advertisement
advertisement
The Veritas Health Forum is moving! On September 30, 2020, this Forum will no longer be available. Please read important information about the changes here.

Experiences of High Cervical SCS Lead Placement

I'm looking for any experiences of SCS (spinal cord stimulation) where the leads were placed in the neck.  Because of multiple level long term nerve root injury in my neck and significant spinal cord bruising observed during one of my fusions, my functional neurosurgeon is recommending an SCS implant where the leads would be placed at my C2 level.  The idea of leads that close to the base of my brain is giving me significant concern.  What if the leads were to move?  When I asked the neurosurgeon, "why he has to go so high in my neck", he replied, "to get the benefit of the SCS, he has to get the leads between the nerve roots/spinal cord bruising and the brain".

advertisement

Comments

  • memerainboltmemerainbolt IndianaPosts: 4,718

    stiffneck7

    I do not have an SCS but I do have a pain pump. Before the implant, my neurosurgeon was explaining to us where everything was going and why. The catheter was placed at T10. I thought it would go higher. His response was he did not want anything that close to the brain.
    I am dealing with morphine and you are dealing with electrical impulses, so there is a difference. I just wanted you to make sure you have all of your bases covered with your doctor.

    Good luck and please keep us posted.
    Sandra
    Veritas Health Forum Moderator

  • Sandra - I have not researched a pain pump, but it is my understanding is that with a pain pump, it is metering medication directly into the dural sac around the spinal cord so the place where the medication enters the dural sac does not need to be between the brain and the source of the nerve pain.  My neurosurgeon replied to my question of, "why so high in my neck" with "the SCS leads need to be placed between the source of the nerve pain and the brain".    

  • advertisement
  • I am scheduled to have Phase 1 of the high frequency, high cervical SCS implanted on Tuesday, Oct 1.  The functional neurosurgeon is planning to implant permanent leads at C1/C2 with an external trial battery/generator.  I spent a lot of time researching the procedure and asking the neurosurgeon a lot of questions.  I'm at peace with myself that it is time to give it a try.

  • memerainboltmemerainbolt IndianaPosts: 4,718

    stiffneck

    I have never heard of one of these being implanted so high. I wish you the best of luck in surgery as well as recovering.

    Take care of yourself and please keep us posted when you feel better.
    Sandra

  • Sandra

    This technology has been approved in the U.S. for about five years.  the technology has been been in use in some European countries for about 10 years.  Per the functional neurosurgeon scheduled to perform this SCS implant for me, percentage of high cervical implants is still low as compared to the overall SCS procedures, but with the high frequency technology (HF), he claims the "success" percentage to date has been very good.  I was able to confirm his claims based upon independent studies.    He has performed a significant number of high cervical SCS implants using the HF technology.

    I plan to post updates (good or otherwise) as I am able.  

    stiffneck

  • advertisement
  • memerainboltmemerainbolt IndianaPosts: 4,718

    stiffneck

    I am so glad you have done extended research on this. And thank you for explaining this as you have,

    Like I said, I really hope this works for you.
    Sandra

  • stiffneck7,

    I've been browsing the internet in preparation for my upcoming SCS surgery in a couple weeks. I joined this board specifically so I could reply to your post. I have a cyst, called a Tarlov cyst or perineural cyst, on my spine right around C2 that involves some nerves and spinal fluid. It gives me near constant neck discomfort and headaches of varying intensity. 

    I had the SCS trial put in at C2 last month. The docs were hoping to get it all the way to C1, but the wires didn't want to cooperate and they didn't want to force it. The trial went smoothly and I had better relief than most anything else I've ever tried. When I cranked up the stimulation I was able to feel it to varying degrees in other parts of my body, mostly my arms (sort of a pins and needles/vibration type feeling). Personally it's a tradeoff I happily accept if it means tamping on down my neck and migraine-like headache pain. 

