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Anyone Have a DRG Dorsal Root Ganglion Implant?

Interested in the experiences of others who have had this procedure.
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Comments

  • SavageSavage United StatesPosts: 7,385
    Hello!
    Search may be helpful in finding information you want...while you are  waiting for responses from members with shared experiences.
    Sue
    Honorary Spine-Health Moderator
    -------------------------------------------------------------------------------------------------------------------------
    Please read my medical history at: Medical History

  • I just had this procedure. It has been wildly successful. I had nerve damage after a hip replacement - an apparently rare complication. I feel like I have my life back. The whole procedure (including the trial etc.) has taken months and been pretty harrowing at times. But worth it for me. I found it difficult to get answers to all kinds of questions at each step of the way.
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  • Seems like an old topic, but I haven't found any new ones so might as well contribute here.

    End of Jan 2019 I received a Proclaim DRG implant for Complex Regional Pain Syndrome (CRPS) in the stomach and right diaphragm. So far it hasn't provided 100% relief. Per the doctor and medical reps it can take anywhere from a few weeks to months to get to that point, if it happens at all. But in just over four weeks I'm down from an average 45mg Vicodin/day to 15mg/day, which is a huge improvement in clarity of thought.

    The path getting here was a long process. In Nov 2017 I had RF nerve ablation to resolve severe back pain, which worked great. In Dec 2017 I started having ER-levels of pain in my stomach and diaphragm. Initial diagnosis was need for gallbladder removal, which was done in Jan 2018. This helped for a few weeks, then pain returned and was even worse than before. 

    The entirety of 2018 was spent in a series of appointments with several doctors from a GI specialist to my cholecystectomy surgeon and eventually to the interventional pain specialist who did my nerve ablation. The interminable waiting and weeks between approvals and appointments was depressing, as was the series of procedures and other attempts to block the pain, none of which helped. With pain getting worse the whole time and ramping up from low doses of Tramadol to the eventual high doses of Vicodin most days were a challenge to get through. I was fortunate to be able to work from home most of the time so never had to go on disability.

    Eventually the IPS determined it was CRPS Type II. Nice to have a name for it but that didn't help. 

    It took a couple of months to get through the process for the DRG trail, which was seven days, the last two of which were wonderful. By that time it was Dec 2018 and It took more than a month to get approval for and schedule the actual implant, which was the implantable generator and four leads, two each sutured in place on either side, in ganglion sites at T7 & T8. Due to some arthritis in my back, the first lead took over an hour to place; the other three were done in about fifteen minutes, total. Still, with the nerve mapping that was done beforehand to confirm the lead sites, total time in surgery was about five hours.

    I had my generator implanted above the waist on the left side just at the bottom of the rib cage. I didn't like the idea of pants possibly riding on the scar or the generator, and from everything I read, having the leads cross from the hips up through the waist increases the flex stress on the leads and the chances of lead failure.

    Getting technical information on the implant, how it's supposed to work, how it actually works and so on was frustrating, but with the help of the medical reps I got most of my questions answered. 

    The battery/signal generator is a non-rechargeable 5.3Ah battery and unlike other SCS implants the signal levels are microamps, not milliamps -- meaning, the battery should last longer than standard SCS implants. At my current treatment levels battery life is estimated at six to seven years. I have the shortest leads they make, 50 cm, which is about 20 inches each spanning no more than ten inches from implant to electrode sites. The remainder is coiled at each end for strain relief.

    I was told that in the few years since DRG treatment was approved they've learned a few things about how bodies tend to respond to it. The first few days, levels are set relatively low as a "wash-in" period, getting the ganglion used to the pulses. After that and a first-time tweak of signal levels I was told to leave them alone for at least a week. Even so, I did lower the levels for both leads on one side because I could feel muscle spasms on that side pulsing constantly. After that I was given permission to adjust levels as I saw fit.

    I was warned that constant, relatively high signal levels in DRG treatment can lead to "bounce-back", in which the original pain returns and can be even be worse. At that point the DRG treatment simply doesn't work anymore. The best approach, they said, was to use as low a level as possible that provides relief so the ganglion do not become desensitized to the treatment. 

    At my next appointment this coming week, I'll be given one or two alternate treatment programs I can choose instead of the constant treatment I'm using now. These will allow treatment (which the med reps consistently refer to as "dosing") to turn on for one or two minutes, then off for one or two minutes. If those programs still provide relief, this should further reduce the possibility of becoming desensitized to treatment as well as increase the life of the implanted battery.

    Per my IPS total recovery should be from six to eight weeks after surgery. That's another two to four weeks from now, after which they will lift the restrictions on bending, twisting and lifting. In the mean time I continue to work on reducing my Vicodin dosing, which should help with my clarity of thought as well as a slow-moving digestive system which creates problems of its own. With any luck I'll be off the narcotics altogether in another few weeks.

    Sorry for such a long post, but it's been a long year-plus getting here and thought it was worth sharing the details of the device and what I've been told of how it works and the possible complications worth avoiding.

    I'm happy to answer any questions, from my perspective, and will provide at least one or two updates with my upcoming appointments.


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