Anyone tried Spinal Cord Stimulation for Chronic Pain?

Where did you get the Nevro HF stimulator? And what Dr. and hospital put it in?

Dr. Raymond Topp in Brunswick, GA. He puts them in at a private surgical center. He hooks you up with the Nevro people who are with you during the procedure and monitor you daily for the 1st weeks.

I've been out of Mayo Connect for a couple of years, but I decided to jump in to this discussion.

I had a Burst DR spinal cord stimulator implant two years ago and found amazing relief for the pain in my feet from small fiber idiopathic peripheral neuropathy. I estimated an 80% reduction in the burning pain. I have tried all of the medications for neuropathy, and lots of off label meds, with very limited success. Lyrica helped but the side effects put me in the hospital. Recently I tried desipramine, and it was helping with the pain, but caused bladder issues - urgent need to urinate up to 24 times a day - end of yet another medication. I've been taking morphine sulfate contin for a number of years, and I know it helps me manage the pain.

I've been meeting with the Abbott tech every three months or so, to adjust the settings on the controller, because I was having increased pain. I met him again last month, and I seem to be getting the message that the stimulator is losing its efficacy. I rate the pain most days on a scale of 1-10 and lately I've been having more 7 and 8 days.

Some of you know from personal experience the interaction between chronic pain and mental ill- health, especially with depression and suicidal ideation. The interaction is very real. I'm alive today because of the good health professionals who have been treating me for 15+ years.

I'm going to see a neurosurgeon at the end of this month to discuss the possibility of a dorsal root ganglion stimulator. My understanding is that it can do a better job of targeting specific pain. I'm ready to try something new because my pain is increasing and is interfering with my ability to function. My pain specialist is prescribing yet another medication for me to try, but by now I don't hold out much hope.

I had surgery on my ankle in April, because I was rolling my foot more and more often, with more and more pain that would last longer. It was a Brostrom procedure, with a placement of a permanent internal ankle brace. I'm still recovering from that, but I'm pretty sure it will prevent me from further ankle inversion. The pain I have could be from the last time I rolled it. But the combination of ankle pain and neuropathy pain has been hard.

The point of this post is to learn what others have experienced with regard to the long term efficacy of a spinal cord stimulator. I had hoped that it would be a more or less permanent pain management tool. Maybe it is, maybe it's not.

I appreciate any information you can share.

Jim

Hi @jimhd, It is really good to hear from you and how you are doing. Thank you for sharing. I'm hoping others will be able to share their experience with the Burst DR spinal cord stimulator implant. I did see an article from Jan 2019 about the Burst DR stimulator. Have you seen it?

New Data Reinforce Benefits of Abbott's BurstDR™ Spinal Cord Stimulator
-- https://abbott.mediaroom.com/2019-01-19-New-Data-Reinforce-Benefits-of-Abbotts-BurstDR-Spinal-Cord-Stimulation-for-People-Living-with-Chronic-Pain

John

Hi, Jim. I had my first stimulator implanted in 2012. In July of 2018 I had an updated version of my Boston Scientific implanted. I now have all day coverage on a silent level and I can add sensations where and when needed. I am looking forward to a dorsal root implant as I have small fiber neuropathy and complex regional pain syndrome in both feet. I have been told about people who were in wheelchairs able to walk with this implant. I am allergic to most meds. I do use oxycodone when all else fails - all else being stimulator, lidoderm pain patches, lidocaine and prolocaine cream, tens unit. I also have Degenerative Disc Disease and arthritis throughout my spine - top to bottom! Have also been dx with myofascial pain. I wake frequently with pain especially in hips and thighs. I need further investigation into that problem. I have a DO as my PCP and he has healing in his hands in doing OMT. I also have a DO for pain management . He is incredibly talented and knowledgeable about CRPS. I do like my stimulator. I am more active now as I am a caregiver for my husband who has dementia and non -Hodgekins Lymphoma. Our ages are 75 and 80 and I believe it is a miracle that I am functioning as I am. My faith in God sustains and uplifts me. He is nurturing me as I nurture my husband. I love being taken care of by my loving, merciful, generous Father.

@jimhd Hi there Jim!!! I was wondering and so appreciate your update. I have not been around as much either due to health issues. I check in from time to time.

Hello all. August marks the end of my second year with an SCS. I had a Nevro HF10 SCS implanted mid-August 2017 at the age of 68. On a daily basis, I have no back pain. About once a month my sacrum gets out of alignment and my chiropractor, who is aware of my SCS and works around it, puts it the sacrum) back into position and, after some ice, I'm back to no pain. Prior to the implant and while under chiropractic care, I needed heat every morning for a hour or two and my freezer was filled with ice/cold packs. Occasionally I am reminded of how well it works when I forget and go for 3+ days without charging it, and I begin to feel pain. The last time took more than 3 hours to get a full charge! My only concern is that the battery seems to take more time to charge than it did when I first got it. It was 15-20 minutes a day but is now like 25 or more. I'd like to get at least 5 years out of this battery. Unfortunately for me, 4 months after my implantation, a new, smaller battery was FDA approved, but I'm not certain I'd have waited because the smaller battery/device is not the least bit uncomfortable. I feel absolutely no sensation from the stimulation, another reason I forget to charge it.

Thanks for the link. I just read that article a couple of days ago.

I turned my stimulator off on Sunday morning to see if it's actually helping in reducing the burning pain in my feet. I didn't notice any difference until today. I think the pain is a little worse, but it's hard to know because they always hurt more when I'm on my feet very much. I think I'll have to give it more time to really know. If it gets too bad I'll turn it back on.

Lidocaine cream numbs the pain for a couple of hours. I mostly use it at bedtime to get to sleep, but I don't use it very often because it's so expensive. I save it for the really bad nights.

@jimhd What % lidocaine cream are you using? I have 2.5% lidocaine and 2.5% prilocaine combined for under $10 with insurance

The lidocaine cream I use is 5%. I've tried Capzasin several times but it had no effect on the neuropathy pain. It must help some people, or my pain specialist wouldn't have recommended it. I found out that even though I wash my hands thoroughly, if I touched my eye it burned - really burned, and for quite a while. I decided that if I give it another try I'll use latex gloves. The lidocaine is a prescription, of course. I think I'll try the OTC cream and see if it does anything.