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.
Rustsmith
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Re: Morphine pump & Deep Brain Stimulation questions

Postby Rustsmith » Fri Dec 02, 2016 12:10 am

My biggest fear at this point is that they tell me that they decided to take someone else without doing any testing of the candidates. I could accept that one of the others was a better match, but at least I would like a shot at it.

However, I very much suspect that the message will be a continuation of "be patient". After working in research for my entire career, I know that starting up a new line of research, no matter how promising it looks, takes lots of time and approvals. And I suspect that this goes double, triple, ... for medical research where people's lives are at stake and the personal injury lawyers are waiting on the sidelines for something to go wrong.

So, although I will be going into the appointment with great anticipation, I fully expect that I won't be coming away with anything new in this area. I had a sleep study 2 wks ago, so if she can see something in the results of the study that will help me to regularly get more than 6 hrs of sleep, I will be happy anyway.
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.

Rustsmith
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Location: Pueblo, Colorado

Re: Morphine pump & Deep Brain Stimulation questions

Postby Rustsmith » Wed Dec 14, 2016 11:56 pm

Here's the report I promised.

As I suspected, nothing new has transpired on the DBS front. My doctor said that she emailed her co-investigator a week or two ago, but had not heard anything back. She promised to follow up once again. She was also rather pleasantly surprised to hear that there are a number of other people with severe RLS who are interested in seeing how this goes. We chatted a bit about the problems and future of opiates for treating RLS. I explained that I feel what I can only describe as terror when thinking about what I would face if the government made it impossible for me to get them.

She also explained that the two of them first need to prepare a paper for publication that summarizes the current facts about the use of DBS to treat RLS. Once that is published, then they can request grant funding for a research project. She had mentioned that she knew that her co-investigator also had potential candidates. What I heard today is that she does not know whether these others are pure RLS patients (like me) or whether they are Parkinson's patients who also have RLS. If it is the latter, then it may increase my chances of being picked since research studies like simple, unambiguous results and not something where others can criticized that the DBS fixed the Parkinson's, so the RLS simply went away. Of course, there is also the argument that DBS is an established treatment for Parkinson's, so the risk to the patient would be lower.

As for the results of my sleep study, it ruled out PLMS and sleep apnea as the source of my insomnia. So, no new changes to my treatment and I will just have to live with an average of 6 to 7 hrs of sleep (including naps) each day. Good thing I am retired and can nap most anytime I need it.
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.

ViewsAskew
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Re: Morphine pump & Deep Brain Stimulation questions

Postby ViewsAskew » Thu Dec 15, 2016 5:54 pm

Thanks for the report, Steve.
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.

Mister_Ed
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Re: Morphine pump & Deep Brain Stimulation questions

Postby Mister_Ed » Sun Dec 18, 2016 7:45 pm

The pump is installed and running great! Since 16 Dec at 10am I have not even the slightest twinge of RLS. it's a God send for me. The cons: about a 4-5" scar across the tummy (I selected the left side). On the spine at belt height, there is a 2" vertical scar. No SCUBA diving below 33 feet.

Recovery is straight forward, no heavy lifting, turning the waist, etc.

Let me make sure you understand my feelings - The morphine pain pump is great!!!! I will try to answer any questions you may have. Please email them to Ed at Goodrow dot us.

Signed;
I feel GREAT!!!!!

Ed

Rustsmith
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Re: Morphine pump & Deep Brain Stimulation questions

Postby Rustsmith » Sun Dec 18, 2016 10:46 pm

Ed, hope you weren't and avid scuba diver. If (when??) I eventually get DBS surgery, scuba diving is one of the things that I will probably need to give up. As I understand it, the controller/battery units are only good for pressures down to about 10 ft. Scuba has been a regular part of our vacations, so it would be a loss for me - but one that I would gladly give up just to have my RLS downgraded to mild levels.
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 » Mon Dec 19, 2016 4:23 pm

It's SundY afternoon, about 48 hours after the surgery and not a SINGLE feeling of RLS at all. I'm laying down on my couch and there is no twitching! I wish I could have done this years ago but last night with no throwing of my arms, no kicking of the legs I admit I broke down into tears. I'm more than happy to chat with anyone considering this procedure.
Recovery is about 6 weeks, another interesting issue with the pump is SCUBA diving. 33' is the max depth. If you weld, you need a really good lead apron overtop the pump.

