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

Rilo419RRilo419 Posts: 2

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: 4,315

    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 

  • Hi All!  Abbott St Jude SCS on May 10th this year and huge huge mistake. I too feel that this is a huge money game and poor results but was and still desperate for help with pain. To add to it all I had it removed sent for new MRI only to discover days later that the line or part of the line is still in my body. I am so over all of this. Have appt with neurosurgeon this week. Only been to ER 4 times since implant. Lol. Have severe pain behind left shoulder blade down arm tingling pins ans needles zaps throughout body gastro issues and disassociation disorder with hands and some vision issues. C5-C7 severe narrowing and disc damage. I have tried ablation and steriod injections but very short window of relief. I am worse than before implant. Wish someone would stop the promotion for these type of devices. Well wishes to all. 

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  • I had a similar thing happen to me....on September 26, 2019 in Austin, TX the Boston Rep was setting my SCS when suddenly my left leg jumped off the ground knocked over a computer and hurt like hell. My initial shock was not as long as yours but my left side from my waistside down to my foot hurts all the time, tingles like it is asleep and very sensitive to the touch (my dog wags her tail and hits my leg and it feels like it is being shocked all over again. Very strange...would love to compare notes. 

  • Rilo419 - Sorry to hear about your experiences with your SCS.  I have an SCS implant from a different manufacturer that has two different "kill buttons" to turn the unit off, one on my external control unit and one on the transdermal charger for the internal battery.  The first thing that was tested after starting my unit was to verify that both kill buttons shut down the SCS unit.

    Before this Covid-19 event, I was still working with my surgeon to find the "sweet spot" for my SCS unit to assist in pain management of my spinal cord injury in my mid-cervical area.  My leads are implanted at C1/C2.  Because something that happened, my SCS is now creating more pain than it is managing.  Being rather close to NYC, I'm currently on my own, so I've had to turn the unit off and tough it out for now.  Even with the unit turned off, I'm currently having on again/off again sharp, prickly, electrical sensations in my forehead, shoulders, chest and arms.  The prickly feelings get worse if I turn the SCS unit on, even at its lowest setting. 

    I wish I had good suggestions for you.  Residual shocking feelings are no fun.

  • There is a simple way to turn off a rogue stimulator. It takes a small investment though. Go to your local hardware store and buy a strong magnet. If you put the magnet over the battery pack implant it will turn the unit off. I know this because I have done it in the past. The only thing that will mess with a SCS is a strong magnetic field. Sorry you are having problems. Hope this helps.

    Chris



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