Deep Brain Surgery for R.L.S.

[Patsy11011]

Do any of the administrators or members know if Doctors are considering D.B.S yet for R.L.S? I bullied my Doctor into giving me a referral 12 mths ago but at the time it was thought that there was not enough information regarding the part of the brain to be worked on and a bit risky if it would work or not. I am coming to the end of my tether and I feel this is the only thing left for me. I was told not to give up because new ideas are being put forward all the time

[nightdancer]

As far as I know, and fro what my sleep doctor has told me ( in the US) that kind of brain stimulation surgery is only being used on Parkinson's patients, and that is still experimental. so, unless they perfect it, you may have hard time getting that done any time soon, to be perectly honest. It has been discussed in RLS circles, but discussion is about it right now on my side of the pond. What have you tried for your RLS? I know what it feels like to be at the end of your tether. Lots of us do.

[Patsy11011]

I have had RLS for 40 years so I guess you could say I've tried it all, I can't take Pergolide or Cabaser because of compulsive behavior side, I am 25mg fentanyl patches and sifrol. I can't up the dose of sifrol because of the side effects. I almost convinced them to do DBS but it's still too early to risk it, maybe in a year or so.

[Hidden in reply to Patsy11011]

The spinal pump I have gives me 0,96 intrathekal morphine and it is provided from Medtronics. We are a few patients here in Sweden, and in Norway, with very severe RLS/WED who has got the pump from our goverment health care. I had to struggle a lot to get it because there are only 3-4 doctors who know about the benefits with this method on RLS/WED.

[nightdancer]

well, keep us posted. I have had RLS since I was 14. I would hope you are not taking Peroglide since it is off the market in the US. I thought it was pulled from ALL markets, because of heart defect issues that ahs been proven over and over. Be aware that sifrol (Pramipexole or Mirapex in th uS) has the same compulsive behavior effects as Peroglide did, as well as Ropinerole. All the dopanmine agonists have that "possibility". Mirapex/Sifrol can actually be the worst one as far as compulsive shopping and gambling, etc. just for a little warning for you on that med. I know several people aho have gambled their life savings away, lost their houses, etc. This is a fact that can be googled al over. rlshelp.org has very good pertinent info on that drug and all others that used for RLS. You did not menton if you have ever taken any meds in the anticonvulasnat class like gabapentin? Of course not everything works for everyone the same way, or if at all. I cannot take any of the approved rLS meds, and the only way mine is under any kind of control is from the pain meds I take for my back and neck (5 surgeries). AND, I have tried every med on the list. There is also a Neupro patch you could talk to your doctor about. I know that is available in the UK, and several people here use it. Cabaser is a very old fashioned Parkinson's med, but it does help SOME people. You willhave to do some hard talking tgo get that surgery done in the UK, since they do not do it over here at all, and it is in "baby stages" for treating Parkinson's. My father had Parkinson's and I took care of him the last 9 yrs of his life, so I am really familiar with that. Like I said I have had RLs since I was 14, after I broke my back. When i vgot my first computer in 1997, the first "google" I did was "restless legs", and that is why and hw I found suppport groups and the rlshelp web site. An RLS expert that REALLY is the ultimate expert in RLS maintains that web site and will answer any questions. You could email him from that web site and ask him what he knows about that surgery. He answers EVERY email, and is one of my "medical advisors" for my support groups that I own and maintain. As soon as I found I out that was a thing called RLS, I never looked back until I got my diagnosis, not an easy thing to get ack in the 90's. When I found out what it was I had, I was happy it had a name, at least. at the time, my doctor was trying to help prevent mymigraines with differnet meds. I found out why some antidepressants should NOT be used with RLS 99% of the time, like SSRI's (paxil, prozac) and the worst one is Amitriptyline which is a tricyclic. they will literally make you climb the walls for most everyone. the list fo Drugs and Foods to avoid" on the treatment page of that web site I listed is very important. many, many drugs can trigger RLS or exacerbate it. do yo just take meds for RLS, or do you take other meds, too? You may be surprised what can kick up your RLS (pun intended)

with all meds and RLSer's it is trial and error with meds, but I imagine the fentanyl patches help you a lot?? I take hydrocodone and morphine and have for the last 12 yrs. Opiates are now 2nd or 3rd on the list for meds to treat RLS (off label) and I know hydrocodine is not available in the UK, if I remember right? I am in the US, so still waking my brain up.

[Hidden]

I rather tolerating the pain but never going to think about DBS, because :

1- It is not accurately assured what part of the brain need to be terminated or fixed.

2- Even if you know what part of the brain needs to be cut, reaching there will probably cause serious damages to other parts of the brain.

3- This seems to me a life threatening kind of surgery.

If I choose to do DBS, I would donate my healthy organs, Just in case

[thedragon]

It's so weird you brought this up...I was talking with Tallulah about it the other day. I don't think I'd try it at the moment but can imagine as my rls has got worse over the years and will probably get even worse .....then I just might consider it!

