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.



Follow my blog with Bloglovin

i cannot forget her

Two nights in a row of bitch-slapping is excessive.  But my anger at the leg and arm choppers from last night has been reignited this evening over the renewal of a memory I'd much much rather forget.

When Andrea Gianopoulos died in Mexico after her second ketamine coma treatment, I wrote rashly about it, and I hurt and angered her family.  I cared, and their feelings and anger mattered, but so much was wrong with both the German wing (then suspended) and the Mexican wing of the ketamine coma "trials" that I cared more about getting the word out.

I just ran across another blogger's post from January 2012 that was written with the approval of Andrea's mom Leslie.  It is to be noted that the blogger, Nancy Cotterman, had her attention drawn to Andrea's death by these words of Leslie's posted at my favorite place, Facebook {shudder}:

 "My daughter died from the Ketamine coma treatment"

I don't want to reinvent the wheel, hurt the Gianopoulos family even more.  I have the same intentions to which Ms. Cotterman lays claim:

Andrea, I hope that your story will cause people to stop and think about all of the risks before they make the decision to go to a foreign country with a less sophisticated health care system than that of the US.  Again, I'm not saying that we shouldn't go.  I'm saying that we all need to do our homework and know everything that we can about the treatment, the facility, the doctor, the risks, etc. before going to have the treatment. You need to weigh the quality of life that you currently have against the potential risks of the treatments.  Ultimately it is your decision and it should be an informed decision.

Perhaps when Leslie and Gus are feeling stronger, they can join us in our fight to get all insurance companies... to cover Ketamine here in the US.  Had Andrea's insurance company covered her outpatient follow up Ketamine after her trip to Germany PERHAPS (of course there is no way to be sure) it could have held her coma treatment. If, like Jon Haag, coma treatment were available here in the US PERHAPS (again there is no way to know because people die here in the US too) coma Ketamine would be safer.  At least, we wouldn't have the expense of paying out of pocket, travel and treatment would be available to more people.  The more a procedure is done, the safer it becomes.

There's no claim on my part or anyone's that the liaison folks in Tampa or the "trial" supervisors in Mexico did anything wrong.

There's loads of evidence that it is pure nonsense to call this activity a "clinical trial" or to claim that strict protocols are being observed.  That's where the bitch-slap comes in... again.

Andrea had already had one coma treatment, in 2002.  It failed to work, one supposes, because she had no access, financially, to the booster treatments that are supposed to be so crucial to the continued success of the coma.  Huge,.freaking break in protocol, right there.

That she went on to get so much worse, I regret, and regretfully, understand.  But what continues to freaking escape me is how, after heart surgery for a bad valve -- adding a significant comorbid condition -- she flies to the top of the list again for Germany.  But those "clinical trials" having been shut down due to Laura Becket's MRSA and paralysis (which could have happened anywhere, to anyone), somehow Andrea again rose to the top of the list for Mexico.

There are doctors and administrators who have made a lot of money on this compassionate outreach, and that is why protocols matter, that is why a tragic story should not have put a young woman's life at risk, and that is, perhaps, why this needs to stop.

There is enough evidence now that ketamine helps some handpicked patients (only of Dr. Kirkpatrick? only of Dr. Schwartzman?) that the trials, properly set up, strictly supervised, and sufficiently cold-hearted to be fair in their provision of access need to be brought to the U.S.

People are told there is a two year wait to see these CRPS gurus -- and they are the disease wizards -- but if you happen to also be monied and all that goes with, my how those limits disappear, the other waiting lists for the coma trials magically shrink.

I know this is the way of the world.  I bitch-slap the world, then.

My previous writing -- very raw -- about this topic can be found HERE. But not much has changed since I banged a different keyboard back in 2009:


How dare I intrude on the death of this lovely girl? Why can't I leave it -- her -- alone, in peace? In part, it is because of the evident lack.

There is nothing but silence around this death, hardly anything beyond the barest of acknowledgements.

