Re: [QUAD-L] syrinx pain or neuro pain

Thu, 27 Apr 2006 23:00:41 -0700

Hi Brian... I do have a baclofen/pain pump I got almost a year ago.  I had a pain trial and it didn't go well and my chronic pain doctor thought baclofen might help and I had a good baclofen trial, so went ahead and had the baclofen pump done.  Then I ended up getting meningitis from the surgery three weeks after, so didn't really start getting the medication until July.  Spent many months adjusting that (the baclofen alone) and it helped reduce the spasms, but did nothing for my nerve pain.  About four months ago my chronic pain doctor added a local anesthetic to the pump and have been increasing the dosage slowly since then, but again so far no relief.  I can go up three more times on the dosage and will be at the maximum dosage they use intrathecally.  If that does not do the trick, my doctor has told me about the snail venom used only intrathecally in the pump that is supposedly working well to help with chronic pain where other medication has failed.  Only problem is there is not a lot of evidence out there (if any that I know of) that it helps with neuropathic pain.  So I'm still hoping the local anesthetic will help and considering the other option for the future.

Corie

----- Original Message -----
From: Brien
Sent: Thursday, April 27, 2006 12:37 AM
Subject: Re: [QUAD-L] syrinx pain or neuro pain

Have you considered spinal stimulation or medicine  pump?

Brien
On Apr 25, 2006, at 10:27 PM, Corie Jones wrote:

I completely understand how you feel Rob (and others on the list who are suffering with pain), I have been suffering with neuropathic pain (also called central pain) for over 12 years. Mine started several months after my injury and has only increased over the years.  I also have a syrinx and had the shunt procedure done five years ago in hopes of relieving my pain, but it did nothing for my pain and my pain has continued to get worse.  Either that or I'm just not coping with it as well.  

My pain level is always between a 7-10.  I have the hot and cold burning, with the pins and needles from my chest down to my feet 24/7.  I've tried all of the pain meds for nerve pain and have had minimal to zero relief.  It is definitely hard to continuously fight it mentally.  It totally affects my quality of life.  As many on the list have said, paralysis is heaven compared to this horrible pain.  The only thing that has helped me stay sane was to go back to school right after my injury and get my Bachelor's and then Masters degrees and then go on to work.  I only can manage to work about 15 hours a week.  I'm a Marriage and Family Therapist Intern working on the required hours to get licensed and I absolutely love my work, so that helps to keep my mind distracted from my pain those few hours a week.  But it is definitely a very hard struggle.  
The only time I get relief is when I sleep and I don't sleep very well because of the pain, but when I first wake up it's the hardest because realizing I'm in for another day of burning hell (literally) is quite depressing!  Like you mentioned, I would love to have an hour free from pain to get a break and feel normal again.  I'm glad to hear the Neurontin is helping some for you.

Hang in there everyone!

Corie
C4-5, incomplete, 12 1/2 yrs. post

----- Original Message -----
Sent: Tuesday, April 25, 2006 9:09 AM
Subject: Re: [QUAD-L] syrinx pain or neuro pain

I acquired quadraplegia in December of 97 (ho ho ho).
Pain kicked in late 99. I began taking Neurontin August
of 2005. Pain levels have decreased from 8 , 9, even
sometimes an unbearable 10. Now it's 4 and 5,even that's
pretty intense but i would just love 1 hour pain free just
to remembr what it's like. The moment i wake it instantly
triggers and this affects my willpower as i am so preoccupied
trying to fight it mentally therefore becoming more tense
causing it to linger.     Thanks.
                                               Rob.

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