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Spinal stimulation?

Posted: Tue Jun 16, 2020 3:33 am
by Brenda B
I browsed through the posts here but did not find any regarding using a spinal cord stimulator. I haven't visited this forum in about 5 years as I've somewhat kept my (severe) RLS under control with the Neupro Patch and methadone but this past few months have been very hard. I'm a 64 year old female, very active. I've had RLS since I turned 40 and had a severely herniated disk. It's been a battle ever since. I've been on every drug known to mankind for RLS and lots that aren't. I've seen 17 health care professionals in 24 years. Last fall I visited an orthopedic specialist for back problems. I told him I did NOT want surgery because I was afraid of what it would do to my RLS. He insisted that a spinal cord stimulator would not exacerbate my RLS but could very well help it. I was so desperate, I went for it. I've had this stimulator for 8 months but unfortunately since the FDA has not approved it for RLS, my tech will not even try to help with the RLS. I understand that she can't. I was wondering if anyone else has had any experience with stimulators.

I'm to the point where I have no where to turn. RLS rules my entire life. All of the doctors in my local medical clinic refuse to see me. Their reason? Because I'm on methadone (which I was prescribed by a Mayo Clinic Neurologist 5 years ago). The only other Dr. in my area who will see me has NO interest in RLS, will not read any of the literature I obtain from the RLS Foundation, she's just a 'fill-in for the Mayo Dr as far as the methadone prescription. I think she's just hoping when I turn 65, I'll just go away and find another Dr. (kind of hard to do in a rural area). I feel that the medical community has failed me miserably. My local Dr's have turned their backs on me, the Mayo Clinic insists you must make the trip back every 18 months or you are no longer considered a patient and cannot talk to anyone there. I've even had neurologists turn me down saying they don't know anything about severe RLS. I'd hoped and prayed the stimulator would be my miracle cure.... maybe someday. I'm sorry this is so long, I was wondering if anyone else here had any experience with stimulators. I know there have been clinical trials but they seemed to go nowhere with them even though I'd read there had been some good results.

Thanks for any advice!

Re: Spinal stimulation?

Posted: Tue Jun 16, 2020 8:32 am
by badnights
Brenda B you deserve a better reply than this. You are in a terrible spot, and I'm so tired I can't think. My frustration with the medical community and with people in general is getting all clogged up with other emotions, like I want to cry for you. Did the stimulator actually make your WED/RLS worse?? Or has it been neutral and it's frustrating because it has the potential to perhaps help if only someone was willing to change the settings? Does it help at all for the back pain?

Re: Spinal stimulation?

Posted: Tue Jun 16, 2020 2:03 pm
by Brenda B
It's pretty much neutral. It stops certain kinds of back pain, mostly nerve, such as sciatica or neuropathy, but most of mine is probably arthritis and worn out discs. You're so right, I KNOW this has the potential to help me but no one will/can try so I'm frustrated.
It's so hard to find anyone who understands what I go through so you made me feel better, like I'm not so alone, Thank you! I'm always scouring the Night Walkers magazine and the internet for info on spinal stimulation but haven't found much. There is a Dr who is a neurologist/chiropracter named George Kukurin who supposedly treats RLS with a type of external Spinal Stimulation but on one site he's located in Pennsylvania and another he's in Arizona so I'm a little leary of contacting him. Also, I'm a long way away from either place.
Thanks so much for your reply.

Re: Spinal stimulation?

Posted: Tue Jun 16, 2020 5:08 pm
by Rustsmith
BrendaB, I have been in a very similar place with respect to doctors that have refused to accept me as a patient simply because I am on an opioid for my RLS. A few years ago, I had an interstate move from a major city where I was a patient at a Foundation Quality Care Clinic to a smaller town. I naively expected to be able to find a doctor to treat my RLS, which was in severe augmentation at the time of the move. When I arrived in my new home, I found that no doctor associated with the only hospital in town would treat my RLS because I needed to switch to an opioid. All that they could do was refer me to the doctors at the medical school in the state capital 100 miles away. Earlier this year, I finally ended up moving to a larger town so that I could get access to medical care for any issues other than my RLS. I now have doctors who are willing to treat my other health issues and to follow the instructions of my doctor at the medical school when it comes to writing my methadone prescriptions. I still have to make the trip to the state capital twice a year to see my RLS doctor, but at least I can get my meds and not have to worry about receiving treatment for any new health issues that will certainly arise as I get even older.

Re: Spinal stimulation?