To sum it up...I LOVE IT!!!!

Ed

Polar Bear
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Re: Morphine pump & Deep Brain Stimulation questions

Postby Polar Bear » Mon Dec 19, 2016 5:03 pm

I can feel your positive joy - so happy for you :)
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

Joanie60
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Re: Morphine pump & Deep Brain Stimulation questions

Postby Joanie60 » Mon Dec 19, 2016 7:29 pm

Ok, very ignorant question here. How does the morphine get in the pump? How frequently do you "refill" it? Can you get liquid morphine at the pharmacy? With the huge crackdown on opiates (and the dark future predicted by my doc for being able to continue on methadone) I am curious if this is a safer and/or more controlled distribution of the drug...therefore perhaps more agreeable to the medical field?

I have been on 15mg of methadone for almost 2 years with no increases (once we found the sweet spot of 15mg). I have symptoms 24/7 usually just waist down but they are pretty well controlled. I am aware of my RLS almost 100% of the time but it does not interfere too much (partly because I have already made the adjustments like being the most helpful person in any situation..so they think...it is because I cannot sit still for more than 5 minutes so I hop up and fetch haha, aisle seats on airplanes, frequent walk breaks at work, hot water bottles, etc etc etc). I am not at the point of needing a pump I believe but I know I am at the end of my doctor's road. Once 15mg is not enough, or once the FDA cuts off methadone, I am royally screwed.

Thanks for letting us know about your journey Mr Ed!!

Mister_Ed
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Re: Morphine pump & Deep Brain Stimulation questions

Postby Mister_Ed » Mon Dec 19, 2016 8:38 pm

Let me run through your questions......

Refilling: it's dependent on how much your prescribed as well as pump capacity. I'm looking at getting mine refilled about every 3-4 months. The refilling process is quite easy. On the pump facing outside my body there is a rubber type filling port. I think it's about the size of a dime. A doctors office has to fill it, not the patient. They feel that port and refill the tank. My daily dose is 1mg, yes, one mg. Having it filled in the Docs office is an extra level of advoiding security.

The biggest issue is getting the pump installed for RLS. I had to " wink wink" at a few Docs to get them to seriously consider the pump for RLS. If I hit a road block, I said it was constant lower back pain. I figured a few white lies is worth the relief!!

Ed

Joanie60
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Re: Morphine pump & Deep Brain Stimulation questions

Postby Joanie60 » Mon Dec 19, 2016 8:46 pm

Thanks. What a great idea (once insurance co pays for surgery). That certainly eliminates ability for abuse...which seems to be biggest argument against prescribing opiates!

legsbestill
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Location: Dublin Ireland

Re: Morphine pump & Deep Brain Stimulation questions

Postby legsbestill » Mon Dec 19, 2016 11:36 pm

So happy for you Mr Ed and many thanks for posting your experience. At present meds are controlling my RLS but it is very comforting to consider there is yet another option.

ViewsAskew
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Re: Morphine pump & Deep Brain Stimulation questions

Postby ViewsAskew » Tue Dec 20, 2016 6:38 am

What a wonderful story - so happy for you!
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.

Mister_Ed
Posts: 17
Joined: Fri Jan 22, 2016 6:24 am

Re: Morphine pump & Deep Brain Stimulation questions

Postby Mister_Ed » Fri Dec 23, 2016 11:27 pm

Hi all, just a quick update. I suffered for 20 years with RLS and now, I'm on the other side of being "cured". I knows been just a week since my morphine pump was installed but the relief is absolutely amazing! Not a single RLS twitch, spassim, or urge to move.

Talk to your Doc about the medical pump, it's been the biggest Christmas gift I've ever had.

Ed

Polar Bear
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Re: Morphine pump & Deep Brain Stimulation questions

Postby Polar Bear » Sat Dec 24, 2016 4:49 pm

A wonderful Christmas gift indeed - Enjoy your life change.
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

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

Re: Morphine pump & Deep Brain Stimulation questions

Postby Joanie60 » Sat Dec 24, 2016 5:00 pm

Agreed! I am so happy for you, and really appreciate that you are sharing your journey and giving hope to all of us

My virtual friends: Merry Christmas!!! And all the best in the New Year :-)

Hugs Joanie


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