Should I have the Spinal Cord Stimulator? Looking for reviews on this

Posted by denman55 @denman55, Jun 5, 2023

I have had chronic lower back pain due to lumbar spinal stenosis for over 10-years. I have had multiple therapies and procedures done - including RFA, Epidural steroid injections, a MILD procedure, acupuncture, OT/PT and Chiropractics, as well as an Interspinous spacer and nothing has helped my pain. After all of that, the physician I saw in March's only recommendation was for me to have the Spinal cord stimulator, but I am actually afraid of this and have read that there have been numerous injuries as a result of this implant, and after reviewing the booklet and watching the video I initially felt that it was just to restrictive in terms of how you could move your body. If you have had this procedure please let me know your results. Many thanks.

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Profile picture for Phil, Alumni Mentor @upstatephil

@joanland and @bootmaker - I have not had a spinal cord stimulator installed. But I'm responding with my ideas on having a solid strategy in place to get to the root cause of your symptoms.

(1) Get diagnosed using the latest/best equipment there is. There can be differences in the quality of MRI films and such. (2) Always seek a second opinion. (3) Identify the best medical facility for your medical issues. Don't be put off by remoteness or the requirement to travel a distance to get to the facility. The time investment required to travel can be well worth it! (4) Work to identify the best doc at that facility. (Sometimes, that's hard to do for a layman using the internet. You can increase your chances of working with a first-rate neurosurgeon if you are working with a top-notch medical facility.)

Good luck!

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Thanks so much, Phil. You and vickitennis have given me a lot to think about. I'll be doing more research into who does what and for how long and where (here or elsewhere) before settling on a doc and procedure. Thanks again.

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Profile picture for joanland @joanland

Thanks much to Vikitennis: You've given me much to think about. Fortunately, the neurosurgeon I'm working with is very likely the best between Seattle and San Francisco and possibly including those two cities. He chooses to live here because it is a gorgeous area in which to live.
Congratulations on the success of your implant. I'm so glad you've had the success you've had and gotten back to all the activities you love. I'd be very happy to get back to where I could walk more than 100 yards (after walking 170 miles to elevations of 17,400 ft in Nepal).

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I understand your pain, and feel you don't need to live this way. Have you spoken to the neurosurgeon of your dilemma? Possibly he can recommend a surgeon in Seattle.

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Profile picture for bootmaker @bootmaker

Hello everyone, I have my 1st visit to the spinal pain management department on the 7th of June. I was referred for a spinal cord stimulator. The reason I am going to the Mayo Clinic, is I can not get anywhere with the Dr's here in New Mexico. I have had a double discectomy, a laminectomy, and three spinal fusions. No one knows why about two months after my last fusion, why I am in some much pain. I have trouble walking any distance now. When I was walking a mile and a half twice a day. Any feed back on spinal cord stimulators or even a different process to help with pain, would be greatly appreciated.

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I can't give you any advice except that I have discovered that the doctors fail to tell you how long it takes to become relatively pain free. I had my operation for spinal stenosis well over a year ago. Yesterday, I was in pain. But that was the worst pain that I had had in three weeks. Even with minor pain, I can be miserable during the day and then after dinner, I become pain free and I could work all night if I wanted to.

My acupuncturist had a a similar operation to me. She walked out of the hospital without any problem. She gets regular treatments from a chiropractor. They trade treatments! I am starting back to have chiropractic treatments. I don't have my back twisted. I just have my neck worked on and the chiropractor works on extending my right leg. It makes a difference. I think it relieves pressure on nerves.

I am also having difficulty walking which I didn't have before either.

All I can say is don't expect overnight improvement. Take it slow. I was so determined to get off Tramadol and Gabapentin that I overdid Advil and almost had a heart attack. One doctor did call it a "mini" heart attack.

Best of luck and a lot of patience and slow determination to get back to something called near normal. Just be grateful that you are not in a wheel chair.

