Is a DBS operation even remotely possibly useful to treat RLS

[Pete-1]

SInce PD and RLS have some commonality in the form of Dopamine defficiency, I was wondering if a DBS sysrtem may be applicable for RLS too?

[Pete-1]

Yes and you have to remain awake during the surgery too.

Well its very good for some PD people.

I have encountered a lady on another forum who had a DBS operation. Prior to which she would freeze, not just for maybe 30 seconds or so like I do but for several hours and that occurred 2 or 3 times a week.

Now she moves around normally and takes far fewer pills. I'm sure I have heard that DBS is also very good in reducing PD tremor.

[nightdancer in reply to Pete-1]

yes, and it is done rarely. Also used for epilepsy, but never been studied for RLS, and RLS is different than PD in many ways. Just because the dopamine system is involved with SOME people, does not mean that what works for PD or Epilepsy will work for RLS, whe it comes to ops like this, to be really clear. I am glad to hear that it is helping some PD people, but it is considered experimental in most places.

[Hidden]

I cant say i have heard of anyone freezing by having RLS....? Parkinsons Disease and RLS, are completely different diseases, the only similarity is we can use the Dopamine agonists at a lower dose. I dont think DBS would work for RLS, i am sure the experts would have looked into it by now. If it works for people with Parkinson Diseases then thats good.

[peterk in reply to Hidden]

Oh my goodness I would never let any one do this to me for RLS and I don't think it's used for RLS. Never really heard of it.

[Hidden]

There are times in my life when I sink to an all time low after several

nights/days of being awake against my will. Catch me on one of

those days and I will jump right into that ! I'm respectfully

replying to this post and am very serious. I wouldn't even ask

questions but just do it because on those days, I am in such

a daze.

[lilacladyuk]

Hi i was refered to Bristol Hospital for DBS for my severe RLS but was told they cant do it, it has only been done for PD or Dystonia, and has never been done for just RLS.

[Pete-1 in reply to lilacladyuk]

That's interesting, For someone to know it is not appropriate for RLS kind of implies that it has been tried and found no useful benefit..Perhaps I'l rumage around the web and see what I can uncover.

[nightdancer in reply to Pete-1]

it means it has not been explored YET. They don;t even really know if it works for Parkinson's. It is experimental.

[Chelseaman]

Hi Pete

I can honestly say that I have not heard of people "freezing up" at all, it must be awful. Sorry I cannot be of any help with your question, but I wish you the best of luck. Barry

[nightdancer]

No one has ever used DBS for RLS. It has not been studied, just speculation. Parkinson's and RLS are soooo different, I doubt it serioously. It is not approved anywhere for that use anywhere.

[nightdancer]

I forgot to add that it is like a pacemaker for the brain that they implant. We never know, it could happen in the future.

[nightdancer]

The "pacemaker" is to help rigidity of the muscles in PD, and loosen them up like in a reply above. With PD you get the "freezing" or rigidity of muscles, not with RLS. And, things like involuntary hand tremors are found in PD, not RLS. It was designed to "loosen things up", and RLS is not rigid in any way. My father had PD for the`last 8 yrs of his life, so I know about the symptoms and the difference in how PD and RLS present themselves. I was his caregiver 24/7, so up close and personal. We had to figure it all out ourselves, because by that time he had had a stroke and was developing Alzhemer's, so he could not tell us. It was a LOT of guessing and research and doctors. So, DBS was not designed for RLS at all.