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SCS pain coverage issues

245

Comments

  • I know some folks have good and bad experiences with different brands and different docs and different reps. I don't think it is brand specific, but more doc and rep specific. The doc that did my SCS, uses several different brands and works with numerous different reps, even different reps from the same company.

    I did my homework and listened to what the doc and rep had to say and I went in with the expectation that I might get help with the nerve pain and that was it. Well the nervous system is a weird and not really fully understood thing. So depending on the individual, their back or neck or head pain may or may not be due to a problem with the nerves or not. So many times, people have mechanical issues brought on by nerves that create muscle spasms and it cascades from there.

    I have cervical dystonia and when I shut off my SCS, it doesn't take but just a few minutes before my neck starts trying to twist my head around. (no Linda Blair jokes) :-) This just caught everyone by surprise, because the SCS isn't supposed to really help with this sort of thing. My point is, no one really knows just exactly how much an SCS will or won't help, until it's in and functioning for a while. Even the trial isn't enough to tell just exactly how much an SCS will or won't help.

    So if you have a "successful trial", you may be surprised at the fringe benefits the SCS provides a little ways down the road. I was and I am very grateful for it.

    "C"
  • j.howiejj.howie Brentwood, Ca., USAPosts: 1,745
    Hi jeni333,
    I have exactly the same as you except mine is ANS unit. I got it put in in 12-05
    I have heard about new Leads by ANS called Tripole 16C. I'm going to my p.m. Doc. And try to get information and another X-ray or cat scan to see if there are any problems with the unit, the leads, or anymore damage. You know M.R.I. Is out.
    If I can't get any kind of good feedback. I'm going to have them pull it out. Even though I'm afraid to have any kind of surgery at this point. I think it's causing more pain than its curing!
    Good luck, Jim
    Click my name to see my Medical history
    You get what you get, not what you deserve......I stole that from Susan (rip)
    Today is yours to embrace........ for tomorrow, who knows what might be starring you in the face!
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  • j.howiejj.howie Brentwood, Ca., USAPosts: 1,745
    I had more success with my trial, than I did with the permanent. Go figure! And I've had more adjustments and tweaks than I care to try to count!
    Good luck, Jim
    Click my name to see my Medical history
    You get what you get, not what you deserve......I stole that from Susan (rip)
    Today is yours to embrace........ for tomorrow, who knows what might be starring you in the face!
  • just discussed this with my programmer last week. When I had the SCS permanent and trial, I only had radiating nerve pain. I honestly reported no back pain, BUT I was reclined 23 hours a day, unable to do much of anything.

    Now that I've had the SCS for 6 months, I have quite a bit of back pain and lately, it has increased. I met up with her to discuss this and see if she could tweak my programs to help. We talked a LONG time. Here is what I learned.

    Leads have to be up around T-9 to get any real hope of back pain relief, and this only helps if the back pain is the result of Post-Laminectomy syndrome, which is nerve pain. Any mechanical/muscle back pain will NOT be helped by the SCS unless by pure accident/luck. The SCS is designed to block nerve impulses, to "trick" the brain/nerves.

    Like ernurse, I realized I only have back pain because I am doing so so so much, which is such a blessing. The programmer talked to my PM doc and they are trying me on a new muscle relaxer to see if this will help calm down my back. (I used to take Soma, which was amazing pain relief, but my clinic discontinued prescribing it. We have not found something yet that works as well.)

    My leads (both) are down almost out of the epidural space and are way too low to have any hope of residual back pain relief. And I am ok with that, because I can just calm myself down, sit for a few days, and my back feels better.

    Before the SCS? I had 24/7 burning,searing nerve pain that never went away, never calmed down, never lessened. I didn't want to live most days. Even if I could go back to day one of the trial KNOWING that I would never get back pain relief BUT I would have greatly increased back pain, I would do this all over again. There is nothing like the relief I get from the radiating nerve pain. And if I turn the SCS off, I get pain again in minutes. Literally minutes.

    I talked to my programmer about "Field Stimulation", which I recently read about. This is where they take the SCS leads and put them directly on the muscles/nerves that hurt. She said there is great controversy, because if the SCS works by blocking pain signals in the spinal canal, then how does putting them directly on muscles/nerves help? She said they are lacking a scientific explanation for why patients are receiving relief from "field stim",when the whole point of SCS is the spinal canal route. But the fact remains that patients ARE reporting great relief with field stim.

    She said that since my leads are SO low, much lower than normal and are at the end of the spinal canal, I might be getting some "field stim" as my leads are close to the S1 nerve coming out of the spinal canal. I found that very interesting. I refused to leave the operating table until I buzzed exactly where I hurt and highly recommend everyone do that. Do not let the doctor tell you that the programmer has magic power and can make you buzz somewhere other than where you are buzzing at the placement. (That happened during my trial.)

    So, if my back pain is ever determined to be nerve related/failed laminectomy syndrome, I will be looking at a second SCS, implanted higher, to try to address that NERVE back pain. One must determine if their back pain is muscular or not. If you wake up stiff and in pain, but get better during the day, she said that is muscular pain and will not be helped.

    I definitely recommend talking in depth with your programmer. And I am speechless your doctor did NOT tell you this is for radiating nerve pain and not back pain. Again, some patients do get relief, but it is bonus/accident/luck.

