Thanks for the reply mike

Does anyone know if there is some kind of rehabilitation center in Saarbrücken managed by Dr. Peter Rohr?

I am still in Germany and we are planning to go back home over the weekend unless we can organize an appointment with Dr. Peter Rohr for next week. I would really kill me to catch 2 flights back home and then another 2 back up to see him. It would make much more sense to see him beginning next week and start any program.

Does anyone know if there is a specific RSD program offered in by Dr. Peter Rohr and his team in Saarbrücken?

Thanks,

Nigel

Nigel -

I don't know what he's currently doing, but Dr. Rohr ran the ketamine coma trials of Dr. Schwartzman's that were conducted in Saarbrücken: some of the cases were handled at another center.

Unless a doctor in Germany deems your CRPS as too advanced (which I doubt) AT A MINIMUM you should be getting a 3 - 4 infusion of local anesthetic at the site of the pain, otherwise known as continuous regional anesthesia, which I understand to be the standard practice today in Germany and France. Would that it was generally available in the United States, see below.

Ideally, they would add some ketamine to the mix, but I seem to recall that it may not available for patients in Germany: on account of which it is my understanding that Dr. Schwartzman's office provided the cash paying patients from the US. For more on the procedure I am suggesting, see, Everett A, Mclean B, Plunkett A, Buckenmaier C, A Unique Presentation of Complex Regional Pain Syndrome Type I Treated with a Continuous Sciatic Peripheral Nerve Block and Parenteral Ketamine Infusion: A Case Report, Pain Medicine 2009 Sep;10(6):1136-9, Epub 2009 Sep 9, FULL ONLINE TEXT @ http://www.rsds.org/2/library/articl...n_Plunkett.pdf

If you are in Saarbrücken, I would absolutely urge you to seek out Dr. Rohr. You may have to come back in a few weeks for an appointment - I don't know - but that would be mere detail, all things considered.

Mike

Hey Mike,

Thanks for your advice.

My neuro doctor suggested that I do have a pian syndrome and I can call it RSD or CRPS as its the same thing apparently. However he did say i am not a bad case as i dont have any fractures or nerve damage. Good or bad, im still very immobile, sitting down for 90% of the day and hardly able to walk. Also, the pain has traveled to the opposite leg and left arm.

Although I have been 6 months in pain, he said that time is not a issue for me and he is confident that with the medication he prescribed together with slow PT and physiological support I will get better in 2 - 3 months.

My real question is (same as my other post) will the medication (lyrical,Amytriptaline & muscle relaxant) PT and physiological support be enough to actually put me into remission considering I have been 6 months suffering and the condition spreading? Or should I be looking into more aggressive treatment at this stage?

Yes. See my last post. Then too, there is always this to consider. Schwartzman RJ, Erwin KL, Alexander GM, The Natural History of Complex Regional Pain Syndrome, Clin J Pain 2009;25:273-280, FULL ONLINE TEXT @ http://www.rsds.org/2/library/articl...lexanderGM.pdf

Or this, Libon DJ, Schwartzman RJ, Eppig J, et al, Neuropsychological deficits associated with Complex Regional Pain Syndrome, J Int Neuropsychol Soc. 2010 May;16(3):566-73, Epub 2010 Mar 19, FULL ONLINE TEXT @ http://www.rsds.org/2/library/articl...ychol_2010.pdf

Please read these articles carefully. Bottom line: you want to step on this thing as fast as you can. "With extreme prejudice."

Mike

Had a good read on the articles. Have been doing quite alot of research lately and understating more what RSD is about.

My main question is - Does or can the medication put RSD into remission (starting them 5/6 moths after the RSD started) or is it used to make the condition more manageable?

Also, how long should i give it a chance to work before looking into other treatment?

Every case is different...

Personally... my rsd was caught early by an amazing doctor with meds, blocks, etc.... and I am not reversed.... rsd has a mind of its own and there is no saying for sure of anything.... just seek out the best doctors you can RIGHT AWAY!!!

Nigel -

While children have been known to go into "spontaneous remission" for reasons that are not clear, I am unaware of any oral medications ever putting RSD into remission in an adult, save and except for Thalidomide and its derivatives, which is a scary drug from the Fifties that wound up producing tens of thousands of children with severe birth defects, and on top of that is well known to produce blot clots leading to strokes, pulmonary embolisms, etc. in patients who are also taking chemo or large doses of steroids, unless they are also on anti-coagulant therapies. (Did I say that it was later found to be effective in treating multiple melanoma?)