    When I have the full implant at the end of this month they're planning on putting the paddles at C1, or as close as they can get to that. In my case, I was told they need it to be a little higher up than the cyst in order to interrupt the signals between the cyst and my brain. Sounds similar to what your surgeon told you.

    It seems cervical SCS are far more uncommon than lower back SCS, so I'm thrilled to meet someone else who is in the same boat as me (though I'm not thrilled that you're having to deal with neck pain, of course!). Please let me know if you have any questions about the process or experience. Happy to share!

    -bhk3

  • bhk3 - I'm sorry that I missed you update to this thread.  I was in so much pain that I forgot to check my own discussion threads. 

    On Oct 01, I had the the trial implanted, but the surgeon was able to get approval to implant the permanent leads as part of the trial implant.  The trial went so well, I had the remaining parts of the permanent implant performed Oct 15.  The unit was only powered up this past Monday, Oct 28. 

    I love this unit because I cannot feel anything when it is active.  It is know as paresthesia free, no pins and needles feeling.  The only thing I feel is the benefit.  I check my managing remote from time to time to make sure it is running and the internal battery is properly charged.

    When I asked my functional neurosurgeon about the percentage of cervical SCS units installed, he told me that the national statistics that he has read is about five percent.  He said that in his own practice, his numbers are also about five percent. 

    I wish you all the best in your procedure(s).

  • An update on my high cervical lead placement SCS.  It is now almost three weeks since I was allowed to begin powering up my permanent SCS implant.  I'd estimate that I currently have 60 to 70 percent relief of my cervical/thoracic spine and shoulder pain. 

    My short term frustration is that both the surgeon that did the implant and the hardware company rep want me to slowly increase the power level.  They are concerned I might "over stimulate".   It takes time to adjust to an SCS having pain and spasms for over two decades.  I'm being told by my surgeon to wait three months of positive progress before declaring the implant a success.  

  • Another update on my high cervical SCS.  I'm now walking three miles a day at a local publicly owned indoor roller skating rink on the parquet floor.  It is less shock to my 15 level fusion than walking on concrete or pavement.  Quality of life is still improving.  After many years of declining health, the recovery work is almost like full-time work. 

    I am pleased that many of my muscle spasms that I've had for decades in my neck and upper shoulders are starting to "break up".  I've been able to reduce my SCS stimulation levels to the range that my functional neurosurgeon thinks I should maintain long term.  Next week, I have another office visit with him to hopefully fine tune the SCS stimulation profiles (some people call them programs).

  • Hi Stiffneck7,

    My name is Pete and I have been recently told by my pain dr. That I am becoming a candidate for a scs for my neck; I have had an ACDF c4-c7 in 2010, and now it is starting to have very significant pain and weakness, inflammation etc. I too would need to have leads or paddles near c3-4 area etc. I would be interested in having this procedure. I would like to hear from you as well.

    Thanks

  • memerainboltmemerainbolt IndianaPosts: 4,718

    litlgrn

    While you are waiting on a reply, please check out the link below.

    Spinal Cord Stimulation (SCS)

    Take care
    Sandra

  • Pete

    Getting an SCS is NOT a decision to be taken lightly.  Everyone case that I know of, including my own case required psychological testing to determine if you are a candidate for the procedure.  If I were in your shoes, I'd ask why the use of paddles has been brought up as an option.  Several people on this site that had paddles installed and have reported significant post procedure issues.

    An SCS unit is NOT a cure.  Whatever injury you have at C3/C4, there will still be pain even after the procedure.  A 50 percent improvement in quality of life is considered a successful surgery.  The SCS technology is changing so significantly (several recent approvals by the FDA), it you can manage your pain with some level of success, I'd be inclined to NOT rush into getting an SCS implant.  I am not intending to give medical advise, but in my case, a new generation of technology of my device was announced a month after my implant.  I really could have used the enhancements introduced with the new model. 

advertisement
Sign In or Join Us to comment.