38 replies to this topic

[SSG.Bridges]

Well nothing new but more pain I hope my move to Oklahoma in October will bring better news thank you all again for the advice and support you are great...

[araitn]

SSG.Bridges, on 15 September 2010 - 02:10 AM, said:

Well nothing new but more pain .....

I'm right there with you brother!

Somehow, I hope things get better for you.

[freedomwithpain]

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

dunno if you have tried a meditation practice, and or/ any mind training techniques, biofeedback etc. but they have a tremendous difference in my life dealing with chronic nerve pain.

try this ;


Ocean Meditation
Rest in a quiet silent space and simply breath. With each in and out breath Imagine a deep and beautiful calm blue, green ocean. Imagine that you are held in this ocean, let this ocean bathe you with its goodness, its silence, its stillness. Let it run through you. Let yourself feel yourself as this ocean. When a pain contraction comes, meet it with this ocean. Let the pain be there, let the ocean be there. Let them blend together. Ocean meeting pain. What is bigger, more vast, huge and expansive, meeting your pain. As your attention wanders, just bring yourself back to this sense of being the ocean, of being calmed and soothed by its vast and huge presence. As you breath, keep returning your attention to this ocean. Rest in it, deepen in it, let the ocean become you, and you become the ocean. Repeat bringing the Ocean to the pain, as each contraction arises, breath ocean into pain.
Each time your attention wanders, or pain comes, return like a gentle wave to the sense of calm, deep, still, peaceful ocean.

[hotrod]

I am a T10-T12 burst fracture injured in '06. Luckily I live in Canada and we have a half decent health care system. I've had severe nerve pain for the past four years and like everyone else have tried everything. I'm on Lyrica 600mg daily, Fentanyl 200mcg daily, hydromorphone as needed...still no relief. I know what you are going through and it is a hard way to live!

[josiejose]

I'm always sad to hear of more paras developing pain... but then, all of my docs seem so shocked that I have such pain that I wonder just how few there are out there that actually talk to a doc about their pain.

I had four spine surgeries over the years - we're not talking laparoscopic here, full on, 8-10 hr surgery, open me up and put me back together again. Unfortunately, I'm a "scar former" so my spinal cord and meninges were no exception... I developed arachnoiditis from the diffuse scarring from my L1 (original lesion) to my T8. the inflammation put pressure on the nerve roots coming out from my spine, and all of a sudden, my legs "felt" like they were on fire, I couldn't wear pants, I couldn't sleep with sheets on, I couldn't bear any sort of pressure on my legs or vibration (ie in a car, wheeling on pavement cracks, etc) my legs would go hot and cold randomly... I don't even normally HAVE sensation in my legs! WTF! My docs liken it to "causalgia," what soldiers would get after traumatic amputations, feeling they had a phantom limb - a nerve is traumatically damaged and sometimes the incomplete damage can cause more trouble than the function it preserves...

I had tried every oral pain med known to man. I tried the "brain" drugs: Seizure drugs like Topamax, Neurontin/gabapentin, tricyclics like amitrityline/nortriptyline, didn't try lyrica but my doc said that my poor response on gabapentin was indicative of what my response would be on lyrica. (Also, docs don't tell you but the maker of gabapentin lost a huge antitrust lawsuit recently for false advertising and defrauding the FDA for false claims of gabapentin's affects on neuropathic pain. Apparently the clinical trials with gabapentin and pain say that only approximately 20% of people who take gabapentin for neuropathic pain will actually get relief from it. In my experience it was totally not worth the brain-bending side effects. I lost my short-term memory for two years!
Anyway - I tried opioids - dilaudid, fentanyl patch, morphine (oral, liquid, SR/ER), methadone... I didn't try weed, but it's just as well. I need my brain to work!

Anyway - it came down to two options for me (okay, the third, vegetative living on the couch in a drugged stupor didn't seem like a valid option to me) - I wound my way through the pain clinic, trying everything they had for me, and a trial of the intrathecal pain (and baclofen) bump with dilaudid, baclofen and bupivicaine in it did help. My neurosurg was convinced that the only way to really make it better was to section the nerves responsible for the pain.

This is what DREZ is - it stands for Dorsal Root Entry Zone - this describes the region in the nerve where they cut, but he described it as somewhat experimental, that it didn't always work. The thing that bothered me was that it might not work AND it was destructive... I could end up in worse pain than I am currently. I got the intrathecal pump and I never looked back. It works really well for me, despite all the scarring in my spine.

I would really recommend it, except that it soudns like you have that and a stimulator! wow.
Good luck, tell us how it went with you, Sarge!?

[araitn]

josiejose, on 06 November 2010 - 10:36 AM, said:

...... a trial of the intrathecal pain (and baclofen) bump with dilaudid, baclofen and bupivicaine in it did help. My neurosurg was convinced that the only way to really make it better was to section the nerves responsible for the pain.

This is what DREZ is - it stands for Dorsal Root Entry Zone - this describes the region in the nerve where they cut, but he described it as somewhat experimental, that it didn't always work. The thing that bothered me was that it might not work AND it was destructive... I could end up in worse pain than I am currently. I got the intrathecal pump and I never looked back. It works really well for me, despite all the scarring in my spine.
............

Hey josiejose, our stories sound pretty similar except I've only had two surgeries instead of four. I have the extreme burning sensations from my waist down but, I also have a stabbing, electrical, jolting pain in my left sacrum area.

My last set of MRIs (last week) didn't show any pinched nerves or anything else justifying another operation. I was leaning towards DREZ but, my doctor talked me out of it for much of the same reasons you stated. I was injured at the T11 level (along with L1 & L5 burst fractures) but over the three years since my injury I have recovered some motor function to the L3-L4 level. The doc says that DREZ could possibly cause more pain and loss of motor function.

Anyway, he suggested either a neurostimulator or an intrathecal pain pump. I don't want to do the stimulator because it eliminates the possibility of having MRIs in the future and I have a couple of areas that still need monitoring, particularly a T8 compression fracture (50%) that "seems" to have stabilized and is currently not causing any problems and some narrowing of the spinal canal at L3. So, I'm heavily considering the pump.

My questions to you..... does the medication in the pump affect your brain (sluggish, drowsy, lack of concentration, etc) or does it just provide relief to the area of pain? Can you still drive an automobile legally?

[Adil]

Alain C. J. de Lotbinière, M.D performed a DREZ on me. He was at Yale at the time but has moved on since then. It was the best thing I did for the spasms and pain.

Alain C. J. de Lotbinière, M.D., C.M., F.A.C.S., F.R.C.S.C.(I think the more initials the better ).
Brain & Spine Surgeons of New York
244 Westchester Avenue, Suite 310
White Plains, NY 10604
914-948-6688.

If you call, please say hello and thanks from me.

[SSG.Bridges]

Hey everyone been awhile still working on it I have a new team of docs here in Oklahoma they are trying to work up a new treatment plan I will let you all know if anything is helpful. I have been reclassified to a t6_t7 para now they have no idea why it is climbing so rapidly I have been told it is do to chronic swelling of the cord but with the stimulator in place I can't have the MRI I need so they may take it out but that will be a tricky surgery it causes more pain when on so they want to see it gone. Thank you so much for all your input and advice hope everyone is doing the brat they can.

[isobar]

Hi,




Good to hear from you and i hope your new medical team can find a solution for your pain. Take care , i wish you well.