Or the most private of them. The nearest and the dearest. And to them, I apologize -- no, rather I beg pardon, for this prurient interest -- not in Andrea, but in what happened *to* Andrea.

The ketamine coma trials... that is what we are made to say, you know -- "the trials."

How many other legitimate "trials" cost well over $50-60,000? How many other legitimate trials cost ANYTHING? 

How many other legitimate "trials" suffer a death and allow it to pass into silence, unexplained?
There has also been a high incidence of infection, particularly respiratory -- aspiration pneumonias.

Oh, and how many "trials" make way for someone to repeat the treatment, the benefits of the first time around apparently not having lasted? How was that expressed in the data collection of the second coma? Was the first treatment before the days of the "trials"? You know, back when a person basically only had to produce the money, and be sufficiently young and healthy (beyond having CRPS)? Wait... am I getting it all confused? Because it sure seems like today's requirements are eerily... no, *exactly* the same -- young, otherwise healthy, cash in hand.

My prurient interest has its roots in anger and envy -- as well as in a more legitimate need for information that was not forthcoming from those running the programs.


I cannot forget Andrea.  I cannot forgive the shortcuts that cut her short.  I cannot believe it has been so successfully buried, the truth.

FAIL Blog

there are things that just should not be.

someone entering the following searches should not be directed to this piece-of-fluff, navel-gazing blog:

CRPS + facial pain
new wheelchair
laxative XXXporn**
andrea gianopoulos lancaster pa*
andrea gianopoulos and laura beckett, ketamine kills*
scott reuben
tennis undies
severe bras
xxxporn**
belle sex positions**
rsd/crps law suits
fear fire famine foes
crps rsds cure
amputation cures rsd
marqueterie fraud
boobs whishes
lindsey baum
mrsa and paralyzation
crps 10 pain
laura beckett*
rsd on fire
gambling your heart away near the seine
i know where lindsey baum is
wheelchair lift honda
what kind of cancer killed leslie scalapino

and the one that prompted this failed post, in this failed blog -- the one that logged in at 3:03 in the morning, some woman, some man, sitting, nursing a cup of cold, burnt coffee, elbows propped on that red formica dinette table, long in the family, forehead damp from humidity, not heat, god damn it:

doctors in sedalia missourri that takes wellcare

*Months after posting about Andrea, her father and sister wrote me, very angry. In their eyes, I defamed her and said hateful things. They were very hurt by what I wrote, and reminded me how little I actually knew about her, her life, and her death. I have left the posts untouched but want to acknowledge their deep and abiding pain at seeing her name in a silly blog maintained by a silly blogger. Good things will continue to be born through their daughter, their sister, by virtue of the work she did, and the example she set. And Laura Beckett? I wait in pregnant silence for some lecture or outburst about my rude insinuations... but the lectures and the outbursts never come, and that only seals the seams of my knowledge, that only leaves her in unresolved expectancy, that only means she gambled, and she's been punished. I hope to hear of her dancing her way out of the rehab center one day, pain free. More selfishly, I hope the ketamine coma is perfected, and proves to be a real, accessible answer.

**Okay, so I find that kind of... tittilating. La Bonne et Belle Bianca Castafiore, Fred, and The Four-Now-Three Felines cannot stop their giggles, and -- very strangely -- keep checking themselves out in the Roman mirror of blown glass coated with molten lead, that serves as a sort of night light for the passageway to The Laundry Suites. The thing dates from the first century AD and we've no idea how The Captain's family got their sticky little hands on it. Undoubtedly it involved stuff like "swashbuckling," and "booty." I still don't know how to clean it... but have watched enough Antique Roadshow to know that leaving it as is is probably the best thing. Should you know the proper cleaners to use on first century AD Roman mirrors? Leave me a note.

But I digress (because sometimes, most times, that's all I know to do).


[a slightly revamped repost]

P R U R I E N T ::: I N T E R E S T

I did not lie.

But my interest was prurient.

