Spinal Cord Stimulation for Painful RLS

[Joolsg]

sciencedirect.com/science/a...

A trial of spinal cord stimulation in a VERY small number of patients showed that it reduced painful symptoms.

However, I have SEVERAL reservations.

The trial doesn't say what medications the patients were taking. It is a German trial and I know that nearly all patients in Germany, like in the UK are treated with dopamine agonists. I would like to have seen a detailed breakdown of meds and doses.

I suspect that if they had been treated with the right medication, there would not have been the need for such invasive surgical treatment. Inserting electrical devices in the spine is not without risk. Talk about using a sledgehammer to crack a nut.

The trial only involved 19 patients.

The reduction in IRLSS score from severe (35/40) to around 22 is not a good result as far as I am concerned. A score of 22 is still serious RLS with the patient being affected nearly every day/night.

There is no email address to contact the lead researcher.

However, for the 2 -5% of refractory RLS patients who are not able to be treated 'correctly by the RIGHT doctor using the RIGHT tools' - SCS might be a last ditch option.

[707twitcher]

I had a spinal cord stimulator "installed" 2 1/2 years ago for chron ic low back pain. It has been a life-changer - reducing my back pain by about 50 - 60%, which makes a huge difference. It involves putting two wire leads along the thoracic spine (even though the pain is down in lumbar area) which connect to a battery pack inserted under your skin anywhere in the back area that you decide on. You strap on a belt with battery charger every 5-7 days to recharge. The leads can be programmed (any time) to fire in differrent spots at different intensities. You don't feel any tingling or anything else indicating you have a device on. It acts on nerves that extend down your spine to your legs - that's why it doesn't have to be located in the spot of your pain.

I contacted my rep at the device company (mine is Nevro; there are a few others) asking them if they were working on any RLS applications. The answer was no. Given how effective it is for back pain (for me anyway), I think it does hold a lot of potential for RLS if device companies invest some R&D $ in it. It wasn't a major surgery - just a simple outpatient procedure. Minimal risk - just the typical anesthesia risk. But it was quite expensive; my insurance covered it all. So I imagine we're a long way from it being a common, pratical RLS solution. But in my view, it's certainly not a sledgehammer (assuming it eventually can be tweaked so that it does relieve RLS completely). I'd do it for sure if it enabled me to not take RLS meds, and assuming insurance coverage. But it would take a lot more research and widespread demand in order for the cost to come down to a practical level. I can't see any med device companies investing much in an RLS application just yet. RLS just doesn't get the attention it desrves.

[Joolsg in reply to 707twitcher]

That's very helpful, useful information Twitcher. If it is as minimally invasive as you describe.It may be helpful for those who experience severe pain as a manifestation of RLS.

But, as you say, we neec more trials for RLS in general.

[CowgirlArtist]

I also have a spinal cord stimulator. I've had it since 2018, supposedly for lower back pain. When my doctors told me has been known to stop RLS symptoms, that's all it took for me to say "Yes!" to it. The technician was later rather upset with him for mentioning that to me because it's never been approved for RLS. No, it has done nothing for my RLS and the tech doesn't want to even try different settings (I can't blame her). It works OK for neuropathy and for mild sciatic pain but I rarely use it. I've been told I should just have it removed.

[Joolsg in reply to CowgirlArtist]

That's interesting. Thanks for the information.

[Elisse3]

Would love it to work for my painful RLS to take no meds no more side effects from taking them. But sounds a long way off if at all.

[RLSLearner]

I think the main indication they did the stimulators for was chronic pain but they were following up on the subset who reported RLS to see how it worked for them. I too thought is sounded way invasive but twitcher has allayed my fears on that. So good to see it getting reported on.

[vikkitennis]

I too have an Abbott SCS implanted 2/23 for lower back pin, and “with wishes” to curb the RLS.

Unfortunately , it didn’t help with the RLS, and helped in the beginning with lower spine problems, but waned 4 months ago, to where I discovered it was off for awhile. Met with the surgeon last month, and after working with the reps reprogramming, to no avail, it will be removed next month. Possibly in time, it will be a feature or help those with RLS and PLMD.

[Joolsg in reply to vikkitennis]

It seems not to help RLS for the 2 or 3 people who have had the procedure.Thanks for sharing Vikki.

[LanaCSR]

Before my RLS was controlled with buprenorphine, I was seeing a pain specialist who tried many different meds, but when nothing seemed to work (he never tried buprenorphine and I didn't know about it at that time), he suggested the spinal cord stimulator solely for my RLS. I told him I wanted to think about it first but ended up never getting one. And, now after reading these comments about others trying it and not getting any help with their RLS from it, I am so glad I didn't go through with it!

[MrCrow]

There's also this: pubmed.ncbi.nlm.nih.gov/391....

There have been only 7 patients who've undergone this procedure though

[Joolsg in reply to MrCrow]

That needs its own post Mr Crow - especially useful for patients with refractory RLS who have failed oral opioids.Perhaps the side effects are different by using morphine in this way?

Great find.

[ziggypiggy in reply to Joolsg]

Yes. Never heard of that. Wonder if side effects like insomnia and nausea are similar with this method.