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

Hi germangirlvt- I'm assuming you are talking about a potential fusion of L5-S1. If not, please explain where the fusion will be taking place.
I am fused from L2 to L5. I have considerable back pain coming from L5-S1 and from the two SI joints. The neurosurgeon I saw said that a fusion at L5-S1 was guaranteed to fail because that is the only level of the spine that currently has any movement. If that level were to be fused, my lower spine would be totally w/o any ability to move. He said he could guarantee that a fusion at L5-S1 would be a failed fusion. Perhaps you are talking about a different level?

@germangirlvt - Good morning and welcome to Mayo Connect. This is a great place to get new ideas, share common experiences, and converse with those who are going through or have gone through medical situations similar to yours. You already have gathered some good input!

I had a four-level lumbar laminectomy/fusion (L2-5) in May 2023. My situation was somewhat different then yours - which is nearly always the case with every spine patient. It's a great idea to get a 2nd opinion from Mayo.

I'm not sure I follow your discectomy vs fusion question? In my case, the two procedures, though separated in the OR by 48 hours, were connected. The discectomies dealt with the spondy and stenosis while the fusion helped with the spondy while creating a point of stability in my lumbar region. In other words - one begat the other.

Are you attempting to avoid a fusion? In my case, I don't think having one vs both would have made any difference in my recovery while doing both improved my overall spinal stability.

Which doc are you seeing at Penn? I have gone there for my spine issues and there are good and not good neurosurgeons there, in my opinion. I f you want to message me I am happy to share my experience.

@germangirlvt Welcome to Connect. I see you've already met @upstatephil who shares valuable experience with both cervical and lumbar surgeries. I am a cervical spine surgery patient and I also have thoracic outlet syndrome (TOS).

I wanted you to know that cervical central canal stenosis can present as problems with legs, gait abnormalities, sciatic pain and difficulty walking and I had those symptoms. When you also have a lumbar problem, it gets difficult to determine which area is the bigger cause of the spine symptoms. If you have significant spinal cord compression in your neck that also carries the risk of paralysis if there would be another injury.

Having TOS affects the cervical spine as well by causing more pressure on the vertebrae with muscle tightness and spasms. For me, TOS is worse on my left side and makes tension greater there, and it can often start turning my cervical vertebrae with a muscle spasm. That has contributed to vertigo if I looked upward not knowing my vertebrae were rotated, and I lost my balance and fell backward. The reason is that there is a vertebral artery inside each side of the cervical vertebrae which is part of the blood supply to the brain, and twisting stretches these arteries, and then looking up and craning the neck would kink them and decrease blood supply further. That happened before I had any spine surgery, and since cervical surgery, my neck is more stable, has fewer spasms, and I do stretch to maintain function.

I have managed my TOS with physical therapy and specifically Myofascial Release to loosen all the tight fascia that binds everything. This helps my neck and surgical scar tissue. I did have surgery for the central stenosis 8 years ago with a C5/C6 fusion. I continue to work on MFR type stretching that I learned from my PT which helps. I need to periodically release my surgical scar tissue on my neck and it kind of links to the TOS tightness because those areas are very close together. Here is our discussion about MFR where you can learn more.

Neuropathy - "Myofascial Release Therapy (MFR) for treating compression and pain"
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/
Here is a link to a medical paper that explains how cervical stenosis can present with leg symptoms. Not all surgeons would get this, and the symptoms can be misunderstood, and they need to be certain they are addressing the correct issue before they operate. It's best to put this question on the table at the beginning before you get a complete diagnosis because if you come back with this after you have a surgeon's opinion, it puts you in the position of correcting them, and they may not listen to any of it and miss the diagnosis. That happened to me after several surgeons missed this, so I came to Mayo asking about this funicular pain. My surgery fixed all of this which is proof that I had this type of pain and dysfunction.

Eur Spine J. 2011 Jul; 20(Suppl 2): 217–221.

"Cervical cord compression presenting with sciatica-like leg pain"
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3111492/
I can tell you that I didn't think cervical spine surgery was that bad, at least for my single level fusion which was done without hardware. After I got past the waiting period during healing and saw my PT, I felt much better, but initially the surgery increased the TOS pain because of inflammation in the same area. I was able to manage without pain medicine after surgery, and it nauseated me and made me constipated, so it was best to just stop taking it. Lumbar spine surgery is a more difficult recovery because you bear most of your weight on the lumbar spine.

Have your surgical consults discussed cervical spine issues as well as lumbar spine issues?

I might as well get my two cents in here. Talk about disappointed, well, that is me. I am now 85+ and have had back troubles since I was 40. Had all the treatments over the years. Nothing helped for the long term. My latest pain management doctor suggested Abbott SCS. I would try anything to be normal again so I bit. $250,000 plus later and the unit is turned off. I got zero pain relief and all it did was make my legs so weak I could not walk up stairs without grabbing a hand rail and pulling myself up. Oh, I have had 9 different programs, each with several different power settings and zilch pain relief. Once I had a referred pain in my right leg that was so bad I darn near passed out. At least a 8-9 level pain. A man came running up to me thinking I was having an heart attack. He was ann EMT and wanted to help. I told him it was a leg pain. Abbott said I would get 40-50% pain relief when we did the test. (they used some tricky figuring to get those results.) Didn’t happen. All the implant leads have been checked and are in the proper placement. Controller seems to be working. Sure made my legs weak. Took me six months to finally get Abbott to admit that “it could make my legs feel weak”. Didn’t feel weak, they were. 9 months of exercises to get them back. So that is my story. No fairy tale ending here. I am still waiting to run into someone with a SCS that is working for them.

My late husband had a SCS and experienced great results. Of course he had the trial first. The company worked with him very well on getting the stimulator adjusted. They called him the morning after placement. Called daily a few days, then weekly for a while. He had the Nevro SCS.

That's really unfortunate. I had a Medtronics scs for about three and a half years. It worked fairly well until it suddenly stopped. There was some thought that several of the electrodes on the paddle had burned out. Who know? Did you have the trial? And, what kind of pain relief did you get if any? They always shoot for at least 50% pain reduction before moving forward with the permanent implant. I had about 80% pain reduction during the trial but only 50% with the implant. Still, it was enough, along with my pain meds, to maake my life almost normal. I was able to get out again and cycle for 30-40 miles a week. I know from reading a lot of these posts that not everyone will get noticeable pain mitigatin from a scs. No one seems to be able to explain it. Again, did you have the trial and what kind of relief did yoy get?

BTW... I had a pain pump implanted last year. It is supposed to give 87% of users decent pain relief. Well, I guess that I'm in the unlucky 13% who don't get relief. Boo-hoo! lol

Did you end up getting the SCS? If so, how is it working for you?

No, I never got the SCS. I was referred to a Neurosurgeon who performed a Laminectomy on me first, followed by a L3-4-5 spinal fusion. I am currently 4-weeks post-op from the surgery.

How are you feeling at this point? I'm 9 months out from my L4-5 fusion, and having low/right back pain. I've tried epidural injections, nerve blocks, etc, and think an SCS is my last option. I think it's due to scar tissue formation.