Posted: Tue Jun 16, 2020 11:26 pm
by Brenda B
I wish sometimes that moving was an option but it's not. My husband and I ranch for a living, therefore we own land, have a daughter and son-in-law who work with us and honestly, I love where I live. I to have to drive 200 miles to see any neurologist but even then, it's hard to find one that knows enough about RLS and is willing to use opioids. The nearest Mayo Clinic is 7 hours away so that's a really hard trip with severe RLS. Lately, I've learned to really dislike and distrust doctors. Seems they've done me more harm than good. I wish 24 years ago I knew what I do now. I would NOT have seeked medical help and sadly, I'm 100% sure I would not have the RLS I have today.

Re: Spinal stimulation?

Posted: Wed Jun 17, 2020 7:49 am
by badnights
I wish 24 years ago I knew what I do now. I would NOT have seeked medical help and sadly, I'm 100% sure I would not have the RLS I have today.
Me too! I was put on a dopamine agonist when my ferritin was really low, I augmented (worsened the RLS/WED), (had to teach my doctor what augmentation was after I found out myself), and have been left with the disease permanently worsened. I thought it was bad then, bad enough to take medications. How well-off I was without knowing it! Now I take lots of medications and still have a crappy life.

But there is only the present and the lessons we've learned from the past. One thing seems clear: if moving is not an option for you, then you must make the 7-hour drive as often as you need to in order to remain a patient of the only available place that actually understands WED/RLS. I don't think you should give up on ALSO trying to find a local doctor who "gets" it. It will probably end up being someone you train. Keep looking for neurologists who specialize in movement disorders who are willing to learn more, but even a general practitioner who cares and wants to learn could be a real ally in this, and not just someone who writes the script on the advice of Mayo.

It's just that how to find someone like that is not always clear. Some members here have searched for a knowledgeable doctor by calling clinics and asking to talk to the nurses, asking the nurses how many RLS/WED patients the doctors had treated, how often they treated augmentation, & how much experience they had in treating severe refractory RLS/WED. The key there is the augmentation question, and the word refractory; if a doctor doesn't know what augmentation is, s/he doesn't know how to treat refractory WED/RLS. The "severe" question without refractory is not very useful because severe covers an incredibly wide range - according to some descriptions, all you need is to experience symptoms almost every day and you're severe: no consideration of how intense the symptoms are, how many hours of the day they're that intense, etc.

But that method of questioning the nurses about the doctors' experience in treating WED/RLS is not very useful if you're seeking a doctor who doesn't know and is willing to learn. The only way I can think of to do that, is to actually book an appointment with every potential such doctor and treat it like an interview, in which you're interviewing him/her for the job of being your GP. You're looking for a willingness to learn new things, and to be pointed to new things by the patient; and an open mind about opioid medication, not a knee-jerk "no".

There is not going to be an easy route to finding a good doctor. There should be! But there is not going to be. So focus your precious energy on finding someone without wearing yourself out doing it, and make that trip to Mayo whenever you have to, so you don't lose your "patienthood" :) BIG HUGS, And keep looking for info on spinal stimulation for WED/RLS. I wonder if you called some of the researchers who are working on RLS/WED at universities and teaching hospitals - maybe one of them would get interested in seeing you as a case study?

Re: Spinal stimulation?

Posted: Thu Jun 18, 2020 4:52 pm
by Brenda B
Thank you Beth for the nice long reply. I know you're right. I've never been satisfied with the care I received at Mayo. I've been there twice in the past 23 years (which isn't a lot, I know). The Dr. there seems to understand RLS but he's not a good listener, has a rather arrogant attitude and disagrees with a lot of what I tell him. Even at Mayo it's hard to find a Dr who really understands. As far as finding a Dr locally, we have a weird healthcare system. The Dr's and clinics are all owned by 2 major insurance companies (Avera and Sanford). There are very few independent clinics or hospitals anymore. The insurance companies, depending on who you are with, restrict where you go for care. Unless you want to pay exorbitant out of network fees, you're stuck with either an Avera or Sanford Dr. Luckily, this fall I'm on Medicare so that helps.
Unfortunately I have another serious problem. I'm on a daily Neupro patch that is horribly expensive. Right now it's covered by my insurance with a mere $10 co-pay but once I lose this insurance the Medicare Part D plans don't cover it unless I want to pay $10,000/year for it. I've read on their site that the company that makes it does not offer coupons for anyone getting help from the government (which I assume they include Medicare?) Have to check.
Again.... thanks so much. Just knowing that someone else out there knows what I go through, helps.
BTW, I did reach out to a university in a state east of us that was doing a study on Spinal Stimulation and RLS but got no response. I've also tried talking to my Tech from Boston Scientific but she just isn't able to help me, her hands are tied (no FDA approval)
Thanks again Beth for your advice.

Re: Spinal stimulation?

Posted: Thu Jun 18, 2020 7:53 pm
by QyX
So I don't know anything about spinal cord stimulation but in treatment resistant RLS cases, one option that might make sense to explore would be intrathecal morphine (1-2 mg / 24h). I've read a couple of case reports a few years back. It is certainly an option when you can't achieve enough relief with more conventional methods of administering opioids.

