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