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Failing SCS Trial?

BrothersBBrothers Posts: 78
edited 06/11/2012 - 8:38 AM in Spinal Cord Stimulation
Hi, Everyone

We travelled 180 miles by train for my SCS trial at one of the most reputable hospitals in the Northeast. Since the laptop was too heavy to carry in addition to the rest of the luggage, I am using the hotel's ancient HP destop computer in a "business center". This hotel is a dump, but it is on a courtyard with a CVS pharmacy and a Whole Foods (aka Whole Paycheck) Market, and only two blocks (five-minute walk) from the hospital.

I was planning to write a blow-by-blow description of the whole procedure from my careful and copious notes, something I may still do, but I need help from my friends who have already been through this.

My doctors implanted one percutaneous lead on Tuesday afternoon, using plenty of Lidocaine but no sedation. It took awhile because I wanted coverage of my right leg from ankle to hip, and I would not get up off the table until they got the complete leg covered (as per Cheri's advice). After the St. Jude ANS rep gave me five programs, I staggered back to the hotel, still under the influence of the Lidocaine.

When the Lidocaine wore off, I felt like I had been kicked in the back by a mule. Wednesday, I took a couple of turns around the courtyard, still feeling like I had been kicked in the back by a mule. (Anyone remember Lionel Hardcastle's experience in Korea in 1952? But I digress.)

Thursday morning, with the back pain having subsided somewhat) we set out to do some serious walking. I walked to the nearest Ace Hardware and bought a grabber (also recommended by Cherish22). In the afternoon, we started out walking again. However, I noticed the right leg pain was getting worse. The SCS stimulation was covering more than the area from which I felt pain, but the stim did not seem to be masking the pain.

On the way back from the hospital Thursday afternoon, I noticed two types of pain (while stimulation was on). I had a mild stab pain in the center of my right knee. I also felt diffuse aching in my right thigh and gluts.

This morning (Friday), trying to walk again, the diffuse aching in my right thigh, gluts and outer hip worsened. So I went back to the hotel.

This afternoon, we met again with the ANS rep. She is a very nice former nurse, and we do like her as a person. My doctor says she is fully competent for her job. I asked about the frequency and pulse width of the programs she had given me, and especially about the one that gave the best coverage. Of course, I was not surprised when she told my it is her company policy not to tell the patient what the electrode, frequency and pulse width are for the programs, that the patient should just let the ANS rep give the patient some programs to evaluate. She programmed eight additional programs. I did get out of her that Prog. 7 was the same as Prog. 2 except with shorter pulse width.

As someone with 43 years experience as a practicing engineer, this is somewhat frustrating.

My ANS rep suggested that my aching muscles might have been the result of overuse, compared to the disuse during the three years since my back surgery left me with chronic pain in my right leg. Perhaps I could solve my nerve pain issue with a permanent SCS implant, and then get physical therapy to restore my muscles.

Here are my questions for those with SCS experience:

Does the SCS block some kinds of pain but not others?

If my aching thigh and gluts are due to overuse of previously idle muscles, why is it that the ache comes only from the stimulated leg and not from the other (left) leg? I don't favor one leg over another when I walk, I have not used my left leg any more than my right leg.

How long does it take during the trial to determine whether stimulation is effective in reducing radicular pain?


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134

Comments

  • You're crazier than I am. You do realize that you should take it easy the first couple of days so you can get accustomed to the stimulation. It sounds like you're pushing it pretty hard. You probably have everything seriously inflammed now. It took a couple of days before I noticed some improvement. My trial didn't reach everything but it did take care of some of my discomfort.

    Dave
  • Let me tell you what my new PM just told me why my stimulator failed me.
    I was told I was a perfect candidate for a stimulator because my pain is in my feet and legs BTW.

    A stimulator works by scrambling the pain signals to the brain. The brain does not recognize these scrambled signals as pain signals so you no longer feel pain. The pain is still there but you do not feel it.
    Some peoples brains figure out it is being "tricked" by the scrambled signals and figures out a way to work around these scrambled signals so it can continue sending the pain signals.

    As we all know the stimulator does not work for everyone and from what my new PM told me that is why.
    Hopefully this will not be your case and the stimulator will work for you.