If I were to want a rhyme, The Oxford Dictionary of Rhymes provides me guidance:

prurient • abeyant , mayn't • ambient , circumambient • gradient , irradiant, radiant • expedient...recreant • variant • miscreant •Orient • nutrient • esurient , luxuriant, parturient, prurient • nescient , prescient •omniscient •

The meaning of "prurient interest" brings out the big guns, too, less interested in rhyming. From The Oxford Companion to the Supreme Court of the United States (2005):

Miller v. California, 413 U.S. 15 (1973), argued 18–19 Jan. and 7 Nov. 1972; PARIS ADULT THEATRE v. SLATON, 413 U.S. 49 (1973), argued 19 Oct. 1972, both decided 21 June 1973 by vote of 5 to 4; Burger for the Court, Douglas, Brennan, Stewart, and Marshall in dissent. Miller v. California articulates the test for obscenity that resolved the dilemma of First Amendment protection for allegedly obscene materials first identified in Roth v. United States (1957). Chief Justice Warren Burger's majority opinion stated that material could be obscene only if “(a) the average person, applying contemporary community standards, would find that the work, taken as a whole, appeals to the prurient interest; [and] (b) the work depicts or describes, in a patently offensive way, sexual conduct specifically defined by the applicable state law; and (c) the work, taken as a whole, lacks serious literary, artistic, political, or scientific value” (p. 25).

I did not lie. I did not tell the truth. My interest was prurient. And I don't want to make a poem with "prurient" as my major rhyming scheme.

Okay, I will tell *you* the truth.

On March 16, I sent the following email:

hello,

you don't know me -- i just saw the message you left on andrea's myspace page. i have crps, too, and had just discovered her fighting4us site when she died down in mexico. you surely don't have to answer this, and perhaps you don't even know yourself -- but what happened? i have been looking into the ketamine coma treatment -- but now that someone has died in connection with it, i don't know anymore.
can you shed any light on whether or not it was the treatment that harmed her or was this just CRPS/RSD doing its dirty work?

sincerely,
the retired educator

How dare I intrude on the death of this lovely girl? Why can't I leave it -- her -- alone, in peace? In part, it is because of the evident lack.

There is nothing but silence around this death, hardly anything beyond the barest of acknowledgements.

Or the most private of them. The nearest and the dearest. And to them, I apologize -- no, rather I beg pardon, for this prurient interest -- not in Andrea, but in what happened *to* Andrea.

The ketamine coma trials... that is what we are made to say, you know -- "the trials."

How many other legitimate "trials" cost well over $50-60,000? How many other legitimate trials cost ANYTHING?

How many other legitimate "trials" suffer a death and allow it to pass into silence, unexplained?
There has also been a high incidence of infection, particularly respiratory -- aspiration pneumonias.

Oh, and how many "trials" make way for someone to repeat the treatment, the benefits of the first time around apparently not having lasted? How was that expressed in the data collection of the second coma? Was the first treatment before the days of the "trials"? You know, back when a person basically only had to produce the money, and be sufficiently young and healthy (beyond having CRPS)? Wait... am I getting it all confused? Because it sure seems like today's requirements are eerily... no, *exactly* the same -- young, otherwise healthy, cash in hand.

My prurient interest has its roots in anger and envy -- as well as in a more legitimate need for information that was not forthcoming from those running the programs. Andrea was getting a second shot at curing or, at least, pushing into remission, her CRPS -- and at a point in time where there is a 2-year waiting list.

Anyway.

I read everything that Andrea ever published on the internet concerning CRPS. She was dedicated but had bought into the demonization of the disease -- it was an actual evil entity to her. This happens in people with CRPS -- because of deleterious effects to the limbic system of the brain? Because of simple human frustration? What can you trust when your own body systems do nothing but lie to you? She cared, and was ferocious in her caring. And she was naive. Childlike.

