges]

Trinity what is drez I have never heard of that but it would be worth looking into I am pretty desprite right now. thank you for you advice.


Snakeeye well I have been thinking about it for two years now and it is a really hard call to make I have such limited function now that it really wont be taking a lot away but I am nervous about it giving me bowel incontinence which I don't have right now the bladder I had taken care of in dec right now I would have a better quality of life going through the surgery but still a big question, what if it fails and makes things worse and adds more problems? Thank you guys so much for your input I am glad I found this web site for the past few years it has been lonely not having people to talk to that are facing similar things..

[edlee]

That was a link that Trin posted, Sarge. Hit it and you'll get the info you need. Or google it.

I wonder if severage of nerves would work. Have they used a nerve block on those particular nerves that they want to sever. If the nerve block doesn't work,, why would the surgery?

Just wondering, because I've been fighting this same battle for a couple of years, and can tell you that the IC cortisone hasn't worked,,, yet,,, still trying. Problem is getting appointments sooner than every two monthes.
ed

[BalancedInteger]

I'm curious as to what you mean by "nerve pain." Where is it located? What does it feel like? If it is neuropathic type of pain, have you talked to your doctor about using Lyrica or gabapentin, perhaps in conjunction with opiates like hydrocodone 5-500?

I'm a T-10 para, too. Incomplete, 16 years post-injury and have been dealing with neuropathy in my feet for @3 years. Lyrica and vicodin has been pretty good to make the pain more tolerable, but I understand that results vary from person to person.

DREZ is something else that I'm considering, but it is a procedure that takes a back seat to my end-stage renal disease for the foreseeable future.

In any case, I hope you find some relief sooner rather than later. Good luck. };0)

[mellowgator]

my friend in desperation had the surgery to get his nerves severed and he is still in pain. i would suggest if a nerve block doesn't work the surgery may not either.

mellowgator

[Trinity]

SSG.Bridges, on 16 July 2010 - 12:04 AM, said:

Trinity what is drez I have never heard of that but it would be worth looking into I am pretty desprite right now. thank you for you advice.

Try this!

 DREZ-1.pdf (38.56K)
Number of downloads: 200

[stillgotswag]

Many people shy away from this, but marijuana works wonders for my nerve pain. Maybe Utah does that medicinal thing. Yo sarge...thanks for serving.

[SSG.Bridges]

Well I wanted to thank everyone for your concern and your advice I really appreciate it. Trin thank you for the info on the drez i meet with my anesthesiology pain doc on the 19th of aug to go over my options, thankyou again.

As for serving it was my pleasure i loved every minute of it that's how i got hurt but was still an awesome experience.

[SSG.Bridges]

BalancedInteger, on 17 July 2010 - 05:40 AM, said:

I'm curious as to what you mean by "nerve pain." Where is it located? What does it feel like? If it is neuropathic type of pain, have you talked to your doctor about using Lyrica or gabapentin, perhaps in conjunction with opiates like hydrocodone 5-500?

I'm a T-10 para, too. Incomplete, 16 years post-injury and have been dealing with neuropathy in my feet for @3 years. Lyrica and vicodin has been pretty good to make the pain more tolerable, but I understand that results vary from person to person.

DREZ is something else that I'm considering, but it is a procedure that takes a back seat to my end-stage renal disease for the foreseeable future.

In any case, I hope you find some relief sooner rather than later. Good luck. };0)

I have tried pretty much all the meds out there I also have an intrathecal pump and a spinal cord stimulator that do nothing I am at my wits end right now and the swelling of my cord is causing new pain and sensation loss up higher than my injury now thank you so much for your help and advice.

[whypaintoo]

I just found this site and I have mixed feelings. It is nice to know I am not alone in my suffering, but I feel very sad if anyone else is feeling the intense pain I feel every day.
I too have tried epidurals and nerve blocks with no success. Since I have hardware and assorted obstacles in my spine they could not do the morphine pump and would not even attempt the spinal stimulator.
I have different types of pain that are hard to describe, the most severe is on my right side that feels like I'm being stabbed with a large knife with serrated edges but also flares up with the lightest touch. This is possibly from a screw in my hardware I'm told, what I'm not told is how to fix this.
What little of my self remains is dulled by 160mg 3 times a day of Oxycontin, 16mg dilaudid 4-8 hrs PRN, plus neurontin, zanaflex, baclofen and zoloft. I don't even get the satisfaction of a buzz from the narcotics, my doc say something about the pain canceling out the high.
My next step may be severing the nerves also, good luck SSG.Bridges please let us know how you do.
Does anyone know if DREZ is a fairly new procedure or the success rate?
Sorry for the long post I have been a T-9/T-10 complete paraplegic in severe pain since 10/31/1998, on the verge of giving up.