    Best of luck
    Patsy W
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  • You are correct in your assessment that the SCS will cover some type of pain but not others. I periodically will get very sharp stabbing pain in my hip or feet. It is intense. I can feel it through the stimulation. I don't know what to make of the aching. Have you tried turning the stim off for a while? That can often give you a good sense of how much its helping. You could also see how your sore leg feels. Is your ANS rep printing up your programs? Mine always made a photocopy for me and had all the info on it so I don't think there is a rule against giving you that info. Plus HIIPA requires you to have access to all your medical records. How long is your trial? Be positive and don't talk yourself into a failure. Susan
  • it takes a year or longer for ones brain to "figure out its being tricked". Brothers, how did it feel when they first turned the device on? Did it feel good?
  • Brothers, a couple of things came to my mind as I was reading your post. The first (and somewhat embarrassing) is that I don't remember your overall pain pattern. If you could re-post that information, it would definitely be helpful to me and maybe to others, as well.

    The second thing was that I agree that your rep is blowing some smoke about telling the patient the details of the programming information. It's not like it's a trade secret or something. I know I'd be frustrated as hell too, BUT I don't think it's worth tackling that issue during the trial, because I think your time and attention is better spent evaluating the system and different programs. If you go forward with the permanent implant, you can nag your rep into submission later on. :))(

    I've been actively rehabbing (structured exercise) for over a year and have had many occasions when I've pushed my muscles too far. In general, my SCS doesn't cover what I classify as 'normal people' pain, which is the pain I would have from certain activities if there wasn't a single thing wrong with my spine/discs/nerves/etc. My SCS does not cover that "day after the gym" muscle ache and it never covers shin splints from walking too much, even when I beg. ;) It doesn't always make sense what it covers and what it doesn't, though.

    In my case, my left leg has been weaker than my right since my initial injury. Part of that weakness came from lack of use, but the rest comes from the nerve damage itself. Even when we're at rest, our muscles receive signals from the nerves, so they're are always active. When the nerves are damaged, they don't send as much information to the muscles, so that underlying activity changes and if it changes enough, it results in that loss of strength/function. Even if you were doing the same set of structured exercises, the loss of the involuntary/unconscious muscle activity can result in a difference in the overall strength.

    If you have more nerve damage to the right leg and your left leg is unaffected or less affected, it's very possible that the right leg is weaker and you'd have more muscular pain from overuse on that side. You'd have to consider if that seems like a possibility for you, in the light of your whole history.

    Also, for the purposes of this thread, it's worth knowing there has never been a documented case of habituation (figuring out the "trick") during the trial phase, because it doesn't last long enough. As Susan pointed out, it usually takes closer to a year of consistent stimulation for that to happen. It's also much less common with the multi-channel, highly programmable IPG's on the market, compared to the single-channel, less programmable devices in the "old days." I feel a full blown literature review of that topic coming on, but I'll post that elsewhere in our lovely new SCS home. @)
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  • Friends,

    Thank you for your responses to my questions. In response to BW, I will try to explain my pain pattern:

    Since my second surgery removed the nuclear disc material wrapped around my right L4 nerve root, I have had gradually increasing positional radicular pain in my right leg.

    I have been more lucky than some others with FBBS in that my pain goes away in the supine position. It depends what the pain level was before I lay down, but in 5 minutes, or 15 minutes, or half an hour the pain will diminish and mostly disappear. So I have never had much trouble sleeping. My trouble has been standing, sitting and walking normally. I could only walk about 15 minutes before the pain would increase to the point that I have to stop. Three days straight of walking 600 to 800 meters at a time recently increased my leg pain to the point that I was homebound for the next two days.

    Sitting has also been a problem. Sitting 20 minutes to eat cereal caused intense radicular pain that lasted three days.

    I have not had much trouble with back pain, at least not before this trial. As others have commented, lying on top of the lead coming out of the back in not comfortable, even after the pain from the mule kick diminished. I also now have a pain in my left lumbar region that increases and decreases in intensity. I hope that goes away when they remove the lead on Tuesday.

    The percutaneous lead was inserted last Tuesday. Wednesday, I resisted my wife's encouragement to walk around the city like a tourist. I just took a couple turns around the courtyard, amounting to maybe 200 m.

    Thursday, I walked 50 minutes in the morning. In the afternoon, I walked 15 min, then rested. Then 1 hour 20 minutes shopping. Dave, does that sound crazy?

    To answer one of Susan's questions, I do not find the stimulation annoying. As everyone knows, it is very positional, and I can turn is on and off by changing my posture. Excess lordosis will make it feel like I put my leg in a power socket. Slumping turns it off.

