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need a specialist for spinal cord stimulator revision

My husband has had low back and facet joint issues for years that started with a herniation at L4-5 in 1998 which was non-surgically managed with LESI's and radiofrequency ablations for many years. He took the occasional pain pill but managed pretty well. In Jan 2008 he reherniated L4/5 and also L5/S1. He tried oral pain meds/LESI's/physical therapy for 4 months but the amount of pain meds he was needing was crazy so we opted for a discectomy. His rehab went well until about the 6 week mark when his pain began to get progressively worse with the predominant pain involving his left leg all the way down to under his foot. He has had CT/MRI's and myelograms w/ a consistent dx of epidural fibrosis. He was tx w/ more LESI's, epidural adhesiolysis, and enough pain meds that his liver enzymes started to rise.

At that point we dealing with a pain management duo of anesthesiologist and neurosurgeon and opted for a SCS (Medtronic was what they used). The trial with percutaneous epidural leads was so encouraging and with what I know now I would encourage any one taking this route to go with burying the leads during the trial so that you have the option to keep the same leads if you have a good result. However, we were encouraged to go with paddle leads because of his age (49 at that time) and his desire to return as much as poss to his previously active lifestyle. They removed the percutaneous leads and attempted to place paddle leads at T7-9 which was not anywhere near as successful apparently due to a curvature of his spine at that level, something I have since been told should have been able to have been overcome. They tried to compensate for the less than adequate stimulation by placing an additional percutaneous lead at a later date which is lower than optimal because of the presence of the paddle lead. The result was some relief of his leg pain but no relief of the facet pain that they had hoped to get. They then placed a peripheral lead across to the left facet area, again with some relief. By this point the generator had been exposed 3 times and he now had 3 different back incisions.

Unfortunately the relief has never been enough to allow him to resume anything close to a 'normal' lifestyle as he has trouble walking any distance or sitting/standing for any period of time. Not wanting to tax his liver again with oral meds we opted for a fentanyl patch. This was probably the most helpful thing we have done but only to a point. He is able to function around the house but any exertion beyond this aggravates the pain. He has tried biofeedback, hypnosis, acupuncture, topical concoctions of muscle relaxants, ketamine etc etc...in other words we have been open to anything. At this point, 4 years later, he is feeling a sense of finality, as if this is as good as it is going to get. He has been on wellbutrin for a few months, both for mood and hopefully to also help the pain and recently his family practice doc decided to change him to effexor XR. Research on that is a scary thing and I would appreciate any feedback on anyone's experience with this drug as I have read some nightmare stories regarding side-effects and trouble stopping taking this drug, none of which was mentioned to him by his doctor.

My husband is at the point now that he is willing to entertain a suggestion given to us a year or so ago... that he completely revise/replace the spinal cord stimulator and change to a Boston Scientific system. However, this time I want to go with someone highly specialized in the field of spinal cord stimulator placement revisions, and I don't care where we have to travel to to get this done. Does anyone have any suggestions or experience with someone they could recommend.

Michelle Marshall


  • backbback Posts: 190
    edited 01/20/2013 - 6:11 AM
    Has he considered having the 2 levels fused? I'm just wondering if they stabilize his lower back that he would be able to enjoy a better life. From what I understand, a stimulator is primarily for the treatment of nerve pain. It sounds like your husband has a lot of mechanical type pain in addition to the nerve pain. Just a thought.

  • kiwivernkkiwivern Posts: 4
    edited 01/20/2013 - 9:14 AM
    Thanks for your response. We actually did just have an eval w/ a different neurosurgeon, one whose opinion I trust as I work w/ him but who does not do SCS. He was the one that ordered the myelogram and his answer was that surgery would be of no help. It is an interesting thought tho, what you say does make sense but I see so many failed backs, or those where fusing levels places additional stress on adjoining levels which then need fusing......and on it goes. That was why we opted for the discectomy in the first place..... now I wonder if we did the right thing but it is what it is now.
    Michelle Marshall
  • Michelle
    Has your husband tried pool therapy. I go twice a week through a program with the arthritis foundation and the cost is great.
    Its only $36 for twice a week for six weeks.
    I sent you a PM also no need to answer just something to think about

  • BadCo.BBadCo. Posts: 2
    edited 01/30/2013 - 4:10 AM
    Doctor EDIT in Denver, Colorado has done between 7-8,000 stimulators and many papers on spinal cord stimulation. I had several stims put in me over the years and my scar tissue built up to where the other surgeons would not touch me and Dr. EDIT spent 3.5 hours cutting scar tissue to redo my implant. The little Italian Dude is a great Doctor with a great bedside manner..He is worth every penny as I went from Idaho of the Doctor doing a couple stims weekly and finally reaching hundred as stim implant Doctor. Also stim Doctors turnover rate changing to where it was hard to find a doctor to deal with it and finding 2-3 names per year within the State to deal with surgical leads. I have been at this since 1982 and retiring on disability from teaching senior high school government in 2011. My quality of life is being in bed now from RA and osteo along with nerve damage of the legs from an early sawmill accident. Also I have been to Mayo Clinic and several other big medical facilities and in the Operating Room 62 times over the years. The drug pump failed on me and so has the stim lately. I take handful of pills daily like Elvis. Give EDIT a try as he will try to find something for you and won't blow smoke. Good Luck!

    Post edited. Forum rules prohibit the naming of specific doctors.

    Michael R. Knutson
  • Also the person saying the stim was only for the legs is wrong as the wires can be placed anywhere on the spinal cord
    with all kinds of lead setups. Mine was set up for legs and lower back and still was not using all of what the machine could do. Mine covered all of the Thoracic & the lumbar taking in the right leg to below the knee. The technology changes faster than most people get changes in their stims. I happen to get only short term with them as I was always breaking wires and needing new wiring harnesses. So I was always getting the new technology and using more of it as my spine is full of osteoarthritis. Thanks! BadCo.
    Michael R. Knutson
  • SueDSSueD Posts: 545
    edited 02/04/2013 - 1:01 PM
    I don't know anything about the Boston Scientific device but I do agree that, if your husband has not got 100 per cent faith in his current surgeon/scs device, then seeking a second/third opinion is only a good thing.

    For me personally, I was originally referred to a nuerosurgeon to be considered for the Medtronic device, but he said it would not be suitable for me. He then recommended the new Nevro Stanza scs device and I started the trial early in December. I think its only been available since April last year and there isn't much information on the website about it.

    The Nevro tackles back and leg pain at the same time and, because it operates on a much higher frequency than the Medtronic, it cannot be felt at all. Because of this, it is safe to leave it on 24/7 - even when driving and can be charged up each day, as required.. Hopefully, I will be having it permanently implanted next Wednesday.

    I do hope your husband can fix up some appointments with other surgeons in this specialty so that you both have more information, have all your questions answered and are able to make a more informed decision. Please let us know how he gets on ok?
    2 x Microdiscectomy 2005 / PLIFusion 2-level 2010 / revision surgery 2011 / NEVRO Senza spinal cord stimulator implanted February 2013. I WILL NOT GIVE IN / UP !!
  • It's the Nevro "Senza" device that I'm having.

    Also, I'm having a bad day painwise, so I'm not responsible for my muddled brain!!!! Ha. It's happening alot lately - another reason why pain relief from the Nevro would be a blessing, because then I can try and reduce the medication I take. Fingers crossed.
    2 x Microdiscectomy 2005 / PLIFusion 2-level 2010 / revision surgery 2011 / NEVRO Senza spinal cord stimulator implanted February 2013. I WILL NOT GIVE IN / UP !!
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