Her friend wrote me back just this morning.

hi, sorry it took me some time to get back to u ,, i dont check this email offten,.. ok what happend with her was,, from birth she had a bad heart, when she was younger she had surgery to fix it, but with any heart problem eovn if u fix the prob u still have to watch it,, this was her second time getting the ketamine comma treatment done... the first time was great, no probs or issues,,, this last time though, after menay years of fighting, she was 12 when she got the rsd, and died at the age of 24/25 , and all those years of fighgting and medications and the rsd itself, her heart jsut couldnt handle any more and gave out on her... so it wasnt exsactly the ketamine that killed her, it was a combo of evry thing and honestly we all belive evon if she hadnt done the ketamine, she would have died shortly ,,, most people dont realize 1, cause its sugar coated and not spoke about much, 2 doc really dont have any clue when it comes to rsd, unless u haev one that specializes in it, 3 alot of people dont want to belive it and rather live in denighel... rsd can and for the most part the longer u have had it for the more likely it is to happen... effect your internal organs. ive had my rsd for about 3 years now.,.. and its effecting my heart. ive seen the same doc she was seeing.. and he jsut said i haev very agressive and advanced rsd.. and that most likely the ketamine coma wouldnt work for me, but dosnt mean i shouldnt at lest try it.. i have 2 other friends who have done the ketamine infussions. 1 it did nothing for the other it did help almost 90% at getting ride of the pain.. but about 9 months later shes back to as if she never had the infussion... pls dont let the idea of death scare u away form any ketamine treatment...
jsut like the meds we take evryday to help treat our rsd. theres no garentee ur not gonna die form it.. jsut like rsd itself,. in the end it attacts ur own immune system form it and at that point well, its up to u and god... so pls dont let a death scare u/.. rsd isnt easy its scary and not fair and evry miss understood.. the ketamine treatments should not be taken lightly, but nore ignored becuse there have been a problem here or there. rember there were other outside sercomstance that played a role in her dying...
what i tell people who are wanting to do the ketamine treatments but are scared is
u have to stop and ask urself. r u to the point of death as far as taking ur own life in your hands, becuse u have tried evrything ealse possible and nothing has worked, and the ketamine treatments r the last thing, u have left to try.. and if ur answer is yes.. well then u have to make peace with the idea that, this may help it may not, its not 100% safe, but yet u could get hit by a car infornt of ur house in the moring.. also.. if ur about to take ur life becuse the pain is that bad and nothing has worked, really what other option do u have.. than trying ketamine treatments and hopeing for the best, knowing theres a possible risk, or jsut saying nope im giveign up not doing anything more, go into a big depression and kill ur self

2, if u have answerd no to the question., dont do the ketamine treatments, 1 there not coverd by insurance, cost a lot of money, its like a last resuslt thing. evon though it has had the best results, its still a last result. do each and evry other treatment recomende for rsd first evon more than once before trying the ketamine,, sometheing less shocking to the system is always best.. when u have done all the treatments and nothings worked, then that is when u go for the ketamine treatments,,,
i hope this has been helpfull, i dont know how long u have had ur rsd, were it is and how old u are,,, along with what u have tryed and havent for treatments, ive in a way become like a master at knowing rsd and what it dose and and wht can be fdone for it, seeing as my rsd in only almost 3 years is now infected over 50% of my body.. ( liek doc says i have very agressive rsd, apprently its more rare thann rsd, i dont know i jsut know its bad and suckslol) maybe i may beable to help u, with advice things to try, or simply just some one to talk too


this last time though, after menay years of fighting, she was 12 when she got the rsd, and died at the age of 24/25 , and all those years of fighgting and medications and the rsd itself, her heart jsut couldnt handle any more and gave out on her... so it wasnt exsactly the ketamine that killed her

Mercy. Oh, mercy me.

I wrote and thanked her, my prurient interest gone absolutely cold dead.

Andrea Gianopoulos

There seems to be a theme to these final days of February: Things that should not happen, that are not in the proper order of things -- things that weren't covered even in the small print of the contract.

Tony Tobin of the U.K. runs a Yahoo! health group that is information only about CRPS/RSD. He waxes and wanes as to when and what he posts. January saw only one message -- but February has been a flurry of activity. He doesn't judge the material he passes on although it is evident that most of it has passed through his savvy intellectual filters. He does not have CRPS/RSD but watched and learned and then became a virtual sponge for knowledge after his granddaughter was "afflicted."