Beginning in 2004 or so there was a large multi-center study of one such derivative, Lenalidomide, and marketed as Revlimid by Celgene, which not only sought to test the effectiveness if the medication for CRPS, but did so without offering any anti-coagulant therapy (even daily aspirin) to study participants. I have spoken to one participant who denied ever being advised thee was a risk of clotting. The study was supposed to be completed in 3 years. Yet it was never published. And while there have been two first-person anecdotal reports on this forum of people who developed embolisms or strokes on the study or while taking Thalidomide thereafter any pros/cons about Dr. Wallace at UCSD? http://neurotalk.psychcentral.com/sh...d.php?p=700260 the drug had so many other potentially very nasty side effects http://en.wikipedia.org/wiki/Lenalidomide that it could have been anything.

At the present time, I am aware of the following therapies that have produced complete and apparently permanent remissions:

1. Continuous regional anesthesia: favored in France and Germany, but increasingly adopted by the U.S. military.. See, Everett et al, above, including citations therein http://www.rsds.org/2/library/articl...n_Plunkett.pdf and Use of continuous interscalene brachial plexus block and rehabilitation to treat complex regional pain syndrome of the shoulder, Detaille V, Busnel F, Ravary H, Jacquot A, Katz D, Allano G, Ann Phys Rehabil Med. 2010 Aug-Sep;53(6-7):406-16. Epub 2010 Jul 2 [Article in English, French]:

CRRF Kerpape, 56275 Ploemeur cedex, France. vdetaille@kerpape.mutualite56.fr

Abstract
OBJECTIVES: To evaluate the use of continuous interscalene brachial plexus block with bupivacaine to treat complex regional pain syndrome (CRPS) type 1 of the shoulder in adult patients who were refractory to standard therapies.

PATIENTS AND METHODS: We performed a prospective, cross-sectional study of 59 cases of treatment-refractory CRPS type 1 of the shoulder. The patients were treated with one week of continuous interscalene brachial plexus block with bupivacaine and concomitant rehabilitation in a specialist centre. After withdrawal of the catheter, rehabilitation was continued for a further 3 weeks. The outcomes at 1, 6 and 12 months were evaluated in terms of the Constant score, the verbal numeric rating scale (VNRS) for pain, joint range of motion and medication use. Patients were later interviewed by telephone and asked to state their professional situation, the current VNRS score for pain and the status of their CRPS.

RESULTS: In the first month of treatment, the mean VNRS pain score fell from 7.4 to 3.6, the Constant score rose from 21.7 to 56.6% and the joint range of motion increased from 5.4 to 29.9° for external rotation (ER) position 1 and from 38.6 to 74.2° for abduction. These improvements persisted over time, despite a very slight reduction at 6 months. 86% of the interviewed patients reported that the treatment protocol had improved or greatly improvement their condition. 46% of the respondees had been able to return to work.

CONCLUSION: Treatment with a combination of a 1-week continuous interscalene brachial plexus block and rehabilitation may be a good option for patients with CRPS type 1 of the shoulder and who are refractory to standard therapies.

PMID: 20650698 [PubMed - indexed for MEDLINE]

http://www.ncbi.nlm.nih.gov/pubmed/20650698 And note, at least the abstract fails to correlate length of disease onset before treatment with result; in many therapies whether or not the treatment begins in the acute/inflammatory stage of the illness makes all the difference, with sympathetic nerve blocks having the shortest window, typically between 3 - 4 months.

2. Sympathetic nerve blocks, common worldwide, but most likely to be effective if initiated within 3 - 4 months of onset of symptoms. Efficacy of Stellate Ganglion Blockade for the Management of Type 1 Complex Regional Pain Syndrome, Ackerman WE, Zhang JM, South Med J. 2006;99:1084-1088, FULL ONLINE TEXT @ http://www.rsds.org/2/library/articl...lion_block.pdf

3. Spinal Cord Simulators (in adolescents only). Spinal cord stimulation in adolescents with complex regional pain syndrome type I (CRPS-I), Olsson GL, Meyerson BA, Linderoth B, Euro J Pain 2008;12:53-59, FULL ONLINE TEXT @ http://www.rsds.org/2/library/articl..._Linderoth.pdf

4. Mirror Box Therapy, a U.K. favorite due to its low cost, but most effective if initiated within 8 weeks of onset, intermediate effectiveness out to a year. A controlled pilot study of the utility of mirror visual feedback in the treatment of complex regional pain syndrome (type 1), McCabe CS, Haigh RC, Ring EFJ, Halligan PW, Wall PD, Blake DR, Rheumatology 2003;42:97-101, FULL ONLINE TEXT @ http://www.rsds.org/2/library/articl..._Ring_etal.pdf

5. Regional Block with anti-TNF-[alpha] agent: note however that the case study was performed on a patient who had had CRPS for only three months, the researchers being no one's fools. [Experimental.] Successful Intravenous Regional Block with Low-Dose Tumor Necrosis Factor-[Alpha] Antibody Infliximab for Treatment of Complex Regional Pain Syndrome 1, Bernateck M, Rolke R, Birklein F, Treede RD, Fink M, Karst M, Int Anesth Res Soc. 2007;105(4):1148-1151, FULL ONLINE TEXT @ http://www.rsds.org/2/library/articl...teck_Rolke.pdf

