Restless Legs Syndrome (RLS) Discussion Board

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.

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.

Thanks for the report, Steve.

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

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.

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

I can feel your positive joy - so happy for you

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!!

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

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!

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.

What a wonderful story - so happy for you!

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

A wonderful Christmas gift indeed - Enjoy your life change.

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