So that's Tony.

He knows, it sometimes seems, everyone in the CRPS/RSD "community." He posted his 17th message this month about one of those people.

It is with deepest regret and great sorrow that I post this obituary. I have known Andrea and her family for many years and I am finding it hard to find words to express my feelings. So for now please just accept her obituary as my way of saying 'God be with you.'
Tony

Cutting through the blither-blather, here is the part that matters:

Andrea Lynn Gianopoulos

Andrea Lynn Gianopoulos, 26, of Lancaster, died unexpectedly on Wednesday, February 11, 2009 at Hospital San Jose in Monterrey, Mexico.

Andrea also moderated a Yahoo! health group, fighting fire with fire (and founded one other, of which, I think, she was the most proud --Fighting 4 Us ). In February 2008, she wrote a welcoming note:

Hey everyone out there in RSD land! I wanted to sent out the first
email of this group to get things going. I know there aren't a lot of
people in this group as of yet, but I want you guys to know that you
can invite ANYONE you want! The more people who know, talk about, and
read information on RSD, the better. So get talking people! Advice,
jokes, interesting news, WHATEVER! The more emails the better too!
Alright I'm going to get going but I will be here as your happy
moderator, ready to answer any questions or concerns. Till next time,
keep on Fighting!

Your happy moderator

Andrea

I am not proud of it but groups like this one are as fingernails scratching on the blackboard. In general, I believe that people in the kind of diminishing-to-the-self constant pain that folks with CRPS/RSD live with should not gather in groups greater than three, and probably should be supervised. Ankle bracelets. Muzzles.

Nothing good can come of the congregation of either drugged out Pollyannas who believe in silver bullet cures (One day, they'll find the cure for this Beast, this Monster! Fight on! Rah! Buy a bracelet! Use Epsom Salts to draw out the poison! HBOT! Sign a petition! Use lots of exclamation points and emoticons!) or bitter bitter sufferers who are not yet resigned to their intractable pain. They curse a lot, threaten suicide, and emotionally blackmail everyone in the group. Eventually.

It's sad and I see it happening in almost all CRPS/RSD support groups. This may be silly, but I have some tonal and linguistic red flags to which I try to pay attention: "scripts" instead of prescriptions, "perks" instead of percocet, spread of the urban legends about the purportedly high suicide rate among "RSDers" (many doctors contribute to the myth, unfortunately, including one of the foremost experts on the disease, also the balletic and oft interviewed doyenne, Cynthia Toussaint, now predictably stricken with fibromyalgia.).

Choo choo! Toot toot tooot! Derailed train of thought, once again.

I, The Retired Educator, do hereby lay claim to the Fog of Anesthesia, in the name of Isabella and Ferdinand, Catholic Monarchs of a united Spain...

Another of Andrea's final posts is so typical of the harried sense of anxiety that chronic pain creates, as the days' sufferings accrete and fold, fold, fold over and into themselves, like air into a delicate batter. What? I can't help it... the Food Network is on.

She sounds like such a sweet young lady, determined to help anyone she can, but a bit lost, too. Her train of thought is about as clear and straightforward as mine. Her expressive style reminds me of a recent blog post by the Doc at Ten out of Ten, wherein he classifies patients by their communication acumen. Thus far, he has exaggerators, ill-depicters, stoic [doods], vagueurs, wanderers, hystericals, no/buts, and the positive-review-of-symptoms.

Choooo! Andrea paid no attention to the perils of internet overinvolvement -- perhaps she had never been burned or taken under the bridge and beaten by trolls; Could it really be that she was just unwaveringly good, unspoiled, a true optimist?

