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SCS and Neurosurgeon advice

backpain3bbackpain3 Posts: 45
edited 06/11/2012 - 7:47 AM in Spinal Cord Stimulation
So. I visited my NS for my 9 month followup today. I have ended up with drop foot and severe radiculopathy since my fusion surgery last December. My pain management doctor has told me that SCS is my best route to take. Unfortunately my NS who is probably one of the best in Florida told me today, that with the amount of scar tissue that I have developed sine my surgery in Dec 09, he would not recommend SCS. His concern is that I will develop more scar tissue that will end up disabling me more than I am currently. He stated that he has never seen the amount of scar tissue develop in 6 months that I have in 30 years of practice. He told me he has been always been against a diagnosis of arachnoiditis but he would document that is what I have. So, now I am in a catch 22, my PM wants SCS, but NS says now way, too risky from what he has seen develop, but still my decision. Catch 22, right?? Thanks for any input, I guess the decision is mine.
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Comments

  • I would definitely say that your description of a Catch 22 is pretty daunting. What comes to mind is that when I had my leads placed, the doc could feel the scar tissue and used percutaneous leads so he could thread them through as much as possible. Don't know if that is something that might work in your situation. Is it possible that your NS was thinking of the SCS using surgical leads aka paddle leads? Thinking out loud, I wonder if your PM doc or NS would be open to discussing the potential issues with both types in regards to your specific situation?

    Since you are in a Catch 22 decision heavy status at the moment, I wonder if discussing the difference between the leads would be worth it or not. Wonder if it might shed more light on the issue for you.

    SCS therapy is one of the recommendations I've seen for the treatment of Arachnoiditis. Dave has a lumbar SCS and he also has Arachnoiditis. I bet he would be more than willing to share his experience and his personal feelings about the risk he took getting an SCS knowing the risk.

    Sorry that this heavy weight has been thrown your way recently. I hope that some how there will be a silver lining to all of it.

    Kindest Regards,

    "C"
  • I would like to thank you in advance for all of the help you provide to all of the members on this site, you certainly make it work. My SCS would be a Boston Scientific which I beleive does not use paddle leads. My PM has already told me previously that with the amount of scar tissue that he had some doubts about it working for all of my issues, ie. both legs, feet, buttocks and back. But he hopes that I would get some relief somewhere. I am still up for trying the trial, as at this point I am not ready to give up my life, I am only 49, and I have young children that miss Dad. My wife will not be happy with my decision as I also have heart issues and plavix which kept me in Intensive Care for 2 weeks when I had my last fusion. I have tried to keep my mind away from the Arach problem, but I probably do need to talk to Dave about it. I had 3 myleograms done back in 1981 while in the Army, and also Papaya injections when they thought it would dissolve disk problems, my roommate actually died from it and they stopped the trial. Thanks again!!
  • Back,

    Enjoyed chatting with you tonight!!! So sorry you are going through all this. You are going to have to go with what your body tells you, and too what you and your wife discuss - as it is between both of you. I hope you find something that gives you some relief. You're good people. I will send positive thoughts and energy your way. *HUGZ*

    Brenda
    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • You definitely have a predicament there. The one thing that you need to consider in your decision is where they place the leads. My AA involves the L4,L5, and S1 nerve roots and a bit of L3. I have back pain, but consider that to be a nuisance in the grand scheme of things. I have two leads that are placed at T11/T12 for the right lead and T12/L1 for the left lead. My leads are little lower than normal placement because I wanted coverage all the way to my toes. Normal placement is higher up, somewhere in the T8/T9 area.

    My stimulator does not reach everything. It covers about 40-50% of my pain. I get great coverage in my calf's and toes and everything else is marginal. I still take narcotics every day, but really strive to keep the dose very low being that I will be taking them for the duration and I do plan on hanging around another 30+ years.

    It's hard not to think about the AA when its their 24/7. I understand that. I also have some drop foot in my right leg. It was really bad at my 9 month mark and I opted to have my hardware removed which helped a lot. I didn't have the AA diagnosis at the time of my hardware removal, so knowing what I know now, I'm not sure I would have had that surgery. I had other issues cause I failed to completely fuse. My surgeon also did a facectomy at L4/L5 and L5/S1 levels which really helped my back pain.

    I work very hard to maintain muscle tone in my legs so as to not exasperate the drop foot. If you're like me, you may have issues with things touching your legs. The stimulator will do nothing for that, at least thats the case for me. I've recently switched out all my socks to diabetic socks. Much more comfortable. I also purchased a pair of Sketchers Shape Ups to wear when I walk (that's my workout). They allow the foot to roll as you walk rather than that slap, slap, slap when you step. Problem is they are heavy and are not good as an everyday shoe. Maintaining muscle tone and stretching is really important. You need to keep the nerves moving as much as possible. I hate working out every day but its a necessary evil.

    Feel free to PM me with any questions you may have.

    Dave
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