Spinal cord stimulator

[Aaron98]

I was recently recommended for a spinal cord stimulator (SCS) implant, as I have failed all conservative pain management attempts (both pharmacological and non-pharmacological) for neuropathic pain. I found out earlier this week that I was approved for a four day trial, which is scheduled for 6/25/18. I have a friend with ankylosing spondylitis who had a SCS implanted last fall, and he said it has significantly helped with his spinal pain.

Has anyone on this forum had the trial or the surgery for the permanent SCS device? Can you think of any reasons why a person with AMN should not consider this device?

Cheers!

[deengo]

Hi Aaron, I had a permanent one out in January 9th of this year. I had the trial in November and it was great. I went to a friends for Thanksgiving, she met me in the driveway as I got out of my car and said "what's wrong with you? you're walking better" we both laughed.

I've got a lot going on besides the AMN. I've also got CMT and 5 messed up discs in my lower back. since ive had the permenant one out in. the pain in my feet has decreased a lot, something no pain meds could do and my lower back pain is better.

for me it wasn't a cure all but the decrease in pain has been well worth it. I was expecting more pain relief but what I'm getting is ok and I've cut down on my pain meds.

a big plus is it has straightened my left foot out a lot when I walk it used to turn in about 45 degrees when I took a step. I told my neurologist after the surgery that I had it down and she said she didn't see any reason not to.

I get a lot of comments from people that I'm walking better, not good but better. if you have any questions I'll try to answer them for you.

[Aaron98 in reply to deengo]

Thanks so much for the reply, deengo. I was not aware that this device could make your walking better, but if that is an added benefit, great!

You wrote that this really helps the pain in your feet - that sounds amazing. I've tried countless treatments for mine, and nothing has come close to touching it. If I'm able to get 50% pain relief, I would consider that a major win.

I have several questions for you, which might be best discussed over the phone. If you are willing, would you mind sending me a private message with your number? I have very little going on this upcoming week, so I could work around your schedule to call. You are in AZ, is that correct? I think that's one time zone ahead of me. It would be nice to chat! Thanks!

[monkeybus]

Spinal cord stimulator? Sounds extreme, but just as extreme as a baclofen pump, or being on opiates or benzo's until you die.

I looked into SCS a while back, though for spasticity, not pain. I'd volunteer to see if it helps with that.

Electro medicine. It's coming back into vogue (slowly).

TENS works (for me) for both spasticity and some types of pain. I'm looking into where I can try PENS, no electrode pads, the current goes through accupuncture-type needles. Gets it right into the muscle.

I posted about cranial electro stimulation before. None of this is quackery. Any way a pain or spasm signal can be quietened has to be good, more so if it is non-pharmacalogical.

Some with Parkinsons receive deep brain stimulation. Compared to that, spinal cord stimulation is nothing at all.

[Sallyderek]

Hi Aaron my husband has had a SCS fitted around

Three weeks ago and is doing really well. He had two previous back surgeries for ruptured discs, the first op with metal rods and screws and the second with a titanium disc. These ops never cured his pain and he has lived in agony for twenty years and had got to the point of not being able to cope. He never took meds as they made him sick. I think if you have been offered it just take it as you may never look back ☺️🍀

[Aaron98 in reply to Sallyderek]

Hello Sally. I had a spinal cord stimulator (Medtronic Intellis) implanted a little over three months ago. The four day trial went fairly well, and I felt I was getting some pain relief, and talking with deengo convinced me to go ahead with the "permanent".

Sadly, since I've had it implanted, I've been having significant spine and back/side pain. The spine pain is coming from where the leads are anchored to my spine, and the back/side pain is coming from my oblique muscles, where the battery is located. It's actually made my walking worse, because I have to compensate for the pain wrapping around the right side of my back and torso.

I've had it reprogrammed several times in the past 3+ months, at both high dose and low dose frequencies. None of the programs have really helped alleviate the pain in my feet and legs. Since then, I've been doing more extensive research and have found that there is actually fairly little evidence that spinal cord stimulation is effective at alleviating our type of neuropathic pain, particularly allodynia.

Please bear in mind, this is only my personal experience. Deengo loves his stimulator, and anyone who is getting good results from it is truly blessed. It just hasn't been great for me.

I am pretty much out of options from a pain management perspective. I've run the gamut of just about every imaginable pain medication and plenty of non-pharmacological treatments in the past couple of years. The only thing that has helped marginally is cognitive behavioral therapy, which is dealing with how you respond to pain. That doesn't help much on days when the pain is more severe. I hope your husband's results with the SCS are better than mine. Best wishes!