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Profile picture for joanland @joanland

Hello,
I, too, am in the process of getting a spinal cord stimulator for intractable back pain. I'm fused from L2 to L5. Pain seems to come mostly from L5-S1 and from the R S-I joint. I was scheduled for the test of the spinal cord stimulator the first Friday in April, but I had a UTI and postponed. Since them, there have not been enough of us to go ahead with the procedure; they like to have several before setting aside a day to do the procedure. I live in a town of just over 100,000 in central OR, but larger centers are about 3 1/2 hours away. I, too, would like to hear from others who have had a spinal cord stimulator implanted.

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My first visit at the Mayo Clinic, Tyler Young P.A-C., M.S. referred me to Pain management, which I will see Tyler Dunn M.D. He also told me it is a process to get the implant, 3 -4 months. In the process go back to my pain and spine management in Albuquerque, NM. and demand they do a Radio Frequency Ablation. I had the injections yesterday Friday 31st, which I could not be leave the difference. I could actually walk like a normal human being. It only lasted for a few hours, it was great for those few hours. I am fused from L2-SI joints. The Dr. that did my ablation injections told me the pain I have is Sciatic pain from not being able to move any of the muscles around the spine. He is the first one to tell any that, which makes since. I will see Tyler Dun M.D. on Friday June 7th, I can not wait to see what can come out of this visit.

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Profile picture for Phil, Alumni Mentor @upstatephil

@joanland and @bootmaker - I have not had a spinal cord stimulator installed. But I'm responding with my ideas on having a solid strategy in place to get to the root cause of your symptoms.

(1) Get diagnosed using the latest/best equipment there is. There can be differences in the quality of MRI films and such. (2) Always seek a second opinion. (3) Identify the best medical facility for your medical issues. Don't be put off by remoteness or the requirement to travel a distance to get to the facility. The time investment required to travel can be well worth it! (4) Work to identify the best doc at that facility. (Sometimes, that's hard to do for a layman using the internet. You can increase your chances of working with a first-rate neurosurgeon if you are working with a top-notch medical facility.)

Good luck!

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Thank you for the information. The reason I am going to the Mayo Clinic from New Mexico, is, it is so hard to get into any Dr.'s office because there is such a shortage. With that is mind, it is even harder to get anything done once you get in. Everyone I have talked to that has visited the Mayo Clinic, I have not heard of any bad interactions, and everyone is getting things done and it is not taking months or even years.

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Profile picture for heisenberg34 @heisenberg34

I had a spinal cord stimulator (Medtronics) implanted back in 2018. This was after a fusion of L5-S1 in 2017 (which did not improve my pain). I had some relief with meds but not great. The SCS was recommended by a neurosurgeon in nearby city. I had the trial (which ws done in pain specialist's office as an outpatient) which lasted about 4 days. It did help quite a bit (70-80%), so I went ahead with the permanent implant. It did not provide as much relief as the trial (50%), but helped to control the pain. Then, in 2021, it just stopped working. The was some thought that the paddle may have moved. Anyway, I just had it removed. Can finally go for an NRI to see what is going on with my back. Implanted pain pump is not providing any relief.

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Thank you for the information. That is good to know.

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Profile picture for vikkitennis @vikkitennis

