Neuropathic Pain

• By dani
• Posted September 6, 2008 at 2:46 pm

I've had two surgeries to resect tumors from my spinal cord, one on the c-spine and one on the t-spine. My doctors prescribed for me an anti-seizure medication called neurontin (aka gabapentin). It works well most of the the time, at least until the dosage starts to wear off.
If I don't take it, I get a severe stabbing pain in my right wrist.

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• By gale
• Posted September 7, 2008 at 9:50 am

Hi Dani,

That's great that you noticed a symptom before having a problem such as a seizure. Does this give you time to take your meds before having one or is this when you know your meds need to be adjusted?

Just curious.

Gale

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• By TJ7334
• Posted September 7, 2008 at 4:18 pm

Sometimes people have pain in various parts of their body as a result of tumors in or around their spinal cord. Dani may take anti-seizure meds for the pain even if she has no seizures, right? Those meds help with the pain she has in her wrist as I understand it. Dani, I'm glad to hear that your doctors have found a medication that works for you. Thanks for the insight.

My friend was prescribed Lyrica recently. I think it may be similar to Neurontin; it's an anti-seizure med, too. So far, so good for him on Lyrica. We're checking on a few other options as well.

From what I've read, there are many possible treatments for neuropathic pain. Sometimes you can even combine a few. We're reading more on 'relaxation therapy' in combination with the Lyrica at the moment, but we're open for suggestions.

Here are a few of the possibilities that we've found for treating neuropathic pain:

-anti-inflammatories
-narcotics
-combinations
-analgesics
-sedatives
-anesthetics
-anticonvulsants (seizure meds like neurontin)
-antidepressants
-muscle relaxers
-physical therapy
-hypnosis
-accupuncture
-topical agents like the lidocaine patch
-biofeedback
-relaxation therapy

Please post if you're tried any of the above or if you have other possible suggestions. Thank you!

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• By Rick
• Posted September 7, 2008 at 8:01 pm

I've had three surgeries on my spine over the years to resect a total of 9 tumors. The first surgery being in 1989 and the latest was in 2007. Two of the surgeries have been in my sacral canal where 8 of the tumors have been. My neuropathic pain began in 2007 with the pain beginning in my left glute and ending in my left calf. The Neurosergeons think it is caused from the large amount of scare tissue from the previous surgeries packing around my nerve. They said if the nerve is being touched by the scare tissue, the nerve will translate that as pain. I guess it doesn't matter what is causing it, it hurts like hell at times.

I have tried anti-inflammatories, narcotics, anticonvulsants, muscle relaxers, and the licodaine patch. So far, nothing totally takes the pain away but the best working medication for me is Lyrica. I was on Neurontin for awhile but it really messed with my head, couldn't think straight, my mind was in a fog, consantly forgot words I wanted to say in conversation, etc. I wouln't recomend Neurontin to anybody, but, hey, we are all different and need to find what works best with our individual systems.

Lyrica is a second generation "Neurontin" and is made more specifically for nerve pain. While I still have to suppliment the Lyrica with a tylenol or ibuprofen, and still have some difficulty with consentration, my head is out of the fog now so I feel better thinking at work.

The muscle relaxers knocked me out so it wasn't safe for me to drive and when I tried them only at night, it was like someone turned an off switch after 4 hours and my pain shot up to a 9 very rapidly (1 being the least pain and 10 being the most). The licodaine patch was just totally ineffective.

Good luck with your continued search, I hope you find soemthing that totally works for your friend and if you do find something, please let me know! :-) I'll check out more about the Laser Spine Institute in Tampa, I wouln't mind a trip to there in the winter!
Rick

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• By TJ7334
• Posted September 14, 2008 at 10:44 am

I sincerely appreciate all of the responses given. It makes such a difference just knowing what has helped others. My friend is still using Lyrica for his pain and so far it seems to be working well. He's planning to possibly take a trip to the Laser Spine Institute in the future, but for now it is my understanding that the doctors there are simply looking over his records in order to give him some guidance. If there's good information that comes from it, I'll be sure to share.

Thanks again!

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• By TJ7334
• Posted September 17, 2008 at 8:24 am

Well, the Laser Spine Institute felt that the situation was a little more than they could handle. It seems that response is somewhat common when the experts see situations involving VHL patients. But we're still optimistic. Another door may have opened.

We emailed a doctor whose credentials are amazing, and he actually responded and asked for scans and a medical history to review. Some doctors like challenges, thank goodness! I'll post more when information becomes available.

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• By ReneeMichelle
• Posted September 17, 2008 at 4:51 pm

I also have neuropathic pain. I used to take an antidepressant in combination with narcotics. Long acting Codeine worked well for me. I did try a fentanyl patch and percocet but both made me feel rotten. So I just went back to codeine and took a higher dosage, in combination with the antidepressant. That worked on the pain but made me very tired and I didn't like the weight gain (antidepressants do that) either. In the end I had to leave work on long term disability (falling asleep at the wheel of my car really woke me up, so to speak), spend more time relaxing and enjoying life. I now use ibuprofen and relaxation therapy. It doesn't work perfectly, but it keeps me sane and free of narcotics. I like to listen to uplifting music and watch comedies, or laugh with my friends and family. Those things work better than narcotics for me. Also, being off work has improved my pain control capabilities immensely.

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• By TJ7334
• Posted September 18, 2008 at 10:36 am

ReneeMichelle-

Thank you for sharing your information. There is something to be said for relaxation therapy, especially when used in combination with an effective medication.

We've been trying aromatherapy with chamomile and lavender, plus I've been doing some reading about Reiki. Alone, none of this would likely be sufficient. However, anything that relaxes and takes the mind to calmer places, just like your music and laughter, can't hurt, right? I think the key is in making the effort to try different possibilities. You never know when you might find something that works!

-TJ

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