    On the other hand, I do not feel that any level of stimulation makes a dramatic change in pain level. I am sitting longer than usual to type this post, but that is about all I can say for it at this time.

    I greatly appreciate the advice of you people who have learned how to live with and benefit from SCS, and I will look later for any additional advice you might have.

    Thanks
  • I don't have too much more to add beyond what others have said here. However, I would remind you to pay close attention to how you feel after the trial is removed for a couple of days. I know for me it really helped to firm up my decision that the stimulation had helped with my pain.

  • Naw, you don't sound crazy. Still think you are overdoing it a little. I normally walk 2 hours every day. Sometimes the walk is relaxing and other times its a chore. During my trial, I cut back to 30 minutes each day. I had that pain in the lumbar region during my trial also. It wasn't debilitating, but it was uncomfortable. I had two leads, so got to feel it on both sides. This feeling will pass a couple of days after your trial.

    I am very envious that you can reset your pain levels by laying down. Early on, I would reset to low levels for the morning and gradually build up as the day progressed. Unfortunately, that is no longer the case for me as everything is on 24/7 now. Your pain description makes me go HMM. It sounds like something is pressing on the nerve when you stand or walk. I know you said you are not a candidate for surgery, but maybe a standing MRI wouldn't be a bad idea. Maybe you have something else going on in there. I'm not sure how well an SCS is going to work if you have a nerve that is still being compressed.

    Just trying to throw some thoughts and ideas over the fence to see if anything sticks. I got the idea from my neighbor who just blew all his leaves into my yard.

    Dave
  • I did not ask you if you find the stimulation annoying. I asked if when the device was turned on, it felt good as in a-a-h-h, like an itch being scratched. One of the reps who works with a local reknowned neuromodulation researcher claims that the two of them know whether the SCS is going to work for a particular candidate by how they first react the moment the device is first turned on. So, when it was first turned on, did it feel really good or not so much? Susan
  • I knew as soon as the trial stim was turned on that it provided me relief I wasn't getting from any other medical treatment, and my docs tried everything they had.

    When I began to over-analyze the way I was feeling or not feeling I nearly convinced myself that it was not working for me. I'm a techno geek and I have a tendency to look at things from the nuts and bolts level instead of how smooth of a ride it provides.

    Every time the rep turned the stimulation field off while setting up new programs to try, I felt like he was taking away the best thing that had ever happened to me. It was almost like the feeling of deflating a balloon. It was a serious sense of loss.

    Since you appear to over-analyze things like I do, something to keep in mind is the placement of the trial lead, the type of lead and the way the stimulation is being presented to your body. There's two basic types of neurostimulation, dorsal column and dorsal root. Depending on which is being stimulated, you can either feel relief or increased pain and spasm.

    This is why specialized paddle leads have been developed specifically for neurostimulation in the lower areas of the spine. These leads are designed to fit better in the epidural space of your spine, be far more stable and allow stimulation patterns to be programmed that target the dorsal column better and reduce dorsal root stimulation. I believe that BionicWoman has the Specify 5-6-5 Lead which is designed specifically for this reason. ANS has a lead that tries to do the same thing, it is the ANS Lamitrode Tripole 16C. The ANS lead has a much higher energy consumption level than the Medtronic Specify and requires far more frequent recharging.

    Regardless of the differences in the two brands of leads, my point is, that a single percutaneous lead used in a trial is not a good indicator as to whether or not good neurostimulation can be achieved for an individual. The programming options (neurostimulation patterns achievable) with a single percutaneous lead are far different than those with the tripole leads that can do a better job targeting dorsal column vs dorsal root stimulation.

    For my trial I had two percutaneous leads that were programmed to create different neurostimulation patterns, giving me a much more comfortable pattern than was achieved with a single lead.

    Something else to keep in mind, as pointed out by Dave, is that if your pain is mechanically generated, then an SCS may not be the best thing for you.

    The difference my trial stimulator made for me, was that I went from being unable to walk more than 30 seconds without it feeling like someone was standing on my shoulders with ice skates, to being able to walk as much as I wanted. My trial was only 3 days long and the difference was very obvious to those around me. Have you asked your traveling companion if there is any observable difference in you, the way you look, the way you walk, the way you interact?

    Good luck,

    "C"

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