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Post by kathyb on Feb 29, 2012 0:16:25 GMT -6
1 year post-op for c2-c7 ependymoma. Forearm and hand pain terrible. Can keep at about a 5 w/ combination of tramadol, Percocet. Lyrica: not to sure if that is working. After reading some of the posts, may try to titrate down. Pain, numbness, tingling shoulders down. So, having come to terms that this is just not going to go away, I made an apt at the recommendation of my neuro-surgeon to see his partner to discuss surgical options for pain mgt.
Has anyone been down this road before? Any advice? Stories? I really hate the idea of more surgery, but I am so tired of pain and pills,
Kathy
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Post by kathyb on Mar 10, 2012 12:19:02 GMT -6
I posted also on general forum but thpught I would follow-up w/ this posting.
I met w/ a Neuro sureon Thurs regarding spinal cord stimulator. Not an option for me as my tumor was so high they would have to go into the brain and it would be a surgery, not a needle to place. Anyways, he feels narcotics are a dead end for treating nerve pain as you will eventually need to keep increasing dosage. He suggested my options being Lyrica (which I am on, 300mg/d), and Cymbalta. I have heard cymbalta is hard to come off of.
Then I decided to try a few Xanex I had laying around. Everyone says control stress, so what the heck. The tingling and pain does seem to be better but I would like to know what everyones experience is.
Has any one on these boards used Cymbalta or Xanex to help w/ pain management?
Soooo tired of the pain and pills!
Thanks,
Kathy
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Post by billanschell on Mar 11, 2012 11:44:58 GMT -6
I tried both Cymbalta -- annoying side effects, no pain relief, but not a big deal to stop using -- and Xanax. Xanax did help a bit, but it made me tired and if I ever forgot to take it I'd practically have a nervous breakdown. So for now at least I've given Xanax the boot.
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Post by gotgear on Apr 8, 2012 16:57:13 GMT -6
Five years after my surgery C1-C7, and constant pain managed a little bit w/neurontin/lyrica/noratryptolene combo. Last year my neurosurgeon told me the pain would never go a way, after much contemplation and anger I am exploring getting a medtronic neurostimulator implanted. Has anyone every tried this?
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Post by imnotmaggie on Nov 2, 2012 19:59:54 GMT -6
I'm meeting with my NS next week to discuss the medtronic spinal cord stimulator. Gotgear did you go this route? If so, how did it work for you?
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Post by Kent Davis on Oct 28, 2015 14:43:11 GMT -6
I have not posted in years but thought I would share my experence. I am 15 years postop. I had a intramedullary ependymoma at t-6. Tipical discomfort and lots of pain meds. Had a spinal cord stimulator implanted a little over 2 years ago. It has helped a lot, but not perfect. I only take meds at night now and the stimulator is set a half power. Weather seems to make my pain worse as well as lots of activity. I am able to work 50 hours a week, but I'm blessed because I can stand, set, and do a little walking. I find standing in one place the worse. I can walk pretty good and can even mow the grass, but that puts me in bed for several hour and sometimes I have to take and exta Neurontin (600 mg). My other meds include: 200 mg Celebrex; .5 mg Klonapan; 4 mg Zanaflex. I take these only at bedtime. I was taking them 2 to 3 times a day.
All in all the stimulator has been a blessing. When I get home from work I'm wipped out but I can push through the day and I'm thankful for a comfortable bed to lay down on at the end of my work day.
If I can answer any of your questions feel free to just ask. Like I said it's been a long time since I have posted...I attended the very first SCTA conference in Los Vegas many years ago.
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