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Bad Ending To SCS Trial Wish I Would Have Known About Tailbone Pain

jayciejcjjayciejc Posts: 59
edited 06/11/2012 - 8:55 AM in Spinal Cord Stimulation
I just finished my SCS trial yesterday. I did have at least 50% pain relief in most areas, but not the one I wanted the most. It didn't help me at all with my tailbone pain when sitting. I thought I had been very clear to both my doctors and the rep that was the reason I wanted one the most. Yesterday when it was being removed, I was told that it doesn't help tailbone pain and I need to see a neurologist about different pain meds that would help my nerve pain more. So even though the SCS did help, it didn't help me enough to go through paying for it and having another surgery right now. I want to be able to sit for more than 30 seconds without the burning, pounding pain. The doctor wants me to go on Methadone to see if that helps. So now it is a wait and see time again. Anyone else have this problem; or is there anyone that the SCS did help their tailbone pain?

Jan

I have so much hardware in my spine, and have had 3 revisions, that I need to sit down with my doctor sometime and find out exactly what I have inside me now. I did know, but didn't write it all down. I know I have at least 4 rods, some plates, cages , 4 screws that aren't included with that hardware, and who knows what else. I have at least 11 different levels that have hardware. I have DDD, spinal stenosis, arthritis, and other spinal problems. I just finished my SCS trial that started out great, but ended poorly. I kept thinking it would start helping my tailbone pain, and it didn't.
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Comments

  • Sorry that your trial didn't work out as well as you would have liked it to. The important thing is making the right decision and not just going head and getting the SCS in hopes it may eventually help. At least now you know that you tried and you know what does or does not work.

    Best wishes,

    "C"
  • Thanks I am glad that I did the trial and found out it does help some of the pain. But until I can get to the point where I can sit, it isn't worth getting the SCS. But you don't know until you do try! I do want people to know that it DID help my lower back and hip pain. clear down to my toes. So if that is the pain you are having it is worth the try. Anyone had their tailbone removed? I don't have any butt at all already, so am kind of unsure if I would want to do that. Butt implants anyone, LOL!

    Jan

    I have so much hardware in my spine, and have had 3 revisions, that I need to sit down with my doctor sometime and find out exactly what I have inside me now. I did know, but didn't write it all down. I know I have at least 4 rods, some plates, cages , 4 screws that aren't included with that hardware, and who knows what else. I have at least 11 different levels that have hardware. I have DDD, spinal stenosis, arthritis, and other spinal problems. I just finished my SCS trial that started out great, but ended poorly. I kept thinking it would start helping my tailbone pain, and it didn't.
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  • Sorry it did not help as much as you thought. I had same problem. It helped a litle just not enough . But as they always say it helps mostly for pain going to legs not for back pain is what i was always told. And most of my nerve burning is in my back. If all fails we can always re visit geting it put in is how i see it also. I would rather put it in knowing for sure no other surgery can make it beter to some level so scs wont be in the way. Good luck
    Flexicore ADR 2004 resulting nerve damage l4l5 Fusion 2006 same level, 2009 hardware removal with lami !
    2012 scs implant ,
  • C. I know you have had success with the scs and was wondering if you heard of scs lead put in the scalp and other one in the spine? I know triple adr. Mike mentioned he is having this done 2 scs put in. I asked my pain dr about but he knew nothing about it doing it like that for pain control. Only for epilepsy and other condition as such. So i was curious if you knew of this new procedure? Sounds very interesting and posibly promising from the way mike described it. Could this be a beter solution then what you have now for some of us?
    Flexicore ADR 2004 resulting nerve damage l4l5 Fusion 2006 same level, 2009 hardware removal with lami !
    2012 scs implant ,
  • Thanks for writing. I knew yours had been unsuccessful too, but not for the same reason as mine. The post you sent to C on here is interesting. You would think they could think of something to help. It is strange that my trial did help my lower back pain some and clear down to my toes, but not my tailbone. When the doctor told me that they don't work on tailbones I was kinda floored. I had made it very clear that what I wanted help for the most was my rear end so I could sit.
    Have you ever been on Methadone? That is what they are talking about putting me on now. Also I am seeing a neurosurgeon as soon as I get approval to see if she knows of anything that will help the tailbone nerve pain. I have even been told that I could have my tailbone removed. I don't know if that would help or make things worse. I don't have anything but bone back there now, so I don't know how easy it would be to sit. Plus I am afraid that it could cause more nerve damage. The only surgery I had that relieved some pain was for L2 which had been pushed in and was squishing all my nerves. That one little area isn't quite as sore now. But every other surgery just stabilized my spine, not give me any pain relief. Most people think since I have had surgery it should be all better so why need pain pills? Ignorance is very abundant.

