Friday, April 25, 2014

List of Doctors/Organizations Providing Ketamine Treatments for CRPS / RSD

This list was current as of April 2011, when it was originally published. Please help me update it by leaving a message detailing new clinics, hospitals, and doctors who are providing subanesthetic Ketamine treatments for CRPS / RSD -- also let me know, s'il vous plaît, about any errors in the current listing.  Thank you, Sweet Readers!


Doctors/Institutions Providing (Subanesthetic) Ketamine Treatment for CRPS / RSD
STATE   CITY   DOCTOR   ORGANIZATION   PHONE   WEBSITE/EMAIL

CA Los Angeles Thomas Leverone 310-209-6500 ketaminetherapy@gmail.com
CA Los Angeles Joshua Prager Center for Pain Rehabilitation 310-264-7246 paindoc@ucla.edu
CA Los Angeles Linda Rever USC Pain Center 323-442-6202 rever@usc.edu
CA La Jolla Nancy Sajben Scripps Memorial 858-622-0500 oral Ketamine
CA Santa Anna Lawrence Miller 1450 17th St, STE 200 714-953-6000
CA San Francisco SF Kaiser 415-833-0095
CO Univ. of CO Alan Brewer 720-848-1970
DC Dr. Chin Geo. Washington Hosp. 202-715-4599
FL Hollywood Dr. Kaufmann Joe DiMaggio Children's Hospital 954 360 6383
FL Sarasota Doanld Erb, DO Institute for Advanced Medicine 941-917-5111
FL Tampa Anthony Kirkpatrick 813-435-8206 www.rsdhealthcare.org
GA Atlanta Erik Shaw, D.O. Shepard Pain Institute http://www.shepherd.org
IA Des Moines Steven Quam,DO Metro Anesthesia and Pain Management 515-221-9222
IL Palos Park Renata Variakojis 708-631-5550
IL Chicago Timothy Lubinow Rush Univ. Med Cntr 312-942-6631
IL Rockford Medical Pain Mang. Serv 815-397-8400
KY Louisville Christopher Nelson Bluegrass Pain Cons. 502-423-1021
Kas Leawood Dr. Simon Mid-America Physiatrists 913-599-2440
MA Boston Arnold Pain Center 617-278-8000
MA Boston Christine Peeters-Asdouria Beth Israel 317-278-8000
MS Jackson Kenneth Oswalt University Pain Management 601-984-5950
NC Winston-Salem James North Carolina Pain Institute 336-765-6181
NE Hastings Mark Brosnihan/John Dungan Manny Lanning Mem. Hosp. 402-463-4521
NJ Marlton Philip Getson 856-983-7246
NJ Morristown Edward Zampella Atlantic Neurosurgical Specialists 973-285-7800
NJ Camden Pain Management 856-983-7246
NV Carson City John Di Murro 775-841-4057
NY NYC Vadim Kushnerik Downtown Hospital 212-312-5247
NY Dr. Durkin 631-638-0800
NY NYC Seth Waldman Hosp. for Special Surgery 212-606-1015
NY/DC/VA Nameer R. Haider, MD see website www.killpain.com
NY NYC Ron Hertz Roosevelt Hosp. 212-523-6357
NY Syosset Northshore Hosp. 516-496-6506
NY Stony Brook Brian Durkin, DO Stony Brook Hospital 631-638-0800
OH Mayfield Hgts. Teresa Dews Hillcrest Hosp 440-312-8599
OH Centerville Amol Soin, MD Ohio Pain Clinic 937-434-2226
OK OK City Jack Marshall 405-775-9355
PA Bryn Mawr Matthew Kline Center for Pain 610-527-9500
RI Pawtucket Pradeep Chopra, MD Interventional Pain Mang, Ctr 401-7294985
TX Houston Everton Edmondson Interventional Neurology 713-797-1180
TX San Antonio Kaleb Shaw, MD Univ. of Texas, San Antonio 210-450-9850
UT Salt Lake City Andrew Tallbutt Life Tree Pain Clinic 801-261-4988
WY Casper Tuenis Zondag Neuroscience Center 307-265-7246
WA Yakima Waters Edge Pain Relief Institute 509-574-3805
New Zealand Aukland Greenlane Hospital (09) 638-9909

4/25/2014 addendum:  Please remember that the textual stuff below was painstakingly typed wayyy back in April 2011, hence some oddity.  For instance, Dr. Schwartzman has [alas!] retired...

*I cannot vouch for what you'll discover upon contacting the individual doctors and institutions listed above.  I can verify that this list is NOT complete -- for which we should all be more than a little bit grateful!  I say that because I know of several exclusions from my area -- exclusions that are completely warranted by the less than impressive approach being taken by those excluded!  For instance?  Well... the local doctor whose approach to the ketamine infusion is to LEASE an infusion machine to the patient, toss in an i.v. or PICC line, and send the patient home with bags of ketamine... That's right, you can do your ketamine treatments in the privacy of your own bedroom!  Oh, and the cost is as attractive as the "protocol" -- beyond the insertion of a line and the leasing of a pump -- it's...
FIFTY DOLLARS. 

Personally, by excluding that particular physician from this list, the list maker proved his bona fides!

You'll note some more obvious things, like the absence of Dr. Schwartzman of Philadelphia (Neurology Chair at Drexel). I can think of numerous reasons why that might be so, first and foremost that he has more patients and potential patients than your average bear, and second, that he may wear more the mantle of researcher and academic at this point. Mostly, though, I don't know. He is easy enough to find, as are the details of his protocol.

A word about the Schwartzman protocol: It is a research protocol, and therefore is not subject to any adjustment. The results need to proceed from a process that is double-blind and placebo controlled -- reproducible, ethical, heavily monitored and so on.

