More Pain now than before I was Implanted

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I had my trial about 4 months ago and I have to tell you I thought I had found the Holt Grail!

Now more than 3 months in I am suffering more than ever with sever low back pain on a constant basis.

The trial was amazing as well as the first 2 weeks and then it started. I began to get headaches and they told me that I was being over stimulated so we turned it down a bit and they went away and then the back pain came back with a vengeance. When I walk ever now and then it feels as though I'm being shocked and loose all feeling in my waist to my legs and it's not the machine it's the pain and it's so intense at times I fall to my knees!

I went back and forth with Nevro techs to see if they could get me back on track but nothing worked it got so bad that I thought my hip replacement was bad but my Doc who did that said it was not the hip but that it was the left sciatica nerve being over stimulated.

So back to the drawing board and still nothing!

I just went for an MRI and was told that I have severe Arthritis in the L3, L4 joints and that it was that that is causing the pain but a few weeks before the MRI they took xrays and found the left lead had moved almost one vertebra down and I truly believe that that is why I am no longer getting relief and my Doctor keeps saying that it didn't move enough for this to be happening and that the pain is being caused by the Arthritis.

I am now going in for Facet injections this Tuesday this and the meds were the things I wanted to stop with the simulator but the doctor feels this will help and I'm sure it will.

The doctor is also saying that the HF10 will not help the Arthritis pain but I just read on the Arthritis website that they do help??

So this is where I'm confused and I really feel the lead needs to be put back where it was so that it will give me the relief that I had in the beginning not more injections!

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  • Posted

    So sorry to hear you are in so much pain. I had a Nevro HF10 implanted in June 2018 and so far have had moderate success, but I too have experienced a number of the things you have. Let me give you my thoughts on what you have mentioned:

    (1) "Migration" of the Lead(s) - This is a pretty common occurrence with the HF10 and generally speaking, the techs who are assigned to you know how to deal with it. First I should mention - there are two kinds of implantation procedures done with the HF10 - the percutaneous method and the "paddle" method. I'm assuming you had the percutaneous method because the paddle method does not suffer from lead migration (the trade-off is that it is a more serious implantation surgery to do the paddle. They have to do an actual back surgery and do a laminectomy in your thoracic region, where they implant a paddle to which the upper ends of the leads are connected. In the percutaneous implantation they just slide the leads up the sides of your spine and it is common that through gravity they slip down a little bit). But whether they slip a little or a lot, the Nevro tech can do a simple and quick fluoroscopic exam to see how much they have migrated, and he/she can adjust the programming to compensate for the slippage (unless the leads have slipped past the level where the needed stimulation has to take place - if that occurs I don't know what they can do, you would have to ask the tech). I had the paddle implantation so I don't have any experience with lead migration, although I did have a little during my trial period, and the guy just made adjustments.

    (2) Trust the Tech More than the Doctor - I realize the doctor went to med school but the Nevro tech deals with these devices and their implantations every day. He has been trained by a company (Nevro) that has done hundreds of thousands of these cases, and has run multiple scientific studies on how they work and what helps what kinds of conditions. The doctors are often much less informed about the stimulators - they've read enough about them to know they are worth recommending to patients, but they really don't have the time (or the need) to know the nuances of the thousands of programs your tech can try on you. Once the device is implanted permanently, my recommendation (and this is how I work it with my doctor) is: use the doctor for pain meds and use the Nevro tech to get the most out of the stimulator. The Nevro tech knows MUCH more about how the device works (and my doctor - who is a specialist in this field - has freely admitted as much to me).

    (2) Facet Arthritis vs. Sciatica - Here's the bottom line: the Nevro HF10 works on BOTH Facet (spinal) Arthritis and on Sciatica. If your doctor said it doesn't then he is wrong, and that just illustrates my point above, that you need to trust the tech on how the Nevro works. My doctor sold me on the Nevro specifically by telling me it was the only treatment he knew of that treated both conditions. Injections only treat one or the other, decompression surgery only treats sciatica, and I believe even a radio-frequency ablation only treats one condition, not both. The stimulator is the only device that has the potential to treat both, and you were wise to try it if you suffer greatly from both conditions.

    (3) "Overstimulation" - I wish somebody had told me before I got the Nevro about this concept of over-stimulation. I really think that term was invented by the Nevro lawyers who didn't want doctors or their techs to call it what it realize is: phantom pain. The HF10 can actually CAUSE pain, not just treat it. It can cause phantom pains in areas where you don't normally feel pain (e.g. in your ribs, in your "good" leg, in your groin, etc.), and it can also antagonize and amplify your pre-existing pain. Hence what you will learn over time with your stimulator is that it is a never-ended battle, a trade-off between turning it up high enough to effectively reduce your pain but not so high as to cause "over-stimulation" and put yourself in more pain. I've reconciled myself to this effect, although I wish they (Nevro, my doctor) had made it more clear that you don't just implant it, turn it on, find the right setting and then you are golden for the rest of your life. To use the Nevro effectively you have to be constantly aware of whether you are feeling unusual, and then turn it down if you are, see if the pain subsides (it will, in an hour or two), leave it down for a day, at most two days, and then turn it back up. And sometimes the over-stimulation won't come upon you for WEEKS after you've tried a new setting (it won't just start bothering you right away), so you may have trouble connecting the two events (stimulator power change, unusual pains). You just have to be constantly assessing your pain situation.

