Morphine pump & Deep Brain Stimulation questions

Use this section to discuss your experiences with prescription drugs, iron injections, and other medical interventions that involve the introduction of a drug or medicine into the body. Discuss side effects, successes, failures, published research, information about drug trials, and information about new medications being developed.

Important: Posts and information in this section are based on personal experiences and recommendations; they should not be considered a substitute for the advice of a healthcare provider.
Mister_Ed
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Joined: Fri Jan 22, 2016 6:24 am

Morphine pump & Deep Brain Stimulation questions

Postby Mister_Ed » Sat Jan 23, 2016 8:10 am

Has anyone heard of using a morphine pump which injects directly into the spinal column as a "cure" for RLS? I read where this procedure was being used in Sweden with very good success. I brought this treatment up with my Doc but as of now, there has been no forward movement in trying it but he is researching it because I printed off articles, gave him reports on post surgical results and more importantly- the other Doctor's contact information.

He recommended Deep Brain Stimulation (DBS) but the surgeon was unwilling since they have never done the surgery for "just a RLS" patient. I was deeply disappointed with that answer but she is very busy treating Parkinson's patients with DBS. For those interested; DBS is placing electrodes into the brain to block signals which causes the jerky movement Parkinson's causes. This procedure is done while the patient is awake! Yikes!

There are some great videos on the subject available, some I believe are still on YouTube.

In my opinion, We as RLS suffers have to educate our doctors on treatments. Once Doctors hear that other doctors are even considering a "radical" treatment the stigma of being a renegade is replaced by consideration. My Doctor is greatly concerned that 40mg of methadone a day for 3 years is the cause of some heart issues which now require surgery. Worse news -Doc wants me off the methadone for a week prior to the surgery so it won't interfere with 8 hours of sedation.

Look forward to hearing if others have heard of DBS or morphine pumps as treatment options.

Ed

ViewsAskew
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Re: Morphine pump & Deep Brain Stimulation questions

Postby ViewsAskew » Sat Jan 23, 2016 8:58 pm

I agree, Ed, we have to educate them. Even when you go to one of the "best in class" docs, they often have a more limited perspective of things.

One of our European members has written about DBS in the past. You might want to search on it and see what you find. There was another interesting idea - but it escapes my tired brain at the moment. Since our members tend to come and go based on who well they are doing, searching is often the only way to find out about our members' experiences.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

badnights
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Re: Morphine pump & Deep Brain Stimulation questions

Postby badnights » Mon Jan 25, 2016 9:19 am

I found a case study of DBS for WED/RLS and posted in reply to your topic in Just Joined.
viewtopic.php?f=2&t=9525&p=83252&hilit=brain#p83252

There have been a few discussions of morphine pumps here, try searching on morphine pump in the search bar at top right. eg. viewtopic.php?f=5&t=4749&p=74382&hilit=morphine+pump#p74382
is one of the results.
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice

Joanie60
Posts: 179
Joined: Thu Mar 15, 2012 2:48 pm

Re: Morphine pump & Deep Brain Stimulation questions

Postby Joanie60 » Sat Mar 19, 2016 3:11 am

Ed, I was just catching up on some old posts and saw your message. Steve (Rustsmith) just posted info about his appointment with a new doctor, thought you might be interested. Again, this is not MY experience, but I am sure you could ask Steve about it!

I met with my doctor at the Univ of Colorado Medical School yesterday. One of the neurology department's joint research areas is DBS. Since I have severe RLS and was a new patient, I was asked if I had any interest in becoming a research subject. Although I am very interested in participating in a clinical trial, DBS is a bit extreme for me right now, even if the doctor joking remarked that it could result in getting the procedure named after me. I was desperate for help at the time, but not so desperate that I would submit to research level neurosurgery.

If you are interested, check out the department at:

http://www.ucdenver.edu/academics/colle ... fault.aspx


Joanie

QyX
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Location: Berlin / Germany

Re: Morphine pump & Deep Brain Stimulation questions

Postby QyX » Thu Apr 07, 2016 9:06 am

Before you implant an Morphine pump, why not taking extended release morphine?

I do it and it works fine.

Mister_Ed
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Joined: Fri Jan 22, 2016 6:24 am

Re: Morphine pump & Deep Brain Stimulation questions

Postby Mister_Ed » Thu Jun 30, 2016 5:13 pm

I had a lumbar puncture yesterday to measure the relief from severe RLS with morphine being injected directly into the spinal column. The Doc said a drop of morphine in the spine is the same a 300 drops orally. I was quite impressed with the results for the first 6-8 hours. After 8 hours I began to feel the crawling sensation in my arms and the dancing legs.

