Spinal Cord & DRG Stimulator Trial

[Macadwel]

Hello,
I have been through all the medication treatments, the last was methadone, I did not like Methadone so asked to go off of it within 24 hours. I am currently on two drugs, tramadol 300 mg and gabapentin 100 mg at bedtime and 100 mg when I wake, (I don't take this often), and 75 mg three times a day. I have RLS 24/7. I have had it all my life and to make matters worse I had cancer at 15 and one of the treatment drugs was vincristine sulfate which turned out could cause nerve issues. I also took part in an aging study and was told that many of the people who received MOPP, the cancer treatment with the Vincristine sulfate, had RLS after the treatment.

That being said, now that I am at the end of my drug treatment selections, except for going on a drug vacation, maybe hypnosis (has anyone tried hypnosis) I have been asked to have a spinal cord or DRG stimulator implate. I was under the impression that RLS is either from low iron, which I have high iron or something in our brain. If it is something in our brains how is a stimulator that goes through our nervous system in our back going to help? Has anyone had one of these spinal cord stimulators put in and had them work? Or a DRG stimulator put in? Please help!

I have an appointment in March and will have to make a decision to put one in or not, but I am on the fence.

Thanks, everyone!
Melissa

[Rustsmith]

Melissa, the root cause for most of us with RLS is a deficiency of iron in a specific part of the brain. Some of us can have high iron, but also a genetic issue that limits iron transport from the blood into the brain, which is where it is needed. So it is possible to have very high ferritin levels and still have severe RLS.

As for the spinal stimulators, they are a new approach to treating RLS and little is known about how well they will work for everyone. For some, there are spinal issues that limit nerve conduction (which goes both ways) and the thought is that improving nerve conduction through the "damaged" areas may help. There is also work that is looking at the role of the nerves in the spinal cord that produce a different type of dopamine that the dopamine agonist treatments address. So it is possible (a total guess on my part here) that the stimulators may also improve the production of this other type of dopamine in the spinal cord so that it eventually diffuses up to the part of the brain where RLS is caused (which is right at the top of the spine).

One other type of treatment that has only been performed on a VERY small number of patients worldwide (maybe six now) is the implantation of a DBS system (deep brain stimulation). This is a common treatment for late stage Parkinsons and is something like a cardiac pacemaker with electrodes implanted into the portion of the brain where Parkinsons and RLS both occur. But since has seen such limited (but successful) implementation, it is still considered a research application and the cost would be several hundred thousand dollars.

[XenMan]

I have an appointment in March and will have to make a decision to put one in or not, but I am on the fence.

I would strongly encourage you to take up this offer. I regularly target my main nerves between the brain and my RLS symptoms to stop them, and it works very well.

RLS is sensorimotor condition, which is why if you move your legs the symptoms stop. This is because the brain gets a signal from the legs that disrupts the signal that is causing the brain to react and create symptoms, or sends one if the RLS is without trigger points and purely neurological. By pressing or compressing the nerves as I do, the brain gets a different signal and the symptoms stop. Sometimes this is for a short time, in other cases it is all night.

The problem is accessing the nerves and the clumsy method of compressing them, which is why it is just one of the methods that I use. A DRG stimulator is going to mess up the signal from the brain to the area the symptoms are and should work very nicely if the actual condition is RLS and not akathisia or one of the many other sensorimotor conditions that many think are RLS.

Iron and RLS is at best inconsistent, based on the numerous papers that have failed to replicate identifying low brain iron in those with RLS. As a treatment, it works well for many people, similar to all the other non-iron treatments.

[Macadwel]

Thank you for your response it makes very much sense as I have been using various methods of movement when my legs act up, or putting a tens machine on my legs at night to help me sleep. I believe I will try the trial.

[Macadwel]

Melissa, the root cause for most of us with RLS is a deficiency of iron in a specific part of the brain. Some of us can have high iron, but also a genetic issue that limits iron transport from the blood into the brain, which is where it is needed. So it is possible to have very high ferritin levels and still have severe RLS.

As for the spinal stimulators, they are a new approach to treating RLS and little is known about how well they will work for everyone. For some, there are spinal issues that limit nerve conduction (which goes both ways) and the thought is that improving nerve conduction through the "damaged" areas may help. There is also work that is looking at the role of the nerves in the spinal cord that produce a different type of dopamine that the dopamine agonist treatments address. So it is possible (a total guess on my part here) that the stimulators may also improve the production of this other type of dopamine in the spinal cord so that it eventually diffuses up to the part of the brain where RLS is caused (which is right at the top of the spine).

One other type of treatment that has only been performed on a VERY small number of patients worldwide (maybe six now) is the implantation of a DBS system (deep brain stimulation). This is a common treatment for late stage Parkinsons and is something like a cardiac pacemaker with electrodes implanted into the portion of the brain where Parkinsons and RLS both occur. But since has seen such limited (but successful) implementation, it is still considered a research application and the cost would be several hundred thousand dollars.

Hi Steve,
I did not know that you could have high iron and still have iron issues with RLS, thank you for letting me know about that. Also, the role of cord and dopamine, that would explain why dopamine drugs work so well until they don't. I look forward to hearing more about the other treatment that is on the horizon for Parkinsons as it seems that RLS's treatments seem to be very similar to Parkinsons. Thank you for your insight into the RLS treatments. Melissa

[debbluebird]

I have had a spinal stimulator for 2 years. I think it helps. After it's put in, you will have movement restrictions for 2 months, until the areas heal.
Good luck

[XenMan]

Thank you for your response it makes very much sense as I have been using various methods of movement when my legs act up, or putting a tens machine on my legs at night to help me sleep. I believe I will try the trial.

