Rosie -

Excuse my poor memory, but pending DBS, it's my understanding that Baclofen pumps are available from the NHS. Have you tried one?

Please see the discussion in Ali's thread of a fortnight/two weeks ago, Bacofen Pump and Pain Control, including the following at http://neurotalk.psychcentral.com/sh...d.php?t=129262:

Intrathecal baclofen for dystonia of complex regional pain syndrome, van Rijn MA, Munts AG, Marinus J, Voormolen JH, de Boer KS, Teepe-Twiss IM, van Dasselaar NT, Delhaas EM, van Hilten JJ, Pain 2009 May;143(1-2):41-7, Epub 2009 Feb 18, FULL TEXT @ http://www.rsds.org/2/library/articl...G_MarinusJ.pdf

Department of Neurology, Leiden University Medical Center, P.O. Box 9600, 2300 RC Leiden, The Netherlands.

Comment in:

Pain. 2009 May;143(1-2):3-4.

Abstract
Dystonia in complex regional pain syndrome (CRPS) responds poorly to treatment. Intrathecal baclofen (ITB) may improve this type of dystonia, but information on its efficacy and safety is limited. A single-blind, placebo-run-in, dose-escalation study was carried out in 42 CRPS patients to evaluate whether dystonia responds to ITB. Thirty-six of the 38 patients, who met the responder criteria received a pump for continuous ITB administration, and were followed up for 12 months to assess long-term efficacy and safety (open-label study). Primary outcome measures were global dystonia severity (both studies) and dystonia-related functional limitations (open-label study). The dose-escalation study showed a dose-effect of baclofen on dystonia severity in 31 patients in doses up to 450 microg/day. One patient did not respond to treatment in the dose-escalation study and three patients dropped out. Thirty-six patients entered the open-label study. Intention-to-treat analysis revealed a substantial improvement in patient and assessor-rated dystonia scores, pain, disability and quality-of-life (Qol) at 12 months. The response in the dose-escalation study did not predict the response to ITB in the open-label study. Eighty-nine adverse events occurred in 26 patients and were related to baclofen (n=19), pump/catheter system defects (n=52), or could not be specified (n=18). The pump was explanted in six patients during the follow-up phase. Dystonia, pain, disability and Qol all improved on ITB and remained efficacious over a period of one year. However, ITB is associated with a high complication rate in this patient group, and methods to improve patient selection and catheter-pump integrity are warranted.

PMID: 19232828 [PubMed - indexed for MEDLINE]

http://www.ncbi.nlm.nih.gov/pubmed/19232828

The article suggested that results with Baclofen pumps have been mixed. But having the pump "explanted" in six of thirty-six patients following the end of the trial suggests that five out of six patients preferred life with it than without. Still, the article notes a relatively high rate of mechanical problems, implying, at least at the time of the study, that this was still a work in progress.


Mike

Thanks Pete and Mike,

My hip and knee are a bit better although my leg is still hyper extended although mum and James can now bend my hip 20 degrees and bend my knee to 80 degrees. They gave me 20mg rectal diazipam (which we normally use for storms or sedation and started physio. The leg is still shaking a lot of the time but not as badly so fingers crossed we've got it under control - it's just going to take a long time to get it back. Mum and James both feel that if my joints go into that sort of spasm that we have to get it out as soon as possible or it can become a permanent contracture.

Mike - I've had the trial for the baclofen pump as I take 100mg a day of baclofen. However, it didn't make a large enough difference for me to go through the surgery, especially considering how much pain I am in whenever I come round from a general anaesthetic.

Thanks

xxxxx

Frogga.

When my spasms are out of control I park myself in my bathtub with epsom salts. Once I am good and waterlogged I get out and climb under my heating blanket and sit on my heating pad. it causes me to sweat horribly, but for some reason it breaks up the spasms. Good luck!

Kim

Dear Rosie -

Should have picked up on something you said in another thread about your doctor's reaction to smoking, to the effect that you would be better off with cannabis. It's true. I personally am prescribed a drug called Marinol, which contains an exact copy of one of 9 naturally occurring THC molecules, and it's the best thing I know if for spasms, by far. The only problems with it are (1) it takes a while to come on but then your're stoned for hours - too long really - and (2) it's not a nice sharp crisp high, but something definitely more stolid. Sort of like cheap Mexican pot from 40 years ago, before everyone got into the cultivation of bigger and stickier buds. So forget about being productive on it in any sense. And, oh yeah, it leaves you (Not sure why they had to choose that particular THC to replicate, could have been the easiest, my docs don't know.)

But speaking of docs, I roll a die every time I go in to see my pain specialist and last week I was called on to produce a sample of my renal output. Not sure what would happen if they found a few unauthorized THC molecules in the stew - legal medical marijuana is after all the rage in California and I'm not under any formal "pain contract" - but where I have a great pain doc. who is comfortable prescribing Marinol in 5 mg. capsules (up to 4 /day) but NOT medical marijuana, I wouldn't want to test the professional relationship by adding something unauthorized to the mix. So I don't.

That said, I understand the same stuff is available in Canada in an aerosol spray that's shot in the mouth/under the tongue. No idea what's available in the UK, but it's certainly worth checking out if you haven't done so already. MS patients swear by the real thing.

Mike

Arizona will be voting November 2 on a Proposition (203) to pass the Arizona Medical Maijuana Act. Dispensaries will be limited to 124 in the state and you must have cancer, glaucoma, HIV, AIDS, Hep C, amyotrophic lateral sclerosis, chron's disease, agitation of Alzheimer's Disease or a chronic or debilitating disease of medical condition that produces one or more of the,following: cachexia or wasting syndrome; severe and chronic pain, severe nausea, seizures, including those characteristic of epilepsy or severe and persistent muscle spasms, including those of MS.

From what I've seen in other state's dispensaries, it looks as if each strain is designed with a particular goal in mind, with some being different strengths. The dispensary person keeps the customer's purchase on file and can respond better if Joe comes in and says the last strain didn't have long lasting pain relief.

I personally would like alternatives to Percocet and Gabapentin so I can get rid of these awful side effects, just wouldn't like to smoke it nor get the muchnies. I'm a baker so could try incorporating into something. I'm asking my pain manager this week what the ramifications would be if the bill passes.

I'm going to try to compose a note to some people in my community urging them to vote for this Proposition. Hope I don't get any blunts burned in my front yard, ha. If it passes in this state I'll faint.

Good luck Rosie.

I have found medical marijuana to be the only thing to reduce my spasms. And really the pain. I also had the baclofen trial which thankfully went better then planned I'll have the permeant one implanted oct 5. I use a vaporizer to medicate since it is 100x better then smoking it. I've found eating it does not work as well.
I hope you find relief in your spasms. They are the worst. You'll be in my prayers.

I to think it helps lower the pain of my rsd and the twitches i get in my foot..