[tyvin]

whypaintoo, on 29 July 2010 - 09:24 PM, said:

I just found this site and I have mixed feelings. It is nice to know I am not alone in my suffering, but I feel very sad if anyone else is feeling the intense pain I feel every day.
I too have tried epidurals and nerve blocks with no success. Since I have hardware and assorted obstacles in my spine they could not do the morphine pump and would not even attempt the spinal stimulator.
I have different types of pain that are hard to describe, the most severe is on my right side that feels like I'm being stabbed with a large knife with serrated edges but also flares up with the lightest touch. This is possibly from a screw in my hardware I'm told, what I'm not told is how to fix this.
What little of my self remains is dulled by 160mg 3 times a day of Oxycontin, 16mg dilaudid 4-8 hrs PRN, plus neurontin, zanaflex, baclofen and zoloft. I don't even get the satisfaction of a buzz from the narcotics, my doc say something about the pain canceling out the high.
My next step may be severing the nerves also, good luck SSG.Bridges please let us know how you do.
Does anyone know if DREZ is a fairly new procedure or the success rate?
Sorry for the long post I have been a T-9/T-10 complete paraplegic in severe pain since 10/31/1998, on the verge of giving up.

I am so sorry to hear about your horrifying pain condition. Some people here have advised that smoking weed can sometime help with pain management when all else fails. Have you tried marijuana?

[jscott92064]

Have you tried marijuana?
[/quote]

Tyvin:

Have you tried smoking pot while on other meds - like lyrica and bacholfen?

[qbounce]

If you're adverse to smoking pot, you can also eat it, as with food such as brownies or cookies. The high isn't as strong, but it lasts much longer this way. Or, there's a new way called vaporizing. I'm not as familiar with this method, but it's supposed to be cleaner than smoking. Anyway, do a search on this site about Marijuana and you'll get many hits!! haha

[jscott92064]

qbounce, on 01 August 2010 - 01:50 PM, said:

If you're adverse to smoking pot, you can also eat it, as with food such as brownies or cookies. The high isn't as strong, but it lasts much longer this way. Or, there's a new way called vaporizing. I'm not as familiar with this method, but it's supposed to be cleaner than smoking. Anyway, do a search on this site about Marijuana and you'll get many hits!! haha

That's funny!

[whypaintoo]

I try smoking pot but it does not help the pain much and oddly when the pain is severe it can increase the pain.
I still smoke when I can get it to help me sleep.
I just had to pay out of pocket for some of my meds because my inconsiderate wife decided to quit her job.
To refill my Oxycontin 180 80mg pills was $2500. I should get reimbursed from cobra insurance which costs $1400 a month.
I am trying to get medicare but they need all kinds of documentation.
I have enough problems just keeping on top of my meds and doctor appointments and paying the bills to support my unbelievably
inconsiderate wife, I needed this added insurance BS like I needed more pain.

I would like to thank everyone for their replies and personal messages.
I don't know about anyone else here but all of my friends gradually disappeared from my life after my injury so I don't really have anyone
to vent or go out with, when I am up for going out.

[Gleno]

No answer here too I'm afraid

As somebody further up here said--her friend had his chord severed surgically and the pain is still there--

That's too dicy for me----

[knew]

sarge,dont let them cut you.I dont think it well help. my cord was cut into from my injurie and i still hurt the same way you do.Try anything and everthing first

[BalancedInteger]

whypaintoo, on 05 August 2010 - 09:51 PM, said:

I try smoking pot but it does not help the pain much and oddly when the pain is severe it can increase the pain.
I still smoke when I can get it to help me sleep.
I just had to pay out of pocket for some of my meds because my inconsiderate wife decided to quit her job.
To refill my Oxycontin 180 80mg pills was $2500. I should get reimbursed from cobra insurance which costs $1400 a month.
I am trying to get medicare but they need all kinds of documentation.
I have enough problems just keeping on top of my meds and doctor appointments and paying the bills to support my unbelievably
inconsiderate wife, I needed this added insurance BS like I needed more pain.

I would like to thank everyone for their replies and personal messages.
I don't know about anyone else here but all of my friends gradually disappeared from my life after my injury so I don't really have anyone
to vent or go out with, when I am up for going out.

Ditto for me, as far as pot increasing my neuropathic pain. The one time I tried it, I was reduced to such misery that for the first time in my life suicide seemed like a perfectly reasonable option to escape the pain. Fortunately I opted to go to the ER instead. };0)


$2500 for a supply of pain pills?! Holy shit! Are we talking about generics here? Because my generic vicodin was only @ $20 for 60 pills.

I'm sorry to hear about your insurance issues. Given all that, trust me, it's worth the headache to apply for Medicare. Part D will significantly reduce your outlays for prescription drugs.

Don't know what to tell you about those "friends" of yours who disappeared after your SCI. I don't think that I lost a single friend post injury. Are you sure that your weren't being a "downer" after you were injured? Not being judgmental here. Because if you kept a good disposition and your friends still hit the road on you...well, I'd rather have no friends at all that be surrounded by a bunch of hangers-on who stuck around for no better reason than they felt sorry for me.