Good Morning,

After a spinal fusion from L5-S1 in 2015, I had a disc slippage in 2022. I was consulted about a spinal cord stimulator from the pain management doctor I see to thereafter. Previously, I had the epidurals, PT's, yet not wanting to be medicated with pain relievers, as I am extremely active as a 67 year old then. I learned about a SCS from a seminar in 2019, but wasn't ready. As the previous posts recommended, I consulted with three neurosurgeons, one from Mayo in Phoenix, AZ. The pain management doctor recommended Abbott SCS, and I had the trial in December 2022, which was satisfactory, and gave me the green light to proceed and continue with the decision to have one implanted. I chose a surgeon in Phoenix, who has done hundreds of these, and he was quite professional, and pleasant. The device used was the latest model, a Burst, I believe, yet with my slim body frame, it protruded out, yet I felt if it did the work, I can live with it. It created sciatica pain, and five months later was removed with a smaller unit, one that is chargeable, an Eterna. I charge it about six times a year, no big deal. It is working, doing its' job, and I am pleased with it. It is also MRI compatible, and I turn it to surgical mode when needed, and that means through airport security, although you can receive a pat-down. If you strongly consider a SCS, there are many companies that have them, my pain management recommended Abbott. Have the paddles implanted and not the lead wires. The paddles prove to be a longer recovery-rehab, but the results are better to flush the pain to the brain. The lead wires are not as successful, is what I heard. I can't recommend enough to receive three opinions. One was a orthopedist. I didn't care for his demeanor, in fact, when I decided to go through with the neurosurgeon, the office from the orthopedist called me and asked me why I didn't choose him (?) Wow, I understand it is a money thing, as the procedure was well over 150K. Medicare and my supplement covered it all. If you would like more information please contact me. I am not sure I can give out my personal information.

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Thank you for the information. I am sixty years old, and since my last surgery about two months following is when my pain set in. I have been pretty immobile since then. Walking increases the pain, simple things like cooking and extending my arms over the sink or stove increases my pain. With all the information everyone has given me, I can not wait to see if they recommend a SCS for me. I am old enough that I can remember going to the Dr. and they would tell you what is wrong, now days you have to be the Dr. and tell them what you have and what they need to do for you. I had to tell my Dr.'s at the pain and spine management in NM, to do a Radio Frequency Ablation. I had the initial injections on the 31st of May, which I could not believe the temporary relief I received from it. They have not done the actual Ablation yet. This is just a temporary thing, you might bet a few days or a yew months relief for it. Then you have to start all over again. I want something permanent, so I can get back to a more normal life.

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Profile picture for bootmaker @bootmaker

Hello everyone, I have my 1st visit to the spinal pain management department on the 7th of June. I was referred for a spinal cord stimulator. The reason I am going to the Mayo Clinic, is I can not get anywhere with the Dr's here in New Mexico. I have had a double discectomy, a laminectomy, and three spinal fusions. No one knows why about two months after my last fusion, why I am in some much pain. I have trouble walking any distance now. When I was walking a mile and a half twice a day. Any feed back on spinal cord stimulators or even a different process to help with pain, would be greatly appreciated.

Jump to this post

Thank you everyone for the information. I have a lot of information and questions to ask June 7th, when I see Tyler Dunn M.D. I am super excited about this upcoming visit. I hope I come out with getting some permanent relief in the near future.

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Profile picture for bootmaker @bootmaker

My first visit at the Mayo Clinic, Tyler Young P.A-C., M.S. referred me to Pain management, which I will see Tyler Dunn M.D. He also told me it is a process to get the implant, 3 -4 months. In the process go back to my pain and spine management in Albuquerque, NM. and demand they do a Radio Frequency Ablation. I had the injections yesterday Friday 31st, which I could not be leave the difference. I could actually walk like a normal human being. It only lasted for a few hours, it was great for those few hours. I am fused from L2-SI joints. The Dr. that did my ablation injections told me the pain I have is Sciatic pain from not being able to move any of the muscles around the spine. He is the first one to tell any that, which makes since. I will see Tyler Dun M.D. on Friday June 7th, I can not wait to see what can come out of this visit.

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My neurologist referred me to the Mayo Clinic and my case was rejected because the Mayo Clinic could not do anything more than what is available locally. So I haven't pursured going to the Mayo Clinic any further.

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Profile picture for bootmaker @bootmaker

Thank you everyone for the information. I have a lot of information and questions to ask June 7th, when I see Tyler Dunn M.D. I am super excited about this upcoming visit. I hope I come out with getting some permanent relief in the near future.

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@bootmaker, I moved you latest post to your original discussion here:
- Spinal pain management: https://connect.mayoclinic.org/discussion/spinal-pain-management/

I did this so members you've been exchanging with can see your thank you and update. All the best with your upcoming appointment. Please send an update to share what you learn.

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