Uh-oh.  I feel a sensation of mounting bile.  Perhaps a moderate rant...
I am fed up with the CRPS / RSD patient culture -- online, at least. I should not have strayed from my neurologist's longstanding advice not to join online CRPS/RSD "support" groups. A few weeks ago, I found a group fairly experienced with ketamine, joined, shared my "story" (de rigueur), but mentioned prominently, and twice, that I did not wish to debate ketamine protocols, as I am in the position of using what is available to me. That I am unable to swoop into Philly on a private ambulance plane, "Dr. S" having dropped whatever insignificant thing he was doing to meet and escort me around his facility, does not mean that I am not invested in getting well. That I am no longer pursuing inclusion in the "coma" treatment studies does not mean that my efforts to beat "the monster" are either half-assed or half-hearted. (I am pretty sure, as are others, that it would kill me.)

Yes, despite declaring the ketamine protocol debate off limits -- that's all most people came back at me with... Not to say that there weren't any who attentively read my post and responded thoughtfully and with a clear intent of being... you know, *supportive* -- there were. Two. Two people. One is about as frazzled as I am, and we are enjoying behind the scene banter. It's a case of instant recognition of one's self in the other -- I'm very comfortable with her.

And it occurs to me that I pulled on her exactly that with which I am charging the Protocol Protectorate!  The difference was time and place -- we had at least perfunctorily "met," and we were communicating privately. She wanted to pursue a treatment for whom the only known advocate is a very shady doctor (*cough* *sniff* dr. H *achoo* in Florida *sneeze*), now retired but still in the business via an equally shady website and -- I innocently and unknowingly surmise -- some longstanding system of kickbacks. If folks will do just a bit of due diligence, they'll discover that *cough* *sniff* dr. H *achoo* in Florida *sneeze* did time for Medicare fraud. In a different state, a bit more to the north. Starts with a V.

So I spoke up and posed some rhetorical doubt.

It turned out that, in the interim of our communications, she had stumbled on some less than savory details on her own. She was doing what needed doing and I felt relieved. God only knows how many desperate people have fallen through the cracks, lost to these assholes armed with medical licenses.

But I have been through this process -- constant guarding against people with no aim other than fleecing patients so desperate for relief that they will believe the most amazing crap -- and it is tedious. Mind- and heart- numbing.

What did I expect from the group? What help could they realistically have been?

I wanted to know what, if anything, I could do to optimize the benefits of my treatments. There was only one clear response and it was buried in a bunch of condescending advice for the neophyte, and full of "Dr. S" this, and "Dr. S" that... In order to participate in his studies, Dr. Schwartzman requires that patients be off most meds, and all opiates. That makes sense to me... but mostly, it makes sense in his intensive research protocol.

Crud. Let me chat about something else for a moment. I am not completely sure of this -- I saw a video by Dr. Prager of L.A. from about a year ago in which he said the German arm of the coma studies had been shut down. That makes me sad even though I understand the forces at work.

It has to do with what happened to Laura Beckett, I believe, and while her situation is tragic, I don't see how "blame" can realistically be assigned or why the study had to be punished as a result. MRSA is everywhere, and I have some experience with contracting it, even in an ICU environment where standards are high. It strikes me as odd, as well, that the work in Mexico continues unabated with barely even a mention of the patient death that occurred there.  The implication in Prager's video is that her inclusion was on a compassionate-use basis, not as part of the research cohort.

It's a darned good thing that I recognize the dangers of knowing-a-little-but-not-much. What would be even better? If I could find more medical professionals to trust, with whom to share the burden of worry. I have a group of trusted doctors but none of them are, or will ever be, CRPS experts. When you have an orphan disease that is not at all sexy in its promise for monetary reward, you also have a disease that doesn't/cannot interest many mainstream treating professionals or fire up research consortia (Big Pharma) with burning passion. CRPS just doesn't have that special cachet that comes from infusions, not of ketamine, but of cash.

On the occasions when I pray, it is almost always in the form of intercessionary prayers -- perhaps the prayer of the pompous, definitely the prayer of the dilettante.

Self-interest is never absent, never far from my lips.

I pray for my local, real, available, and wonderful doctors and nurses. But I also pray for Dr. Schwartzman, Dr. Kirkpatrick, Dr. Prager. I pray for Laura Beckett and for the family and friends of Andrea Gianopoulos. They each own, somehow, a little bit of my wayward soul by virtue of their bravery and by the evidence of their faith. 

It's a rough weekend. I hit a pain cycle starting -- roughly -- Wednesday morning. If you noted my previous erudite discussion of the term and concept of "flare," let me say that I seem to be in the midst of shifting pain types, not just some sort of eastern purification of the pain -- *snort*! Some of it may be due to Buddy the Kitten's claws but I don't see that I can blame it all on the Wee One. Ask me again in a few days.

My anxiety levels hit their peak around 4 am last night. All I seem able to think of is how Monday's ketamine treatment is likely to be my last.



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5 comments:

  1. Just wanted to thank you for providing this list and your thoughts on the ketamine infusion for CRPS/RSD. I'll have to try and look around your blog to see how it went for you.

    Gratefully,
    Sarah

    ReplyDelete
  2. sarah, a thousand pardons! i did not see your comment until just now. ketamine has been effective for lots of people -- just be sure to thoroughly investigate the doctor/clinic. i hope you're having a good day...

    ReplyDelete
  3. I just wanted to send a million thanks for the wonderful list and information!

    ReplyDelete
  4. I am very glad to hear that you got your Supra fixed. I remember reading about some of your problems.
    orthopaedic clinic morristown

    ReplyDelete
  5. IA Des Moines Steven Quam,DO Metro Anesthesia and Pain Management 515-221-9222
    He does not do Ketamine anymore. Their office told me it was a one-time treatment.

    ReplyDelete

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