    *

    Bottom line - I'm happy I had the stimulator put in. I've cut my pain meds down to one-third of what I was taking before the implantation. But it has been a LOT of work and has required a TON of patience. And i've been in a good deal of pain on a number of occasions from over-stimulation, which is depressing. But I meet regularly with my tech to get new programs to try (have probably met with him at least a dozen times), and I anticipate he and I will have to keep experimenting many more times if my hope of becoming med-free (but unlikely never to be fully pain-free) will ever come to pass. And I've had to learn a lot on my own, because the doctors and the techs don't always explain things well. My advice to you is that now that the thing is in you permanently, fight hard to get it to work. It CAN work, and it can work on both arthritis and sciatica, but you have to use the tech and the doctor effectively - use the tech to experiment to find the right programs, use the doctor for pain meds and if you want, other treatments like injections or ablations (a third doctor I spoke with, a neurosurgeon who did my first back surgery over a decade ago, told me he had recently attended a conference about spinal stimulators and went to a breakout session where some researchers presented results about the surprising effectiveness of doing radio-frequency ablations on patients who had spinal stimulators in them. They said the two procedures worked surprisingly well together).

    Good luck, and if you have any questions, feel free to ask me.

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    • Posted

      Seafarer123

      Thank you for your feedback!

      As far as migration of the leads the one has move more than one vertebra and the tech just can't seem to find me any relief as of yet and we are meeting at least once every two weeks with no success!

      I really feel that the lead needs to be put back were it was in order for me to get my relief back and I think the doctor and the tech are avoiding saying that I need to have another surgery to have it moved again and the tech is doing everything he can to help me!

      I have also read that the HF10 helps with arthritis and I am going to talk with my doctor regarding that as I even printed the article for him to read and tell him he is wrong and why is it not working??

      As far as the over-stimulation I can tell you it was bad and bad to the point that I had to shut the HF10 off and leave it off for days before the pain went away and my old pain came back and was treating it with my meds.

      I actually felt as though my hip replacement let go it was that bad!

      I was in Italy and had no one there to help me except over the phone telling me to turn it off and then put it on again but on a lower setting and if it doesn't stop just shut it off until you get home.

      I had to get a cane that's how bad the pain was as I was having difficulty walking!

      I too was hoping to be med free but as of now I am taking stronger meds just to get through the day and that's what I was trying to avoid!!

      In the first two weeks I was down to 2 pills a day plus an anti inflammatory and now I'm taking 5 plus others to just be able to get around!

      Thanks again for your input and I'll keep you posted on what happens on Tuesday!

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    • Posted

      Hi Steve,

      As for the degree to which the over-stimulation pain can be bad - you are SO right! If ever the Nazis wanted to invent a device to torture people without getting their hands dirty, a spinal cord stimulator turned up high would do the trick. I've had over-stimulation pain that was so bad I couldn't breathe, and I too (until I figured out how to deal with it) turned to even stronger meds just to get through it. They key is to understand what the machine does. When it over-stimulates the nerves severely, you have to turn it way down, and in 1-4 hours the pain will subside. It has irritated your nerves and they need to recover. Then if you leave it down for about a day you will often feel good, because the over-stimulation pain fades away quickly but the regular relief you get from the stimulator stays effective for another 24-36 hours. But if you leave the device turned down low for more than 24-36 hours, your original pain (that the stimulator was treating) returns, and you are miserable again, but now for a different reason. So the key is - turn the stimulator down and leave it down for 24 hours, but start ramping it up again as soon as that "nerve recovery period" is over - because if your "organic pain" gets out in front of you, it can be days before the stimulator knocks it out again.

      Now as for the question of asking for a new surgery to re-position your leads, think about this. You said you've only had the stimulator implanted permanently for four months. And already it has migrated down enough that the tech is concerned it might not work as intended. So the question for you is - what makes you think that a surgery to re-position it is going to solve the problem for any length of time? If you are sufficiently up and active that gravity (coupled with your body movement) has allowed the lead to slip down so much in four months, isn't it just going to do it again? Your doctor (not to mention your insurance company, or NHS if you are in Britain) is not going to want to keep doing these surgeries for you every couple of months, knowing how likely the leads are to migrate quickly and far.

      The solution might be to ask them to do another surgery and this time to implant you with the paddle version. The paddle version does NOT migrate, because the upper ends of the leads are screwed into a metallic paddle that is itself lodged permanently inside a thoracic vertebra. I think the only way you will prevent migration is to switch the kind of stimulator package they gave you, not simply to just re-position a lead that is unmounted and likely to move again.

      My doctor told me that the way he makes his decision on whether to implant the stimulator using the percutaneous vs. the paddle version is two-fold: how likely is the patient to be very active once the stimulator starts helping him (more active means more likely he should implant the paddle version), and his second criterion is whether the patient is healthy enough to have the paddle surgery, which is a more involved surgery than the percutaneous version. (but note - it isn't a super-involved surgery, it is the equivalent of a simple decompression surgery. It isn't, for example, anywhere NEAR as complex as a spinal fusion).

      It sounds to me like you are active enough and healthy enough that you should have had the paddle version installed. Perhaps that should be the focus of your pressure back at the doctor to fix your issue.

      And yes, let me know how things go!

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