[fmichael]

As many are aware, CRPS-1 (RSD) is now widely regarded - in its earlier stages - as a neuro-inflammatory disease. See, Neuropeptides, neurogenic inflammation and complex regional pain syndrome (CRPS), Birklein F, Schmelz M, Neurosci Letters 2008;437:199-202, FULL TEXT @ http://www.rsds.org/2/library/articl...in_Schmelz.pdf; Differential expression patterns of cytokines in complex regional pain syndrome, Uceyler N, Eberle T, Rolke R, Birklein F, Sommer C, Pain 2007;132:195–205, FULL TEXT @ http://www.rsds.org/2/library/articl...erle_Rolke.pdf; Intermediate stage complex regional pain syndrome type 1 is unrelated to proinflammatory cytokines, Munnikes RJ, Muis C, Boersma M, Heijmans-Antonissen C, Zijlstra FJ, Huygen FJ, Mediators Inflamm. 2005 Dec 14;2005(6):366-72, FULL TEXT @ http://downloads.hindawi.com/journal...005/947570.pdf, Six years follow-up of the levels of TNF-alpha and IL-6 in patients with complex regional pain syndrome type 1, Wesseldijk F, Huygen FJ, Heijmans-Antonissen C, Niehof SP, Zijlstra FJ, Mediators Inflamm. 2008;2008:469439, FULL TEXT @ http://downloads.hindawi.com/journal...008/469439.pdf.

Now, there is finally an indication that a stem cell therapy may be useful in the treatment of "neurological disorders with an inflammatory etiology." And that may fit the bill for "acute" or "intermediate" CRPS-1. Of course, there are already a number of promising treatments if the disease is diagnosed and treated early enough. See, e.g., 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 TEXT @ http://www.rsds.org/2/library/articl...teck_Rolke.pdf; 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 TEXT @ http://www.rsds.org/2/library/articl..._Ring_etal.pdf; and perhaps the "gold standard" of early care, 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, Everett A, Mclean B, Plunkett A, Buckenmaier C, Pain Med. 2009 Sep;10(6):1136-9. Epub 2009 Sep 9, FULL TEXT @ http://www.rsds.org/2/library/articl...n_Plunkett.pdf:

Abstract
OBJECTIVE: To successfully treat a patient with complex regional pain syndrome, refractory to standard therapy, to enable a rapid and full return to professional duties. SETTING: This case report describes the rapid resolution of an unusual presentation of complex regional pain syndrome type I after four days of treatment with a continuous sciatic peripheral nerve block and a concomitant parenteral ketamine infusion. The patient was initially diagnosed with complex regional pain syndrome (CRPS) I of the right lower extremity following an ankle inversion injury. Oral medication with naproxen and gabapentin, as well as desensitization therapy, failed to provide any relief of her symptoms. She was referred to the interventional pain management clinic. A lumbar sympathetic block failed to provide any relief. The patient was diagnosed with CRPS I and was admitted for treatment with a continuous peripheral nerve block and parenteral ketamine. CONCLUSION: This case suggests therapeutic benefit from aggressive treatment of both the peripheral and central components of CRPS.

PMID: 19744217 [PubMed - indexed for MEDLINE]

http://www.ncbi.nlm.nih.gov/pubmed/19744217

It is my understanding that the last technique is now standard in France and Germany when CRPS-1 is initially diagnosed, as it was in the case of this 17 year old West Point Cadet. For now, however, we have to file it under "how the other half lives."

Time will tell which of these "early therapies" proves to be the most reliable and cost-effective in the long run. That and too many patients face the Catch 22 that by the time they are allowed access to more expensive therapies, due to (1) a hesitancy among carriers (WC in particular) to accept a diagnosis of CRSP-1 until the patient is exhibiting virtually all of the 1994 criteria adopted by the Committee for Classification of Chronic Pain of the International Association for the Study of Pain (IASP) and/or (2) a requirement that less expensive/novel techniques be exhausted first, the sad truth is that their conditions will have become chronic, at which point therapies built around an anti-inflammatory model will have become irrelevant. Whereupon the known possible "cures" are reduced to various forms of ketamine therapy or electroconvulsive therapy, using only the newer and safer modality: and both of those may or may not provide permanent remission for a particularly patient. Which is again unfortunate, because applied early enough, the both the anti-inflammatory and “mirror therapy and graded motor imagery” treatments appear to have higher rates of success.

In any event, here's what just popped up under the heading of stem cell therapy: Mesenchymal Stem Cells: New Approaches for the Treatment of Neurological Diseases, Momin EN, Mohyeldin A, Zaidi HA, Vela G, Quiñones-Hinojosa A, Curr Stem Cell Res Ther. Epub 2010 Jun 9:

Department of Neurosurgery and Oncology, Brain Tumor Stem Cell Laboratory, The Johns Hopkins School of Medicine, Baltimore, MD, USA. aquinon2@jhmi.edu.