6. Low Dose Ketamine Infusions: 10 4 hour infusions over two weeks @ 200 mg./4 hr. infusion. Currently the technique in vogue with surprisingly strong results among people who have chronic CRPS. Outpatient intravenous ketamine for the treatment of complex regional pain syndrome: A double-blind placebo controlled study, Schwartzman RJ, Alexander GM, Grothusen JR, Paylor T, Reichenberger E, Perreault M, Pain 2009 Dec 15;147(1-3):107-15, Epub 2009 Sep 23, FULL ONLINE TEXT @ http://www.rsds.org/2/library/articl...n_Pain2009.pdf Please note, however, that although the authors find that a large number of peoples' pain had gone into long-term remission, there was still no significant improvement in terms of "quality of life" issues. And unfortunately, Appendix II to the article, in which the "quality of life" scale is broken down, is not readily accessible.

AND

7. Electroconvulsive Therapy (ECT) currently experimental where there is no funding available to conduct large scale research trial (possibly using ketamine as the general anesthetic to make it less likely that a patient would know that a particular treatment session included "live" ECT). See, generally, Treatment of CRPS with ECT, Wolanin MW, Gulevski V, Schwartzman R, Pain Phys. 2007;10:573-578 FULL ONLINE TEXT @ http://www.rsds.org/2/library/articl...chwartzman.pdf AND Right Unilateral Electroconvulsive Therapy Treatment for CRPS, Michaels F Jr., Pract Pain Manage. 2008 March;68-75, FULL ONLINE TEXT @ http://www.rsds.org/2/library/articl...haels_CRPS.pdf Although all of the reported cases have come from case reports and small studies, what's impressive is that reviewing questionnaires sent to patients of a single neurologist (RJS) who had treated 656 cases of adults with CRPS who had had the disease for a year or more than one year, with 33 patients having been followed for 20 years or more, THERE WAS NOT A SINGLE CASE OF SPONTANEOUS REMISSION. The Natural History of Complex Regional Pain Syndrome, Schwartzman RJ, Erwin KL, Alexander GM, Clin J Pain 2009;25:273-280; FULL ONLINE TEXT @ http://www.rsds.org/2/library/articl...lexanderGM.pdf On account of which, it would be highly improbable that the outcomes of the small studies and case reports included in the foregoing articles would have occurred by chance.

Finally, while a large number of the ECT articles contain the recurring phrase "the mechanism is ECT is unknown," that can no longer be said, following the groundbreaking work of Rodolfo R. Llinás and others. For more on the role of the "edge effect," see, Thalamocortical dysrhythmia: A neurological and neuropsychiatric syndrome characterized by magnetoencephalography, Llinás RR, Ribary U, Jeanmonod D, Kronberg E, Mitra PP, Proc Natl Acad Sci U S A. 1999 Dec 21;96(26):15222-7, FULL ONLINE TEXT @ http://www.pnas.org/content/96/26/15222.full.pdf AND Abnormal thalamocortical activity in patients with Complex Regional Pain Syndrome (CRPS) Type I, Walton KD, Dubois M, Llinas RR, Pain 2010 Jul;150(1):41-51, Epub 2010 Mar 24, FULL ONLINE TEXT @ http://www.rsds.org/2/library/articl..._Pain_2010.pdf

So, if you want my inventory of those known treatments which may induce complete and sustained remission from CRPS. (And apologies to fans of anything I may have overlooked.)

Mike

PS As to your second question - how long should i give it a chance to work before looking into other treatment? - there's no fixed answer, it varies by treatment. For example, with ketamine infusions, while many patients have substantial relief early on, the real question is how long the relief lasts. On the other hand, with ECT (and by that, I urge people to consider using only a single electrode placed on the non-dominant side, commonly known as "Right Unilateral" or RUL, utilizing ultra-high voltages over incredibly short durations, so as to induce seizure with a signal that comes as close as possible to mimicking endogenous brain activity) the normal protocol is typically 10 - 12 sessions over 3 weeks, but I've seen people bail after 4 sessions because they were uncomfortable with the previously disclosed and temporary side-effects, while others have done through two full 12-session cycles before their CRPS went into remission, while others may never get relief. So, as with everything else, the answer is, it depends. As a practical matter, your physician may be in the best position to provide guidance: I've had two doctors I greatly respected discontinue therapies before the trial periods were over, simply because I had yet to manifest any improvement.

Thanks for the info on ECT, Michael. I'm curious - have you tried it? It sound promising.

Lori