I'm proceeding with getting a pump installed to hopefully kill the RLS every hour of the day!

Ec

Rustsmith
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Re: Morphine pump & Deep Brain Stimulation questions

Postby Rustsmith » Thu Jun 30, 2016 8:18 pm

Mr Ed, as followup to your original question about Deep Brain Stimulation (DBS), I have done a bit more investigation since my doctor raised the question to me earlier this year. It seems that the number of reported uses of DBS for just RLS is exactly one! And the results of that surgery were somewhat mixed. The woman who received the unit had the urge to move part of her symptoms relieved, but the pain component of her RLS did not improve.

So, the reason that they surgeon that you consulted refused to do DBS was simply that the surgery is still considered experimental for RLS, even though the same procedure is now routine for Parkinson's. As an experimental procedure, the bureaucracy involved with all of the approvals can be excessive outside of a research facility.

But with that said, a discussion between the experts at the Sleep 2015 conference appeared to result in agreement that DBS is worth investigating as a form of alternative treatment for RLS.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Mister_Ed
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Joined: Fri Jan 22, 2016 6:24 am

Re: Morphine pump & Deep Brain Stimulation questions

Postby Mister_Ed » Tue Nov 29, 2016 6:34 am

Wonderful news, on 16 Dec I'm having the pump installed! I spend 1 night in the hospital and hopefully it wii kick the RLS bug in the butt!

I did 20 years in the Army without getting a tattoo. But now.....I'm thinking getting a nuclear reactor warning sign over the pump! I bet the people at TSA will freak out!

Ed

ViewsAskew
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Re: Morphine pump & Deep Brain Stimulation questions

Postby ViewsAskew » Tue Nov 29, 2016 7:28 am

WOW!
Ann - Take what you need, leave the rest



Managing Your RLS



Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Polar Bear
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Re: Morphine pump & Deep Brain Stimulation questions

Postby Polar Bear » Tue Nov 29, 2016 9:03 am

We will really look forward to hearing how this works for you. (love the idea of the tattoo :)
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

Rustsmith
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Re: Morphine pump & Deep Brain Stimulation questions

Postby Rustsmith » Tue Nov 29, 2016 11:03 am

Sounds great, I really hope this works out for you. And I love the idea of complicating TSA's life. They are convinced my right knee has something in it and require a pat-down every time that I don't get cleared by Pre-Check. There is nothing unusual about my knee and the seem surprised when I tell them where the machine is going to highlight before they see the scan result.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Joanie60
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Joined: Thu Mar 15, 2012 2:48 pm

Re: Morphine pump & Deep Brain Stimulation questions

Postby Joanie60 » Tue Nov 29, 2016 1:08 pm

I can't wait to hear about your experience!!! Congrats, how exciting :-)

Steve: have you considered Global Entry? It costs $100 for five years and puts you in TSA PreCheck for every flight. The procedure is quite painless...requires an on-site visit to airport for interview and fingerprinting, but then you have five years of keeping your shoes on!!!

Rustsmith
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Re: Morphine pump & Deep Brain Stimulation questions

Postby Rustsmith » Tue Nov 29, 2016 3:10 pm

If I were still traveling like I did before I retired, then Global Entry would be a no brainer. But I don't travel as much anymore (maybe 6 trips a year) and I get Pre-check more than half the time. So I tolerate the occasional checks. Also, my wife travels in a wheelchair and that usually alters the way we get handled by TSA (other than scanning my knee).
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

legsbestill
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Joined: Tue Aug 30, 2016 7:22 pm
Location: Dublin Ireland

Re: Morphine pump & Deep Brain Stimulation questions

Postby legsbestill » Thu Dec 01, 2016 9:59 pm

We will all be watching this space - post 16th Dec - with great interest. You have my huge respect and gratitude for taking this exciting decision. I can't wait to hear how you get on. Best of luck.

Joanie60
Posts: 179
Joined: Thu Mar 15, 2012 2:48 pm

Re: Morphine pump & Deep Brain Stimulation questions

Postby Joanie60 » Thu Dec 01, 2016 11:00 pm

Ditto!! We are all with you in spirit on this journey!

:-)


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