    Jan

    I have so much hardware in my spine, and have had 3 revisions, that I need to sit down with my doctor sometime and find out exactly what I have inside me now. I did know, but didn't write it all down. I know I have at least 4 rods, some plates, cages , 4 screws that aren't included with that hardware, and who knows what else. I have at least 11 different levels that have hardware. I have DDD, spinal stenosis, arthritis, and other spinal problems. I just finished my SCS trial that started out great, but ended poorly. I kept thinking it would start helping my tailbone pain, and it didn't.
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  • If we lived in a perfect world then yes surgery would of fixed us. Sadly this wold is far from perfect and only people that dont understand whos life is so perfect they dont even realise how lucky they are.

    Surgery never means person is now in perfect condition. Thats only in the movies and people just have to pull there heads out of there ass to realise it. There hopefuly is a way to fix the tail bone pain without removing the tail bone. Hey just have to find the cause and then maybe you can get the scs and do much beter. Good luck
    Flexicore ADR 2004 resulting nerve damage l4l5 Fusion 2006 same level, 2009 hardware removal with lami !
    2012 scs implant ,
  • It isn't really all that new, they have been doing Occipital Nerve Stimulators (lead placed under scalp) in conjunction with Spinal Cord Stimulators for quite some time. They also do Peripheral Nerve Stimulators (lead placed over peripheral nerves)in conjunction with Spinal Cord Stimulators. We have two members who have these types of setups for their pain management.

    "C"

  • I sure do wish it were a perfect world, especially when it comes to us spineys! To get pain relief would be such a good thing. Even to get non spineys to understand that we ARE in unbelievable pain would be nice too. I will keep seeking a solution for my tailbone pain as long as I can. I have to stop my insurance, so am hoping I can get on medicaid soon. I know if I am able to, it is going to take a while. I also know that I have so many levels that are affected in my spine that it is going to be very hard to find a way to relieve all the different types of pain I have. So back to lying down on my bed and hoping for some sleep tonight.

    I hope you are having a little bit of a better day/night yourself.

    Jan

    I have so much hardware in my spine, and have had 3 revisions, that I need to sit down with my doctor sometime and find out exactly what I have inside me now. I did know, but didn't write it all down. I know I have at least 4 rods, some plates, cages , 4 screws that aren't included with that hardware, and who knows what else. I have at least 11 different levels that have hardware. I have DDD, spinal stenosis, arthritis, and other spinal problems. I just finished my SCS trial that started out great, but ended poorly. I kept thinking it would start helping my tailbone pain, and it didn't.
  • I've had a partial Coccygectomy due to multiple fracture incident. Dealing with pain is a daily (ok, constant) issue. I've had multiple Ganglia Ablations EDITED (look up "Tailbone doctor"). They work.. for awhile but then it comes back. he suggested alternatives. SCS was one to research. sound like from these discussions they may not be long lasting in relief.

    Anyone had Coccyx removal (partial or complete) and had this done? What was the result?

    Also, I suggest folks keep digging, ask your Dr. to get Ct scans and go over them in excruciating detail with your Dr. We did this after several MRI's and X-Rays and "just" yesterday found a small fragment that just ... might ... be contributing. This after years of not finding anything from other image studies and Dr's looking at the same CT scan.

    Anyway, thanks for any info you can provide.

    Post edited to remove name of medical professional and or facility. by The Spine-Health Moderator Team
  • *I realize the poster asked this question a long time ago but just in case someone else may be looking for the same info I figured I'd weigh in.*

    I guess I'm one of the lucky few that gets tailbone pain relief from the SCS. During the trial I had perfect tailbone coverage but after the perm implant it took program tweaking to get it again.
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