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Dec 6, 2017 · Implantable neurostimulator for chronic pain in Spine Health

Well, I had my appointment with my neurologist today and before I lose the little energy left in me, he also said I was not a candidate for a neurostimulator as no one (& I’ve consulted so many) knows the origin of the neuropathic pain and the reason for its intermittency – i.e. every evening & night but not every day – makes it even more confounding.

I was quite content being boring & predictable…but I guess that was not going to be forever! Back to strong coffee & scotch as the best helpers. Could be worse, right?

Dec 3, 2017 · Implantable neurostimulator for chronic pain in Spine Health

Thank you for your replies, Jim, Justin and cjpeterson (Sorry, I can’t see if you’ve signed your name.). I am seeing my neurologist this week, and will definitely be asking him his thoughts on the neurostimulator. He retired a few years ago, was bored and returned to work in a private group practice, so I assume no longer has the same access to the Montreal Neurological Institute that he had, but is still full of ideas. He knows all the meds, interventions and alternative treatments I’ve tried. I very much hope his opinion of whether or not the stimulator is appropriate differs from the pain clinic doctor I asked, several years ago.

I find it very helpful to have this chronic pain chat group. As so many of you have said, it’s hard to keep telling your thoughts, questions, etc., to people who don’t experience it – without feeling that I must be boring them silly!

Good luck to all – Gillian

Nov 24, 2017 · Implantable neurostimulator for chronic pain in Spine Health

I have had chronic nerve pain, in one very specific area on my right upper chest, for over 11 years now. About 2 years ago I asked one apparently well respected pain doctor in my pain clinic if a spinal neurostimulator was an option for me. She said it was not. While she spent 5 minutes with me, other doctors there had spent a lot of time trying different medications, interventions, etc. with me. The doctors can’t absolutely figure out where the pain come from, but think it’s from my spinal cord at about T3 or 4. The pain clinic ran out of ideas for me so I am no longer a patient there. I am still seeing a neurologist, however, who is always thinking outside the box. Do you have any idea if this falls in his domain? He has found lesions in my spinal cord which look similar to MS lesions, but aren’t. I have rambled on a bit. My basic question is about the use of neurostimulators and if anyone knows what they are best used for.

Thanks and I’m pleased for you and all those who have had positive results.

Aug 31, 2017 · posted this in 'just want to talk' 2 years ago and had no response in Chronic Pain

Hi xelanoel,

Thank you for your response. Unfortunately this does not describe my pain, but I appreciate your suggestion. All ideas are welcome at this point. I wish you luck with your condition.

Aug 26, 2017 · Non pain related personal discussions in Chronic Pain

I am truly sorry about people leaving the forum rather than having those who are interested in more of a ‘chat’ forum beginning one. I have been following so much of the chronic pain input and skipping the ones that are not relevant for me, such as those discussing their pets. I understand that for many people pets play an important role, but for others they do not. I too would prefer a separate forum rather than feel bombarded with topics that are not of interest to me, but are to others. I have learned so much from people writing about their experiences with chronic pain, treatments that work, ones that don’t, etc. Please don’t give up writing in this forum. There is so much to learn from one another, to feel validated, and to feel we are understood by each other.

Aug 26, 2017 · posted this in 'just want to talk' 2 years ago and had no response in Chronic Pain

Thanks, Gail, for your response. I take a while to reply, which I can't entirely blame on my pain. I have been on Gabapentin & Lyrica, separately, for years, wondering if they did any good. When I went off them some time ago, I felt the pain increase, so resumed. I still have doubts about their effectiveness, however, & may try going of Gabapentin (or Lyrica) again. I have stopped so many meds that didn't seem to help, including Baclofen, Flexiral, Tramadon, Nabilone, etc., etc. Some seemed to help for a few weeks then stop. I may be repeating myself. Can I blame the Gabapentin?? In answer to your question about whether the pain stops me falling asleep or wakes me, it does both. Some nights I try about every hour to lie down, but get up from the pain. Sometimes I fall asleep, but then wake from the pain & must get up & take Ativan, or scotch, or both these days. This is my latest way since my doctor will no longer prescribe Ativan. I admire all of you who somehow tolerate the pain. After about 12 years of it, I am not optimistic about mine ever going away. Maybe I should climb Everest & just keep going!

Aug 13, 2017 · posted this in 'just want to talk' 2 years ago and had no response in Chronic Pain

Thank you all for your replies and very interesting ideas/questions. I was waiting until I’d had some decent sleep to respond, but that could take too long. The GERD idea is novel and last year I did have some tests but there doesn’t seem to be a correlation between the two. I take Pantaprozole occasionally, or ranitidine (sp?) when I have severe indigestion, but that does not seem to help with my chest pain. Pain is almost the wrong word as it’s more a very unpleasant sensation and for some years was absolutely intolerable. Now it’s less severe but much more constant. Every evening and night it occurs, and during the day if I’m not moving around. I’ve not noticed foods that trigger it, but Justin’s question about activity level was very relevant. When I am most physically active, as in heavy cardio exertion, my pain goes away. My former pain clinic, (which ‘fired’ me after years of trying every med & intervention they could think of), was on the 19th floor of the hospital and I was the only patient who loved climbing the stairs to my appointments. Worked everytime in eliminating the pain. Alcohol also gets rid of the pain, for a short time. My gp has just cut me off lorazepam, which for many years was the only drug that worked. I took a year to get off it, only to have her suggest I take it again if it was the only thing that worked. It takes more of it to work than it did for years and now she’s taken me off it again, so I’m left with my stockpile of old bottles and alcohol. I’ve reduced the gabapentin as I started experiencing head to toe itching and after covering myself with coconut oil, shea butter, etc. with no improvement, I read it can cause itching…or stop it. I could go on but it’s a lot of detail. If I could climb stairs all day and function with drinking scotch 24/7, I’d be pain-free! Btw, I used to be told I have a high pain threshold as I tolerated a kidney stone passing while I was pregnant, gall bladder attacks during the same pregnancy and pain-free 36 and 32 hour labours. Went to the Mayo Clinic some years ago and they were as stumped as my Canadian doctors. I think if I could lie down and sleep at night I could live with the pain during my waking hours, but no sleep is truly torture. Well, that’s more than enough info for anyone to read. That’s great news about ‘mizzou’s’ pain disappearing!

Aug 11, 2017 · posted this in 'just want to talk' 2 years ago and had no response in Chronic Pain

Make that almost one year ago! Time flies when you’re having fun, or not, I guess!