Hey everyone,

Yesturday, I got a message from a man who really wants our help. I
will not tell you his name, but I will tell you that his girl friend
is really...REALLY bad off. In the first email he just sounded
angry, and said that the local group he belong to didn't help. At
first I thought he was saying he was in pain and it was my group
that didn't help him. I sent him a rather abrasive email reminding
him that if they were saying it was my local group, that I needed to
know who was taking the name of Fighting "4" Us and just using it to
their benifit.

Well he emailed me back. He told me that it wasn't my local group,
but that it wasn't good for her. He said this was for his girl
friend and he was just trying to find help. He said her PCP has
dropped her, and for some reason her doctor won't perscribe more
scripts. She has thirty days till the script runs out and you all
know what that means. She's going to go through major withdrawl, and
is already talking about suicide. I can't tell you the man or the
woman's name, but can you all do me this: remind me where your from?
If you're close to their area maybe I can get them to talk to you.

I suggested that she join this group, but that was in an email I
just sent so I don't kow if it will help. Just tell me where you
live and I'll see what I can do. Because we want to help our fellow
RSDers...right? Thanks all and I hope to hear from you soon...

Your always fighting moderator,

Andrea

Do you remember her obituary, way up above this word mess? Do you remember where she died? Yes, that's right. At San José Hospital Technological of Monterrey, Monterrey, México.

The research being conducted on the ketamine coma is taking place primarily in two places: at the San José Hospital in Monterrey, and Saarbrueken, Germany. Recently there was a mild uproar over a patient septic from MRSA (began as a pneumonia, which is pretty common in the treatment, but -- being MRSA -- didn't respond to antibiotics, then went systemic) -- that was at the German site.

Now we have this in Monterrey.

I'm just sayin'.

Because of the infections I have developed over the past year and a half, I had to drop the notion of either getting an SCS or a "pain" pump (intrathecal pump) or going for the gold and attempting to get on the ketamine coma waiting list (word is that it is a 2-year wait at present). Now, of course, I see horror-stricken faces when I broach the topic to my doctors -- the very idea that I would want to introduce more foreign bodies that might invite bacterial colonisation appalls them.

And my rumblings about the coma? They never really took me seriously. The sepsis of one patient and the death of another may be the death knell for this research.

And I don't know how I feel about that. It has been touted as a possible cure, and I believe 14+ people have gone into longterm remission. Here's a short blurb about it that I pulled from the informed consent paperwork for folks considering hopping on an air ambulance and flying off to Mexico:

The purpose of this research is to find out if an anesthetic called Ketamine
helps in the treatment of the Complex Regional Pain Syndrome (CRPS)...

If you agree to be part of this study, you will be given two drugs: Ketamine and
Midazolam that will put you to sleep. You will be asleep during five days by
means of continuous infusions (a quantity will be given continuously but slowly)
of these drugs. At the end of the five days the drugs will be stopped and you
will wake up. After the treatment you will take several tests to see if the
treatment worked completely, partially, or not at all. You will have more tests
every certain number of months during two years in order to observe how long the
effects of the treatment last.

On January 18, 2009, Andrea wrote in her MySpace blog:
Well as many of you all know by now I will not be going to Germany in February, but I am going to be going to Mexico! I will write in here and at the Fighting "4" Us myspace site (www.fighting4us.com) about it as much as I can, and I should have wrote in this more, but there was so many feelings, so many things that had to be done, so many things to think about that I just didn't have the time or energy to come online and work through this. I was working on Fighting "4" Us stuff, however, but more behind the scenes then anyhing else. But OH how wonderful our site will be when I get back. There will be places for members to come on, it will have it's own blog....But that's just a preview of all the good things that will happen. But for now, some thoughts on going to Mexico. When I first found out that I would be going to Mexico, and when, I was overjoyed. I'm still overjoyed....but now the fear has set in. I have so many things I want to be and do...I have an entire list of them. I'd rather not take up so much room now, but when I start to check them off (and I will) you will hear about it. I'm just "a ball of nervous" as someone I know said. I guess that's all I have right now. Blessed be!

Someone has posted a banner on her MySpace page that reads: "Andrea doesn't hurt anymore."

Bless her heart.