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Shocked by Spinal Cord Stimulator and wouldn't turn off.

Rilo419RRilo419 Posts: 2
edited 09/30/2019 - 9:00 PM in Spinal Cord Stimulation

Hi Community,  so grateful forums like this exists. I am a 52 year old male and have had low back issues since childhood.  I waited as long as I could before having my first Discectomy and Laminectomy at L5 -S1 at age 47. About 6 months later I had a fusion at L5 -S1. Still having pain and seeing many doctors  I finally was told my last fusion had loose screws and no bone growth over fused areas as well as spinal stenosis. A revision surgery at L5-S1 and added L4 to the fusion. Upon awakening my first memory was a intense burning in my right foot. The doctor said there may be an issue a but hoped everything would be ok. This new foot pain was more intense than anything I’ve ever experienced. I didn’t know until recently surfing the internet, I found my doctor published a study below: 

Above, my doctor described in more detain that the bone spacer sheared off and went into the L5 nerve root.

Went to ER 7 times in 10 days. Finally ER did CT scan and said you need surgery at once.  The next afternoon I had a revision that did help some. I had less if an electric sensation but still in horrible pain. Pain doctor did 9 nerve blocks and 2 steroid injections but nothing helped.  After trying many meds I settled on Gabapentin,  nortriptyline,  and percocet all together maybe helped 30 percent. My pain doc said there is nothing more he can do and sent me back to surgeon. Surgeon said everything looks fine. I called another Pain doc who said spinal cord Stimulator will help me. He also cut my opioids off completely which pretty much has made me bedridden. I was very hopeful learning about spinal cord Stimulator and went with Boston Scientific for trial July 1, 2019. Trial wasn’t able to get good coverage on foot but did really help leg pain. I went with permanent Stimulator July 15, 2019.  Due to lead migration a revision was done September 23, 2019.  On September 26, the Boston rep asked why I wasn’t using it. I said I felt it best to wait because turning it on  ADD an inconsistent  current whenever I move the slightest. She went ahead and was programming when all of the sudden it felt like the Stimulator went on at 100% current. My legs stretched out from my chair and knocked me to the floor. I didn’t have any control over my leg muscles. For about a minute I flopped around screaming as loud as I could scream. Oh my God that hurt. After a while of not getting the Stimulator off, I thought I was going to die. I wanted a knife to cut into my scar a cut the wires. It was a horrible experience.  Finally the Boston rep was able to shut it down. I felt the current instantly stop. Boston says the Stimulator was off and claims I had a leg cramp.  Later she claims it was residual energy. Next I thought she was going to claim swamp gas. I know this is a rare event but believe me I was being electrically shocked right to my nerve directly!  I requested the log files be sent to Boston’s engineers.  After calling Corporate, she now agrees. Has anyone else had a a runaway shock or had difficulty turning the unit off. It has caused more pain in my legs and a tingling patch next to my sternum. We agreed to wait 2 weeks before trying again. I want some assurance that this will not happen again and if it does happen I want to protocol in place to be able to shut it down.

Edited by Sandra for external link
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Comments

  • memerainboltmemerainbolt IndianaPosts: 3,633

    Welcome Rilo419, we are glad you are here.

    While you’re waiting for a reply to your first post, please take a few moments to review the Code of Conduct and FAQ section, located under Forum Tools. There you will find important information about posting in the forum and helpful tips for new members.

    You’ll find a number of informative resources in the Pain Management Health Center on Spine-health, including doctor-authored articles about Cold Laser TherapyElectrotherapyNerve Blocks, and Spinal Cord Stimulation (SCS). I hope you find these resources helpful.

    I had a bad experience with the SCS as well. The trial went fine then after the implant, they could not get me out of pain. And it just kept getting worse. The reps were not very helpful and was no where to be found when they removed it. 
    Good luck with yours and keep us posted.

    Again, welcome to the Veritas Health Forum.
    Sandra
    Veritas Health Forum Moderator

  • Rilo419, wow you've been through a lot! The SCS experience sounds like a nightmare. Like Sandra, I had a bad experience with it too. I only had mine 5 months before my neurosurgeon said, I guess it's not working for you! They couldn't get it programmed to the point where I didn't constantly feel overestimated. It was painful instead of relieving pain, I never had any relief just more pain. I know they help a lot of people but in my opinion, they need more research. I sure understand your desperation to find relief you've tried everything. You're a brave person, 9 nerve burns! I'm afraid to even try one, lol. 

    I seem to be out of options but I have found that finding a good pain counselor helpful, just learning some coping tools. It's so hard to hear that there are no other options so my heart goes out to you. I use a lot of ice, heat, TENS, mindfulness, breathing techniques and distraction. They don't take the pain away but do help. Sure hope you find something that works for you!! 

    Joanne 

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  • I appreciate your comments.   I think spinal cord stimulators are oversold And over marketed to doctors and the public general.  A friend of mine Mitch Weiss did a story easily found on the internet.  He warns about the dangers of spinal cord stimulation.  I should have listened but the doctor was pushing so hard.  I was not able to have opioids and in so much pain I was willing to try anything. 

  • Rilo419, I found the story and wished I would have done more research before trying an SCS but like you, I was desperate. My doctor, however, did not push too hard but I did feel like it was my last resort. Every time I read of someone getting one, I cringe and just urge them to do the research. It's tough because they do help some people. I just know it didn't for me and damaged my already damaged spine and I still have pain at the battery site.  I still do a low dose of oxycodone when the pain gets unbearable. Thankfully I have a Primary doctor who, thus far anyway, is willing to prescribe. I hope you find some relief! 

    Joanne 

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