There is also a great paper on transcutaneous spinal direct-current stimulation (tsDCS) with positive results.

https://www.frontiersin.org/articles/10 ... 00873/full

Drugs and iron have clearly failed as a general solution, but electrical stimulation still has a good future.

As your treatment of symptoms are similar to what I use, I would also encourage that you explore oxalate as cause for your RLS as that is the source of mine.

An easy way to test is to get some beetroot juice which is insanely high in oxalate. It is usually in a juice blend and take increasing amounts before bed. If oxalate is an issue, the more you take, the worse your RLS will get. My legs have a light burning feel the next day, with delayed onset of symptoms through the night after a small amount.

If oxalate is an issue, then you can reduce consumption and explore other oxalate management options.

[sleepdancer2]

I've read where some people put the electrodes on their legs, I guess on trigger points. I didn't have any luck with that. Just seemed to set off my nerves worse. Maybe if I'd had professional instruction it would have helped. At any rate, I found when I put the electrodes on my lower back (buttocks) it interrupted the signals between the brain and the legs enough to get pretty consistent relief when I used it diligently every night over time before bed.

[Macadwel]

Thank you for your response it makes very much sense as I have been using various methods of movement when my legs act up, or putting a tens machine on my legs at night to help me sleep. I believe I will try the trial.

There is also a great paper on transcutaneous spinal direct-current stimulation (tsDCS) with positive results.

https://www.frontiersin.org/articles/10 ... 00873/full

Drugs and iron have clearly failed as a general solution, but electrical stimulation still has a good future.

As your treatment of symptoms are similar to what I use, I would also encourage that you explore oxalate as cause for your RLS as that is the source of mine.

An easy way to test is to get some beetroot juice which is insanely high in oxalate. It is usually in a juice blend and take increasing amounts before bed. If oxalate is an issue, the more you take, the worse your RLS will get. My legs have a light burning feel the next day, with delayed onset of symptoms through the night after a small amount.

If oxalate is an issue, then you can reduce consumption and explore other oxalate management options.

Thank you for the article it was very helpful! I am definitely going to see if the spinal cord & DRG I am being offered is the tsDCS that is in the article as that seems amazing!
As for the beetroot juice, my legs are already at a heightened restlessness, so I think if I delete a few items from the list it might be more helpful, and lower my RLS. I eat a lot of potatoes so I will try to delete a few things and see if that helps.
I am also in contact with my hematologies to look at my blood levels to see if my Iron is in line with the recommendations for RLS people, can't hurt to look at all factors. You all have been so helpful! Thank you!

[Macadwel]

I have had a spinal stimulator for 2 years. I think it helps. After it's put in, you will have movement restrictions for 2 months, until the areas heal.
Good luck

Debbie,
Thank you for your response, it is nice to know that this is helpful and to hear from someone who has it.
Are you still on any mediations or were you able to get off all medications?
Thanks,
Melissa

[Macadwel]

I've read where some people put the electrodes on their legs, I guess on trigger points. I didn't have any luck with that. Just seemed to set off my nerves worse. Maybe if I'd had professional instruction it would have helped. At any rate, I found when I put the electrodes on my lower back (buttocks) it interrupted the signals between the brain and the legs enough to get pretty consistent relief when I used it diligently every night over time before bed.

I move my electrodes around every time when I use my tens machine until I find a spot that works. It also took me time to find the right type of pulse, I use a tapping pulse from my machine and it really took me about 6 months to determine which mode worked the best. I also keep them pulse low, if your pulse is moving your muscle or it is painful it is too high. It should only be enough to take your mind off of the RLS.
Best,
Melissa

[XenMan]

At any rate, I found when I put the electrodes on my lower back (buttocks) it interrupted the signals between the brain and the legs enough to get pretty consistent relief when I used it diligently every night over time before bed.

Interesting, I haven't tried that. All the nerves for your legs go through the buttocks, and if you use muscle stimulation you may be compressing them to disrupt the signal, similar to some of the techniques I use, but with more eloquence and effectiveness.

[debbluebird]

I have had a spinal stimulator for 2 years. I think it helps. After it's put in, you will have movement restrictions for 2 months, until the areas heal.
Good luck

Debbie,
Thank you for your response, it is nice to know that this is helpful and to hear from someone who has it.
Are you still on any mediations or were you able to get off all medications?
Thanks,
Melissa

No, I am still on medications. At first I weaned off of my methadone. I still took gabapentin. I had the Stimulator placed in Jan 2020. In June 2022, I had to add back an opioid, buprenorphine. I take a very small dose. .5 mg
My back is getting worse. I'm in the process of adjusting the Stimulator now.
Good luck

[Oozz]

I have had a spinal stimulator for 2 years. I think it helps. After it's put in, you will have movement restrictions for 2 months, until the areas heal.
Good luck

Debbie,
Thank you for your response, it is nice to know that this is helpful and to hear from someone who has it.
Are you still on any mediations or were you able to get off all medications?
Thanks,
Melissa

No, I am still on medications. At first I weaned off of my methadone. I still took gabapentin. I had the Stimulator placed in Jan 2020. In June 2022, I had to add back an opioid, buprenorphine. I take a very small dose. .5 mg
My back is getting worse. I'm in the process of adjusting the Stimulator now.
Good luck

Is your spinal stimulator specifically modulated for your RLS? Or, is it primarily for back pain with hope that it helps with the RLS?

[debbluebird]

I have it set for my RLS. I noticed that there is a line. If I have it set too high, then my RLS starts up. With the help of my Rep, we fined tuned the amount of stimulation. In addition, I take meds too. That being said, if I didn't have RLS, then I would focus more on my back pain.