Nevro Spinal Cord Stimulator Trial & Fibromyalgia
Posted , 8 users are following.
Hi Everyone,
I apologise in advance, I've never contacted an online forum before so I might ask questions that have already been answered in other posts and I'm not a 100% comfortable with the process. A quick overview of my case, I had a severe injury to my L4/L5 discs when I was 15 resulting in a herniated and bulging disc with compression of the S1 nerve root. I have been in CONSTANT pain for 8 years and have tried everything imaginable par surgery (basically I was told I was too young, live with it and come back when your older....nice!) ie. physio, acupuncture, nerve blocks, epidurals, any and all homeopathic techniques, opioids (DO NOT WORK ANYMORE), basically anything you've heard of I've tried with ABSOLUTELY NO pain relieve not to mention thousands of dollars washed down the drain. However, on top of this I have Fibromyalgia (chronic pain condition). I've already been booked in on the 11/09/17 
to have the Nevro Spinal Cord Stimulator trial but I was wondering if there were any other Fibro patients out there who have had the Nevro system put in for lumbar, buttock and sciatica pain and your experiences with the system. I'm really desperate now, living in constant pain for this long has had significant impacts on my lifestyle as well as my professional career (Medical Researcher) which I have had to put on hold as most days I can't even get out of bed. My only other concern and I guess this would be for everyone who has had the trial done and then gone in for the permanent implant - I have read countless articles and research papers where patients find post trial implantation disappointing as they did not receive the same amount of pain relieve as with the trial. Does this correct over time or have you had to go back in to have the leads realigned extra ? I'd honestly love to hear from people who have loved it and people who hate it and what their reasons behind that is. Also people who have had the device in for more than a year, are you still receiving the same amount of pain relieve as you did in the beginning or has it slowly decreased as time continues? I can find the statistics and cold hard facts in research papers but not the emotional aspect which is what I'm truly after. I'm absolutely petrified that playing around with my spine will only cause me further pain and would be most appreciative for your thoughts and input because at this point in my life I'm desperate for a reprieve from this pain.
Thank you to all who reply 
2 likes, 7 replies
Strbshortcake chantel54091
Posted
Hi Chantel my name is Kristie I have been dealing with a nerve condition that has affected the l4 and l5 on my back which also has affected not only my back but my legs feet and ankles. I like u have been thru everything imagineable to help with the pain I have had 2 neurostimulator implants thru medtronics and I was told about the Nevro system that it was a good system out there I wouldn't have to deal with the tingling and numbness with the Nevro system I would be able to sleep and drive with it on. Well I had the Nevro implant put in a week ago they didn't do the trial they just skipped it so I'm starting to regret having the Nevro system put in I'm in so much more pain I can't tell the Nevro is even doing anything. Since the surgery I have had a migraine non stop. They say everyone's bodies r different when it comes to pain I wish I did more research on the Nevro H10 implant cause from what I have read and seen people don't seem like there getting relief with it. I wish my Dr put me thru the trial period. I rather go back to the Medtronic neurostimulator implant I had at least I know I can feel that working . I'm not trying to defer u away from the Nevro but it doesn't hurt to go thru the trial period, cause with the trial u will know if it's best to have it permanently implanted. I guess since I have been thru so much I was willing to give it a shot I should have done more research I guess what I thought would be good is they say u can sleep and drive with it on, u get 10years flat out of the battery, no more numbing or tingling sensation, your life will improve so much more. I'm hoping after I get the Staples out and do see my pain Dr that if the Nevro hasn't given me any improvement that I can go back to a Medtronic neurostimulator implant again, if not I will probably be in a wheelchair in the next couple of years. I hope that I was able to help some any questions or if you want to talk on the phone that would be cool just let me know good luck with everything.
chantel54091 Strbshortcake
Posted
Hi Strbshortcake,
I'm so sorry to hear about your experiences, pain I think is one of the worst things to try and go through, not just physically and mentally but emotionally. I have had so many doctors tell me "well, you shouldn't be in so much pain" or "you're going to have to learn to live with it", the amount of times this has been said to me I cannot express enough. I had the Nervo H10 implanted Monday this week - the post operative pain was hell.... I was expecting some pain but dear god I wasn't prepared to wake up in recovery and again I was told "you shouldn't be in so much pain the local is still in effect". I must admit that I have also had a constant headache and I get incredibly painful spasms and what feels like a red ant biting me and then the pain traveling along the nerve. No shocker here but the Nervo representative which I have to say has been an amazing guy has never heard of this happening before - seems like I'm an anomaly at every turn. Even with this side effects on program 1 setting 7 I am getting a pain relief from a 9/10 to a 2/10. It has truly given me some hope however I know that for some reason the permanent implant isn't as successful as the trial which has me concerned. But with the success with the trial I have to at least give it a go and I really walked into this being a skeptic thinking it wasn't going to work at all (I didn't want to get my hopes up). I'm so sorry to hear about your current predicament and I hope that the Nervo has given you some improvement or that your other options are viable. All the best, take care !
tfigge57 chantel54091
Posted
linda1718 tfigge57
Posted
I’m so glad this has worked for you and your pain has decreased. The last appt I had with my Consultant he said this was probably going to be the next course of action as the spine ops I’ve had have not been successful, mainly leg pain now. Like you I can barely stand about 10 minutes max. I have read so many bad reports about these implants that I wasn’t prepared to go down that route but your message has made me really think about this now and not write it off completely.
I hope you don’t mind a couple of questions though, are you in UK? What muscle relaxant are you taking as nothing seems to work for me!
I hope you continue to improve.
Linda x
glenn69143 chantel54091
Posted
jerry67710 chantel54091
Posted
Hi Chantel My name is Jerry. I had the Nevro system for two years, The test were at 80% relief from the pain. I was down from taking 180 mg Morphine XR a day and 60 mg of Opana to 45 mg of Morphine XR and 30 mg of Opana at the best results after 4 months the system was change by the Tech and my body crashed. I had to update my meds 90 mg morphine XR and 40 Mgs because pain. The tech said my body rejected the high flow of the simulator and my body could only receive a small amount of flow. Thus why the change in my pain medication. I had been completely SATISFIED with the System and the amount of Pain Medication.
Two years later my body started to have problems; first it started with being unbalance or wobble; Next new numbness on my left leg and a little more pain but no increase in pain meds; Now can't walk for more than a hour without rest because of the Pain; still no increase of pain meds because I can rest. I have red ants shooting jolts of electricity through my spin and in my lower side of my head. My ears ring, My legs burn with pain, My Back hurts left lower side, I'm going to asked my pain Dr. to increase my pain medication.
The simulator may be responsible for all of the new problems. I had a CAT scan of the lower spin, I think they should shut it off for a month and increase my pain meds to the levels before the Pain Stimulator. Then make a decision on take the device out if we find that it has caused the new problems. More to come... Jerry
allaroundanne jerry67710
Posted
Let us know how you do getting your pain meds upped in the current fake "emergency opioid crisis" that so far has really only just hurt chronic pain patients and done very little else to solve any problems. Ugh... I hate when the government thinks it went to medical school and can decide how to handle pain management for patients now, what's next? How much anti-depressants people are allowed to have? Maybe how much insulin a diabetic can have? Why not? If you are going to be a pretend pain management specialist, go ahead and be a pretend psychiatrist and internist too.