In other words, if they changed and you didn't: F*ck 'em. You can always make new friends.

[Gleno]

In other words, if they changed and you didn't: F*ck 'em. You can always make new friends.

^^ Totally agree with this one--lol

[25femalepara]

I agree!!

stillgotswag, on 17 July 2010 - 07:46 PM, said:

Many people shy away from this, but marijuana works wonders for my nerve pain. Maybe Utah does that medicinal thing. Yo sarge...thanks for serving.

[SSG.Bridges]

Well I want to thank all of you for your comments and help.... I meet the doc in a few hours so hopefully they have an idea of what to do I will let everyone know what I find out... Thanks again to all of you

[Scribbler]

Its no conciliation to everyone here still suffering with nerve pain, which I had for a few years. Mine was also on the right side and felt like someone stabbing a knife in and twisting it round and round for hours.

I'm one of the lucky ones that found relief with Gabapentin, but I know what you guys are going through and the frustration it can cause.

Nerve pain has been around since I was first injured, and although there's more drugs available they don't suit everyone. I think nerve pain can be one of the worst things to put up with, and the hardest for the Dr's to control, as everyone's so different.

Good luck with your search for relief; if you find it, you'll discover a whole new World will open up for you.

Scrib's

[25femalepara]

Lately my pain has been getting worst:(

[Snakeye]

stillgotswag, on 17 July 2010 - 07:46 PM, said:

Many people shy away from this, but marijuana works wonders for my nerve pain. Maybe Utah does that medicinal thing. Yo sarge...thanks for serving.

I tried weed ,whoopee, helps for about two hours and gives me bronchitis. Smoke a second time in a day and makes me into a total veggie...Slim benefits are not worth the legal risks if ya live in a non-medical pot state (Glad it helps some folks tho. It ought to be legal)...Doc gives me Precocet but the crap gives me headaches and effectiveness wears off quicker than pot (Have no desire to take fistfuls). Also gives me hangovers from hell..Bacflon makes me sleep my life away, had to get off the stuff...SO...sticking with stretching exersices, One-0.5 mg Ativan a day so as not to go any crazier than I already am, lots of ibaprofen and meditation...Works somewhat and few nasty side-effects...Like to find something better (Still having lots of bad days) but no luck so far...Any advise out there give me a shout..

[pinkcloud]

Does anyone know if DREZ is a fairly new procedure or the success rate?
Sorry for the long post I have been a T-9/T-10 complete paraplegic in severe pain since 10/31/1998, on the verge of giving up.
[/quote]

Hi

I am sorry I dont know about DREZ.

I hear that you are in a lot of physical pain and that you are now in deep emotional pain too?

You have lived with pain for a real long time. And something inside of you has enabled you to live with this. Whether its something thats about yourself, loved ones, hobbies etc something has helped you with the will to survive. I wonder if in your real dark place times you can remind yourself of what this is - and keep using this to keep you going.

I get tired of the pain too, espeically during the first few months post-op. I have my children and friends that keep me wanting to live with the pain. Yeap I am tired of it... and its hard. If I didnt have this in my life, I too would want to give up. But then again, if that happened I think I would seek out something else to live for. As I certainly dont live for the pain.

Keep us posted - I hope you find some relief. I have lyrica - its dosnt work if i up my activity levels too much though. I live with hope that one day I will be pain free. I belive I will - or at least that I learn to live with it even better.

Thanks for sharing your painful experience, its helped me and others I am sure, and hopefully its helped you too

This post has been edited by pinkcloud: 02 September 2010 - 09:27 AM

[isobar]

SSG.Bridges, on 15 July 2010 - 12:57 AM, said:

Hi everyone I am despritly looking for any type of help I am A T10 Para with very severe chronic nerve pain have tried everything I know of to try. I have a spinal cord stimulator and a pain pump and nothing works. The V.A. docs want to sever nerves to stop the pain now and I am considering it can't go on like this. Does anyone out there have any advice. Thanks

Country life makes a supplement with magnesium, potassium and
phospherous which is calming to the nervous system but you
have to exercise. Oatstraw is good for calming nerve pain and
can be made as tea or taken in capsule form. Caradmon,cinnamon
and ginger are helpful and also can be found in teas. All the
above can be found at herbal stores. A (T.E.N.S) machine is good
for chonic pain and are sold at various price points. Water is
essential to the body and promotes proper conduction of electrical
signals through out the body. It could be something in your diet,
if I drink pepsi everyday it increases my muscle spasms. I feel
for you and I hope you find a solution. Pain is a raging beast
that feeds on the mind, the soul, the will and the spirit. It's
one thing a person can definitely live without. "I'm not trying to
offend just trying to help."