[thedragon]

You would probably have to be awake too!!!! Aghhhhh

[Patsy11011]

Thank you everyone for giving me your thoughts. A bit of background of my life with RLS I am 63yrs old and have had RLS for 40 yrs, I was also relieved when a Doctor finally put a name to my problem when I was about 35! I was first put on Madapar which had terrible Rebound (Augmentation). I changed Doctors, the clinic I go to specialises in sleep disorders and my Dr travels the world attending conferences on sleep disorders. I have been on several medications including anti convulscant like gabapentin. When I was put on Pergolide I was so relieved to find something that worked, but unfortunately I was not told of the side effects as they were not known at the time, I went from pergolide to cabaser because that is a slow release tablet and had the best few years with very little RLS. Unfortunately I started gambling heavily and lost everything I had, including my share of my "separation payment" (my husband and I separated for quite a few months) I am currently part of a class action case which is happening here in Australia against the 2 companies that make these meds. and am one of the longest patience to have been on them (about 10 yrs). I currently use the fentinyl patches, I have used the neupro but it did not work very well for me. I am aware that the sifrol is still a dopamine agonist but somehow it has a different effect on me than the cabaser which kept me from having "deep sleep" (always aware of what was happening around me) and always on the . Sifrol makes me extremely groggy and I am beginning to think that it is causing Rebound, I am due to see my dr in the next few weeks, I don't know what the next move will be. Because of my age and as I get older I have a bit of arthritis in my hands and feet, If I have pain in my hands or feet it sets of my RLS so I worry that as I get older I will have no control over the condition and mentally I am frightened of what the future holds for me. My body adjusts to medications very quickly and I am classed as a "probem patient" because of this. I am very frightened for my future and this is why I am willing to risk DBS, The neurologist has said that he thinks he knows which part of the brain to operate on but because of the risks and the fact that when I saw him I had just started sifrol and everything seemed to be under control, he would like to wait until there is more information available. I hope I haven't waffled on too much but I thought you would be interested in how things are here in Australia. We have many Doctors interested in Sleep Disorders and my Doctor is one of the most experienced here. Please give me some feed back. and thank you very much

[thedragon]

Brilliant post pasty..so honest..I can understand how you feel. I worry that as I get older my quality of life is going to get worse....it really makes me think...

Australia seem so much further ahead in sleep studies and such stuff. It would be a big step to take but I can understand the desperation. Hopefully research in Australia will move quickly. Stay strong!!

[Patsy11011]

Thank you everyone for your support I will definitely keep you informed of any updates

[thedragon]

Well I have just walked up a BIG mountain......and I actually had a pasty when I got back.!!!!!

SORRY PATSY!!!!!!

[thedragon]

OOOOOO!!!!!! Actually....it was ENORMOUS!!! 3000 FT enough for you cheeky.!!!!! Ha ha I am getting old you know!!!

[Hidden]

I have asked a neuro surgery here in Sweden about DBS and got the answer that the area in the brain that is affected in RLS/WED is so small and quite difficult to indentify and that's why it is not on the agenda for many years. I got my release and life saving by a spinal morphine pump with only 0,96 mg morphine and it takes away all the pain, jerkings and that terrible sensation of uncomfort/muscle panic. I know that I am very lucky living in Sweden because I didn't have to pay the real cost for the pump, only the usual health care fee. After 34 years with this monster disease and rhe last 13 a living hell I am now totally free!

[Patsy11011 in reply to Hidden]

I will have to look in to this "spinal pump" I've never heard of it. It is 8.45am and I am so groggy I feel like a junkie. I am now on slow release sifrol to try and stop the sleepiness but it does not respond quickly enough. The patch only works on the first night. Strangely enough, since I have been on my current meds I mainly only get my RLS between 4.00 and 10.00pm while I am sitting in front of the tv, not in bed (only occasionally).My Dr said it is probably rebound. I'm so spaced out at the moment I am not happy with my current meds, am thinking of booking in to a rehab facility and coming off all my meds, and starting again to see what is what.

[Hidden in reply to Patsy11011]

The spinal drug pump I have gives me 0,96 intrathekal morphine and it is provided from Medtronics. We are a few patients here in Sweden, and in Norway, with very severe RLS/WED who has got the pump from our goverment health care. I had to struggle a lot to get it because there are only 3-4 doctors who know about the benefits with this method on RLS/WED. Besides that it is helping us we never have to higher the dose and because of the very low dose we do not get any side effects. If you ask me this is my life safer, I had such a bad RLS/WED 24/7 that I had reach the limit for what I could cope with.

[Hidden in reply to Hidden]

I was on Sifrol for 11 years and ended up with some terrible side effects. I was on oral morphine for 2 years but had to higher the dose so frequently that I reached the limit of 200 mg quite soon, then we tried Methadon that nearly killed me with all the side effects I just could not stand it, at last I won the fight for getting a spinal morphine pump and now I am free!

[Patsy11011 in reply to Hidden]

thank you for your story Swedish I am glad things are working out for you now

[Hopeless100]

EEK!!, that is desperate. I would think the risks would be high, As a last resort, a course of opiates might be the last thing to try before ever thinking of drastic surgery. The exact surgical target would probably be unknown!

I am finding, varying the medications works for a while.

[Patsy11011 in reply to Hopeless100]

I am on opiates now but do not like the heady feeling, side affects are anxiety and panic attacks.I am thinking the best thing is to withdraw from all meds under supervision and start again, I'm sure some of the symptoms are from augmentation {rebound)

[cnagy44]

February 10, 2019 Sorry to hear of your plight. I can understand. I have tried acupuncture and massage therapy with some success. You might be able to find a school that teaches these. Students can practice on you. It is a way to save money.