Junior Member
|
|
Join Date: Nov 2009
Posts: 33
|
|
Junior Member
Join Date: Nov 2009
Posts: 33
|
Quote:
Originally Posted by fmichael
Dear finrac -
I agree with Kathy 100%. There is no question that the first eight to ten months or so is the most important time to intervene, when the illness is characterized by neuro-autoimmune inflammation. In that regard, if you could get immediate access to a rheumatologist who could in turn prescribe with Infliximab, a "tumor necrosis factor-[alpha] antibody," commonly used in the treatment of autoimmune illnesses, it could be of great benefit. For just one article you could print out and share with her husband's physician, see, Successful Intravenous Regional Block with Low-Dose Tumor Necrosis Factor-[Alpha] Antibody Infliximab for Treatment of Complex Regional Pain Syndrome 1 [a.k.a. RSD], Bernateck M, Rolke R, Birklein F, Treede RD, Fink M, Karst M, Int Anesth Res Soc. 2007;105(4):1148-1151 (full text at) http://www.rsds.org/2/library/articl...teck_Rolke.pdf
Along with Kathy, I urge you to check out the RSDSA site: http://www.rsds.org/index2.html They have a particularly good page of articles written for lay persons http://www.rsds.org/3/treatment/index.html as well as a library of freely downloadable articles from medical journals around the world http://www.rsds.org/2/library/articl...html#Treatment
But speaking of worldwide searches, I just searched the "PubMed" data base maintained by the by the U.S. National Library of Medicine, National Institute of Health (NIH) at http://www.ncbi.nlm.nih.gov/pubmed with the search "CRPS Ireland" and came up with only one abstract, but it may be promising:
Ann Intern Med. 2010 Feb 2;152(3):152-8.
Intravenous immunoglobulin treatment of the complex regional pain syndrome: a randomized trial.
Goebel A, Baranowski A, Maurer K, Ghiai A, McCabe C, Ambler G.
University of Liverpool, Clinical Sciences Building, University Hospital Aintree, Liverpool L9 7AL, United Kingdom.
Comment in:
Ann Intern Med. 2010 Feb 2;152(3):188-9.
Summary for patients in:
Ann Intern Med. 2010 Feb 2;152(3):I48.
Abstract
BACKGROUND: Treatment of long-standing complex regional pain syndrome (CRPS) is empirical and often of limited efficacy. Preliminary data suggest that the immune system is involved in sustaining this condition and that treatment with low-dose intravenous immunoglobulin (IVIG) may substantially reduce pain in some patients. OBJECTIVE: To evaluate the efficacy of IVIG in patients with longstanding CRPS under randomized, controlled conditions. DESIGN: A randomized, double-blind, placebo-controlled crossover trial. (National Research Registry number: N0263177713; International Standard Randomised Controlled Trial Number Registry: 63918259) SETTING: University College London Hospitals Pain Management Centre. PATIENTS: Persons who had pain intensity greater than 4 on an 11-point (0 to 10) numerical rating scale and had CRPS for 6 to 30 months that was refractory to standard treatment. INTERVENTION: IVIG, 0.5 g/kg, and normal saline in separate treatments, divided by a washout period of at least 28 days. MEASUREMENTS: The primary outcome was pain intensity 6 to 19 days after the initial treatment and the crossover treatment. RESULTS: 13 eligible participants were randomly assigned between November 2005 and May 2008; 12 completed the trial. The average pain intensity was 1.55 units lower after IVIG treatment than after saline (95% CI, 1.29 to 1.82; P < 0.001). In 3 patients, pain intensity after IVIG was less than after saline by 50% or more. No serious adverse reactions were reported. LIMITATION: The trial was small, and recruitment bias and chance variation could have influenced results and their interpretation. CONCLUSION: IVIG, 0.5 g/kg, can reduce pain in refractory CRPS. Studies are required to determine the best immunoglobulin dose, the duration of effect, and when repeated treatments are needed. PRIMARY FUNDING SOURCE: Association of Anaesthetists of Great Britain and Ireland, University College London Hospitals Charity, and CSL-Behring. PMID: 20124231 [PubMed - indexed for MEDLINE]
http://www.ncbi.nlm.nih.gov/pubmed/20124231
That in turn led to the home page of the Association of Anaesthetists of Great Britain and Ireland http://www.aagbi.org/ along with their contact information:
21 Portland Place, London, W1B 1PY, England.
Tel +44 (0)20 7631 1650 Fax: +44 (0)20 7631 4352 Email: info@aagbi.org Since they partially sponsored the study just mentioned, one thought would be to contact them for the names of anesthetists sub-specializing in pain medicine in Ireland.
That said, a better thought may be to directly contact one of the authors of the study, who in addition to being one of the leading specialists in the U.K. in the treatment of RSD, has chosen to make herself publically available, Candy McCabe, RGN, MSc., PhD. of the Royal National Hospital for Rheumatic Diseases, Bath, among other positions:
Tel: +44 (0)1225 465941 ext 349 or +44 (0) 1225 386259
Email: C.McCabe@bath.ac.uk
http://www.bath.ac.uk/pip/directory/profile/827314 Among other things, Dr. McCabe is a specialist in an almost magically impossible treatment, if initiated soon enough, Mirror Visual Feedback (MVF). For an easily accessible article on the subject, take a look at Body Perception Disturbance (BPD) in CRPS, Lewis J, McCabe CS, Practical Pain Management 2010 Apr:60-66 http://www.rsds.org/2/library/articl..._April2010.pdf For another, see, Mailbag: Mirror Therapy (RSDSA) http://www.rsds.org/1/publications/r...pring2008.html
(In fact, a "Folding Mirror Therapy Box" can be yours for the mere cost of £24.99 along with another £4.99 for "World Wide Delivery," as per the advertisement the RSDSA chose to post with its original link at http://www.reflexpainmanagement.com/inc/sdetail/176)
If Dr. McCabe's unit is unable to treat your husband directly, I would hope that she would otherwise be able to guide him into competent Irish hands.
Good luck!
Mike
|
fmichael, you are the KING of CRPS research. You find the most amazing information out there. I am in awe. Picture me genuflecting.
The info about MVF is particularly interesting to me because part of my husband's exercise routine includes him moving the fingers of his good hand in tandem with the fingers of his injured hand, making fists, flexing the individual digits of his fingers, etc. Sort of a MVF without the mirror. The physical therapists started him doing this almost from Day 1.
I don't know how or if this helped in his recovery, but as I said above, I believe that exercise played a big part.
|