Abstract
Cellular therapies represent a new frontier in the treatment of neurological disease. Mesenchymal stem cells (MSCs), which can be harvested from bone marrow, adipose tissue, and umbilical cord blood, among many other sources, possess several qualities which may be used to treat diseases of the central nervous system. MSCs migrate to sites of malignancy, a property which may be used for the treatment of brain cancer. MSCs possess immunosuppressive properties, which may be used for the treatment of neurological disorders with an inflammatory etiology. Finally, MSCs restore injured neural tissue, a property which may be used for the treatment of neural injury. Approximately 23 clinical trials have been completed to date, with many more ongoing, and all have been listed in this review. The long-term safety of MSC-based therapies is not well established, and continues to be one major limitation to clinical translation. More broadly, only a small minority of clinical trials have employed rigorous designs that include prospective randomization, patients from multiple centers, clinically-relevant and reproducible endpoints, and adequate long-term follow-up. These limitations must be addressed before MSCs can enter widespread clinical use. Nevertheless, MSCs represent a promising new approach to treating diseases of the central nervous system that are traditionally associated with morbid outcomes. With additional pre-clinical and clinical studies that focus on their potential benefits as well as dangers, MSCs may one day find translation to clinical use in the setting of neurological disease.

PMID: 20528757 [PubMed - as supplied by publisher]

http://www.ncbi.nlm.nih.gov/pubmed/20528757

Mike

[Mslday]

Dear Mike,

As always you have provided a wealth of important information for us all. I've just arrived in Switzerland and will be sure to read these all more thoroughly once my jet lag wears off.

It was a version of the continuous peripheral nerve block you described that I had in Germany following the hardware removal from my RSD foot. While it did not make me pain free (it was too late in the game for me) I'm certain I would never have made it through that surgery as well as I did without that pain treatment.

I hope this information gets out to more doctors in North America so more new cases can be treated with the same level of success as this young girl experienced

Thank you for sharing your research with us all here.

I'll be sure to pass on any new information I get from my new doctors here.

Your friend

MsL

[fmichael]

Dear MsL -

Happy landing in Switzerland! The summer weather must be beautiful. I'm just trying to imagine it now.

Enjoy this new chapter of your life.

Mike


ps It's funny, after starting this thread, I realized I had forgotten all about another potential cure for chronic CRPS, "high dose" Ziconotide, a matter I just revisited in detail in another post. http://neurotalk.psychcentral.com/sh...511#post672511

[CRPStweet]

Anyone read of any work being done on stem cell therapy related to CRPS? (I found this 2010 post from fMichael). thx!

[tos8]

I have seen to many paitents go threw stem cell transplants or BMTs and the outcome isnt usally good! Your mortality rate is 40%! And then all the complications that usally come along with it (GVHD that attacks your organs and skin, VOD to the heart or liver which is usally fatal), NO THANKS! There are those few that make it. But its only those few. You live your life in the hospital, you dont look like the same person you were, you suffer greatly during it. As the drs say "We take the paitents to deaths door and hope they come back". Yeah I dont care how desprate I was! Its just not worth it unless your dieing from somthing like cancer and you feel its your only option left. But even then I just dont think its worth it.

[debbiehub]

I contacted a dr in Israel who does mcs, I would have to go to Israel and 3 months later to Switzerland , the cost of the tx is 36,000 not including air fair ...I copied the response to my neurologist, He said the tx is not very successful and they just want your money, This doc never worked w rsd but said he thinks he could try it,,,no thanks!


Debbie

[CRPStweet]

Dear TOS8 - what are these acronyms you used? BMT, GVHD, VOD? I have CRPS with whole body symptoms so one could not transplant my whole body!

[Jimking]

This may be off the subject as far as conditions---a couple of years ago my cousin Liz received stem cell treatment in Beijing, China to treat her ALS (not allowed in the states). She said after the treatment she felt better but passed away a little over a year afterwards. What is really strange is her younger brother during that 1.5 years, also caught ALS and died less than 6 months after his sisters death. I'm not sure stem cell treatment helped or not. She lived as long as the American doctor predicted regardless. I believe my cousins were contaminated as children. Their father was an officer in the military who moved the family all over the globe their entire lives, many military bases, several in 3rd world countries. Liz also served in the Army after college.

[tos8]

GVHD (Graft verses host desease) and VOD (veno occlusive disorder) BMT (Bone marrow transplant)

When you have a stems cell transplant or a BMT they wipe out your whole entire system with a very HIGH dose chemo for 2 weeks, and its to completly knock everything out of your system, so all your counts are 0. Your stuck on isolation for sevral months because you cant catch a virus or you will die. You can get an infection and die, you can get fungeses that attack one of your organs and have complications or die.

The reason they will do a BMT or stem cell transplant when you have cancer or other blood disorders after treatment has failed is because its really the only way to knock the cancer out of your body and then they hope it doesnt return after transplant.

Originally Posted by CRPStweet

Dear TOS8 - what are these acronyms you used? BMT, GVHD, VOD? I have CRPS with whole body symptoms so one could not transplant my whole body!