Given that you have seen so many different doctors and tried so many drugs, I suspect you already have tried i.V. iron without much success?

Could you write maybe a bit more about your current symptoms and primary problems with RLS? I would be very interested to learn more given your history with the illness.

Personally I tried 60+ drugs. Currently I take a combination of 3 different opioids (Oxycodone, Morphine and sometimes Hydromorphone), Oxcarbazepine (an antiepileptic, take it mostly for pain), cannabis from the pharmacy which I vape in the evening, iron tablets and melatonin. The melatonin I can't take every day. I sometimes have episodes where I am absolutely normal for a few weeks but then often go back to only sleeping every 2nd day until I reset cannabis & melatonin tolerance. Currently I am looking for ways to manage tolerance better so that I don't have to do this anymore.

I kind of think that RLS is a really mean disorder. Chronic insomnia eats you up from the inside and makes it impossible of having even a remotely normal life. At least that's how it has been for me for several years now.

Re: Spinal stimulation?

Posted: Fri Jun 19, 2020 2:06 pm
by Brenda B
Wow, you have been on so many meds! Most of the ones that you're on now, I'd never get here. It's a rural, sparely populated part of the US and the doctors here are very conservative with the medications they use. Since the government crack down on opioid use, most are afraid to prescribe them. Cannibis is not legal in my state. My iron levels were checked at the Mayo Clinic and were fine.
My RLS is strange in that even though it started out with the usual evening symptoms, after I was overdosed on Sinemet it also moved to very early in the morning to eventually now, I have it all day long but not so bad at night. Evenings yes, but after I fall asleep I don't usually have it unless I'm going through what I call my 'bad spells" which usually last a week or so. There are some days when I am not able to sit (or even stand still) the entire day. For me, it's electrical shocks that go through my legs. I have it in my arms, shoulders and back but that's more of a very uncomfortable tingling (putting it mildly). Sometimes it can hit me so suddenly in one leg that I go down. I can't count the times it's knocked me to the ground. I live on a ranch and do not work at a job in town but I could never hold down a job anyway. Working outside, helping my husband is the best place for me but there are still times you need to sit and rest! RLS will not let me. It IS a really mean disorder, it can be vicious and I hate it. I pray daily that someone finds a cure, or at least a better medication. I still believe spinal stimulation is the answer.
Thank you for your post. I don't know if I've answered your questions. I feel badly for you! RLS can make life so hard and most people don't get it. I guess they should have come up with a better name. I've had people laugh when I told them what I had.
Best of luck to you!

Re: Spinal stimulation?

Posted: Fri Jun 19, 2020 3:56 pm
by QyX
Okay, so regarding iron: the iron deficiency RLS patients have is in the brain / central nervous system. Standard blood tests can't reveal the iron deficiency in the brain nor is there any other method to test for brain iron in a living person. I've had normal iron blood levels all my life and still started to benefit massively from taking oral iron tablets. Sadly having normal iron blood levels doesn't mean there is enough of it in our brain so these tests are not really relevant for us and don't mean much if treatment with iron tablets / i.V. iron infusion will be beneficial or not.

So I would highly recommend researching the topic of i.V. iron infusion treatments a bit more. Considering how bad your symptoms are, it is absolutely worth a shot. There are some u other people here in the forum who know more about i.V. iron than I do and I hope they will leave a post here and give you more information.

The electric shocks you are describing, it really sounds like things are permanently out of control for you. One thing I also wonder in this context: are you certain that you haven't augmented on the Neupro patch? While augmentation tends to develop slower and is less severe with the Neupro patch, it still seems like something that could have happened to you.

Maybe you could contact Dr. B (Dr Buchfuhrer, an U.S. RLS expert who helped quite a few people from this forum here) and ask for his expert opinion about the shocks and possible augmentation. While I sometimes experienced quite severe RLS symptoms with horrible pain that made me cry and scream, I never had those strong electric shocks you are describing. It certainly sounds quite brutal and alarming.

Re: Spinal stimulation?

Posted: Sat Jun 20, 2020 7:11 am
by badnights
BrendaB I wonder if you could tell us all the meds you;'ve been on and for how long, if you remember? How long were you on Sinemet? You clearly augmented on it. Did you have a wash-out period before you were put on another dopamine-type medication? Have you ever been off them completely for a time? You could still be augmented from the very first time - - exacerbated over and over by each dopaminergic medication you took (this time by the rotigotine).

