I have heard of a spinal stimulator. My chronic pain doctor has not
recommended it for my nerve pain. I have heard it only is helpful when you
have nerve pain in one area and does not help if you have it in a large area of
your body, like mine, from my chest down to my feet. It's basically why I
went ahead with the pump.
Corie
----- Original Message -----
Sent: Friday, April 28, 2006 12:57
AM
Subject: Re: [QUAD-L] syrinx pain or
neuro pain
My pain anesthesiologist has mentioned a spinal
stimulator. Are you aware of this?
Bri
On Apr 27, 2006, at 10:59 PM, Corie Jones wrote:
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
-----
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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