    Meydey, for people who have 50/50 back/nerve pain, even for me I would choose the SCS. Getting my 24/7 burning nerve pain removed has been AMAZING. My life is entirely different......and I am so thankful. I choose to deal with the back pain, because it is a result of the great blessing of the SCS. I had no back pain when I couldn't move. It's a give and take I treasure.

    Have you turned off your SCS for a few days? That will help you decide if the SCS is worth it or not. For me, it just takes a few minutes, for some people do it for a few days. It changes their outlook entirely more often than not.

    Take care,

    Cheri
  • No matter what your condition it seems that getting proper treatment is key. The SCS will only do so much, most of that nerve pain related. Some people do get relief from things the SCS should not help them with. Those people are blessed.

    The rest of us, well we have to struggle through a rat nest of doctors and ill fitting treatments, leading to confusion and lack of proper care....

    Wow, someone took a bitter pill this morning.

    My SCs is like what I see the majority of people say. It works on the nerve pain, the mechanical, muscular problems go untouched. My PCP is not help at all right now. My PM has mysteriously been moved by my insurance carrier to "out of network" requiring me to get approval before I can go in to see him about ANYTHING.

    This leaves me with back pain, shoulder pain that sometimes is covered by my SCS, sometime not, and a major case of depression.

    I don't regret the choice of going forward with the SCS, I had no other options in front of me. I do regret not insisting on one more MRI of my shoulder to make sure nothing had changed since surgery. I do plan on talking to my PCP and insurance carrier about WHAT THE $#!^ I am supposed to do about proper PM care. I already have an appt with my shrink...
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  • I think people (including SCS reps) tend to forget that regardless of the source, pain is nothing more than an electrical impulse - biologically speaking - and that all pain impulses are transmitted to the brain for processing by way of nerves.

    Because all pain impulses travel on nerves, the SCS has the ability to scramble pain from any source, if sufficient levels of stimulation can reach the specific nerve(s) through which the impulses are traveling. For that reason, coverage is not only impacted by the vertical level of the lead placement, but also by the depth of stimulation.

    I think people also have a tendency to forget that the spinal cord is actually a bundle of individual nerves, much like a handful of dry spaghetti, not a single object. If the stimulation can't penetrate deep enough to reach the nerves toward the center/back of the bundle, then a person won't have effective "scrambling" of the pain signals traveling on those nerves.

    Recent research shows that people with low back/trunk pain that have implants with paddle leads (and more specifically, tripolar leads) have better coverage of low back/trunk pain, because the stimulation penetrates deeper into the spinal cord.

    This is where having an experienced physician comes into play the most - and also where recognizing the "most experienced" physician isn't necessarily based on the number of SCS implants a doctor has done. It's also where having an experienced programmer can improve things dramatically.



  • Nicely stated. People tend to forget that signals to the brain can and are quite frequently "interfered with" in order to block pain signal transmission. For instance, if someone's hand starts to hurt, one of the first things that that person will do without thinking, is rub the hand. In essence they are blocking some pain signal transmission, by introducing a signal of a different type in the same general location. It's the same as when a dog licks their paw when it is hurt. If a person gets a headache (a normal type headache not a migraine), they tend to rub their head without even thinking about it. It's all a natural way to trick the brain to reduce the amount of pain it is sensing.

    You're right about the doc who does the implant. That doc needs to understand what is going on more so than just having experience placing the units and leads.

    And not all reps are alike and definitely not all reps understand how to program for different conditions.

    "C"
  • I would recommend a doctor who also does research into pain and pain management as a start to that doc "understanding" what is going on with pain in general.

    It seems too many docs are jumping on the band wagon, learning how to install an SCS percutaneous lead and trying to get more and more patients to try it. And then if that patient encounters a rep/programmer with less than stellar programming abilities, it can be sad indeed. I know every few months, my rep goes off for a week at a time for more training but I'm not sure what is "normal" for the average rep. This could be, I don't know.

    I don't believe there is anything we can personally do to educate any certain doctor. What we must do is research and find the best doc we can find.

    Take care,

    Cheri
  • As Cheri pointed out, there are many docs who are dabbling in the implant realm these days, but not full time and not fully aware of what they are really doing. The pain clinic I go to is staffed by several docs who are there running the department while others rotate through for the hands on experience.

    I wouldn't want a doc with just a clinical "stick and go" frame of experience conducting my trial and especially doing the permanent implant. While my PM doc is not a full time neurosurgeon, he participates in a lot of neurosurgery in order to better understand the whys and hows of of the spine and it's complications. He really strives to understand the situation surrounding each of his patients and how his action or inaction can and does effect their lives. He cares.

    Those are qualities I feel a doc should have if doing any sort of procedure on me. Knowledge, experience, compassion and determination. Without that, forget it!

    Also humility. The doc needs to be humble enough to ask for assistance if required.

    The doc also needs to have a good relationship with the company reps. Without that, the reps don't want to hang around very long and that's when things get rushed.

    The relationship between my PM doc and rep is outstanding and I know I benefit greatly from it!

    I hope this makes sense. I'm exhausted and heading off to bed. I'll check back in the morning and see if this helps explain my comments better.

    "C"
  • C, would you please elucidate what we should expect our doctor to understand?
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