You should get your iron checked every 6 months to year. When you get iron bloodwork done, you should be getting ferritin, iron, TIBC, saturation (transferrin saturation or saturation index or iron saturation). You may have to advise your doctor to get the ferritin checked (unless it's the Mayo doctor, who should know. The test should be done after a 12-hour fast, in the morning, and preferably after not taking oral iron supplements for many weeks but at least not for 1-3 days.

And write the numbers down when the results are in. Keep your own record of them. Note that many labs report "normal" ferritin when it's over 20 (never mind the units), but for WED/RLS patients, it should be 100 or more. That's becuase a correlation has been noticed between lower ferritin and more severe WED/RLS. Also between lower ferritin and liklihood to augment on dopamine-type meds.

But as QyX said, the problem with RLS/WED patients is a deficiency of iron in the brain. There are lots of complex molecular pathways in our bodies that move iron in and out of different organs, the blood, the gut. One of the most complex pathways is from the blood to the brain. Something in the blood-to-brain iron transport path might be defective in RLS/WED patients. Iron infusions (iron sugars delivered intravenously) help a large proportion of RLS/WED patients but not all of them. If you have your most recent iron numbers, include them with any message to Dr B, and be sure to ask him if you might be a candidate for infusion.
I guess they should have come up with a better name. I've had people laugh when I told them what I had.
They did come up with a better name! The International RLS Study Group requested that the RLS Foundation investigate the issue of re-naming RLS. The Foundation formed a committee, agreed a new name was needed for reasons that included the one where people laugh at you, and eventually came up with the name Willis-Ekbom disease. Willis was a doctor in the 1600s who left the first known written description of WED/RLS. Ekbom was a Swedish neurologist who coined the term restless legs syndrome in teh 1940s. Ekbom recognized that it was a neurological disorder (not psychiatric, not circulatory, not muscular) and that low iron made it worse and opioids made it better.

The new name has been used in the medical literature, and continues to be used sporadically, but after only two years of promoting the name change, the RLS Foundation dropped its support for the name change and went back to using the old name. So wherever the RLS Foundation refers to the disease, they call it RLS. Scientists, physicians, and patients, however, can and sometimes do refer to it as Willis-Ekbom disease, or WED, or WED/RLS or RLS/WED.

Re: Spinal stimulation?

Posted: Sat Jun 20, 2020 2:14 pm
by Brenda B
I know. I've read about Dr. Ekbom. He was a smart man to have figured it out back then. Guess I'm not fond of that name either! Just doesn't sound 'mean' enough...
How come all these modern day Dr's are so far behind Dr Ekbom? ; )
Thanks for your post.
PS: The last few days have been so much better, but I know it'll be back unfortunately. Sometimes I think stressing my back makes it worse. I'd been vacuuming a lot of water out of my basement for over 6 weeks.

Re: Spinal stimulation?

Posted: Thu Dec 17, 2020 12:00 am
by VeganGal
Dear Brenda B, I had a spinal cord stimulator (SCS) placed 1/29/20 for severe pain from spine & nerve issues after having chronic pain for over a year. I was not looking for RLS relief from it. My severe RLS had been in good control for 2 yr prior to SCS. Was having symptoms only 2-3x/month on Gabapentin & Oxycodone. At 5 wk post-op I weaned off the Tramadol & started having severe RLS symptoms 2-3 x/night! The poor sleep made both the pain & RLS much worse. The SCS company Rep had no idea why my RLS was worse, but she did change my program in a way to make the RLS less frequent and my neurologist also helped with addition of Gralise, long-acting Gabapentin and asking me to turn the SCS down at dinner & up at breakfast. I switch it between the 2 programs each day. In the nighttime program, I receive an electrical burst every 6 minutes. In the daytime, I receive a burst every 1.5 minutes. So for me, the SCS made my RLS much worse and only by adding a new med & by turning the SCS down at night have I been able to reduce my RLS. Unfortunately, my RLS episodes are still more frequent, 4-5x/wk, than before getting the SCS.

Re: Spinal stimulation?

Posted: Thu Dec 17, 2020 1:10 am
by Brenda B
Thank you for your reply. I can't say that SCS has made my RLS worse but it certainly hasn't helped. I still think it has the capacity to help but they just need to figure out the right program and I don't know if they're even trying. Most people don't think RLS is a big deal. If they've even heard of it at all. So sorry your RLS has gotten worse!

Re: Spinal stimulation?

Posted: Fri Dec 18, 2020 5:05 am
by badnights
BrendaB wrote:. Sometimes I think stressing my back makes it worse.
I wouldn't be surprised. It seems that way for lots of us. Not just our backs - when my feet were hurting from working on bad ground last summer, my WED/RLS was also worse.
Most people don't think RLS is a big deal. If they've even heard of it at all.
Indeed. Grrrrr.

Re spinal stim: do they always implant it in the same place? Or might the two of you have it in different places?