Hi,
I'm newly diagnosed and still in the 3-4 month window of opportunity I've read about. I have it in both arms as a result of surgery I had in December. I've been on neurontin, lyrica, lidocaine pain patch, fentanyl..nothing relieves the pain. It does go away at night though, which I find kind of odd, but am very greatful for. It only hurts at night if I move or stretch my arm a funny way.

I'm scheduled for a stellate ganglion nerve block on March 4. The Santa Monica UCLA pain clinic doesn't do ketamine infusions. If the block doesn't work I want to go right to ketamine. At SM, you first see a resident, then a physician. It's awful!! I asked the resident about Ketamine and she said, oh you're not right for that...you get hallucinations, etc. What an idiot. I didn't even bother asking the physician.

I'm willing to go into my 401K to pay for the infusions as I doubt blue Cross/Blue Shield pays for it. My question is the doctors I've googled who do ketamine all want a referral. I don't know that my pain doctor will do it.

Anyone know of any ketamine infusion doctors in LA that I could just go to without a referral? I won't live with this kind of pain.

Thanks,
Linda

Hi Linda,
Nice to meet you but sorry its under these circumstances. I go to Dr Leverone in LA for ketamine infusions. Its not a low dose or a high dose but a middle dose ( for lack of an exact dosage). It costs 2000, 1 for the doc and 1 for the hospital.

I had emailed him a couple years ago from NH asking him if he would do the infusion on me and he was quick to help and got me in there the day after i arrived in california. If you need his number, just give me a shout. He is a wonderful, kind man and one hellofa doctor.

hang in there, your still in the early stage and can beat this moster, stay positive and i'll be praying for you.

Dee

Dear Linda -

The USC Pain Center is currently trying to set up a 10-day outpatient infusion program, where each infusion would last 4 hours and entail up to 200 mg. of ketamine over that time period. However, as of a couple of weeks ago, I understood some of the details had yet to be finalized. That said, hands down, my vote for the best CRPS specialist in So Cal is my treating physician, Steven H. Richeimer, MD, Chief of Pain Medicine at USC, Director of the USC Pain Clinic and Associate Prof. of Anesthesiology and Psychiatry. He combines sheer competence with utter humility and deep compassion, something you don't see every day. I understand that it currently takes about six weeks to get a new patient appointment with him, no referral required: 323-442-6202.

Two other names you might want to check out are Sheldon Jordan, MD and Joshua Prager, MD, both of whom I understand have done work with ketamine, and in contrast to Dr. Leverone, are specialists in pain management, whereas the last time I was able to find a resume on his website, Dr. Leverone, an anesthesiologist by training, claimed subspecialty specialization only in addiction medicine.

That said, while a number of people, including myself, have found that while Dr. Prager knows his stuff, he can be difficult to work with. By example in 2002, 14 months into this, when (in his words) "my block" failed to provided any relief, he simply declared that I didn't have RSD, even though I had responded to a few block at Cedars 8 months earlier. As I understand it, the first article(s) showing that responses to blocks were time sensitive came out a year or two later, although the folks at Cedars were well aware of the profile through their own experience by the time I left in the Spring of 2002. (Word is that Dr. Prager can also be expensive.) Here's a link to his practice group, which at the present time contains no explicit reference to ketamine, which is not to say that it is unavailable as such. http://www.californiapainmedicinecenter.com/profile

And as far as Dr. Jordan is concerned, at one time he was known for the frequency with which he administered blocks. More recently, his interested have included highly focused rTMS (repetitive Transcranial Magnetic Stimulation) where the target areas are first precisely mapped in the course of an fMRI. http://www.smartbrainandhealth.com/default.asp

Drs. Prager and Jordan are in Westwood and Santa Monica, respectively.

Since you are still at the earliest stage of the disease, I would push for an in-patient infusion or a carefully considered series of daily out-patient infusions by someone credentialed in pain management. And thus far, at least looking at the articles on the RSDSA website, the 10-day outpatient protocol may have the best track record. http://www.rsds.org/2/library/articl....html#Ketamine

Mike

Linda -

In communications with a number of pain patients, who have had ketamine, both online and over the phone, I have been told that the only risk for pain actually increasing as a result of a ketamine infusion is the dose is to high, and then that can be corrected the next time around by a low ever dose, or so these patients have been advised by their physicians. Some discussion of this appears in a related thread on this page, follow-up ketamine question: can it ever make the pain worse? http://neurotalk.psychcentral.com/thread140113.html

(As I've mentioned elsewhere, although I was supposed to go to Germany for a ketamine coma in 2004, that died when the German physicians discovered that I had a history of open-angled glaucoma, where ketamine is known to raise eye pressures. That bar will hopefully be lifted as soon as USC's program is up and running - the 10 day outpatient infusions have been shown to significantly reduce pain six months out, even for patients with chronic CRPS - where an ophthalmology prof. at USC has agreed to oversee the monitoring of my eye pressures during the procedures, reversing any pressure spike with an IV dose of Diamox. Now it's just a matter of the allergists clearing me for the use of Diamox, a sulfa-derivative, where I had some fairly profound allergic reactions to sulfa drugs before getting RSD/CRPS, at which point my observable allergies vanished altogether, having possibly undergone a "T1/T2 immune shift" in the acute stage of the illness.)

The dose that is currently being used in the 10 day outpatient infusion program is 200 mg./4 hour infusion. This is the dose suggested in 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, even though the study itself limited the 4 hour dose to 100 mg.

In contrast, and for your information, the companion thread referred to above indicates that in the starting infusion given by the poster’s physician "is about 1g over the four hours." (Page 2, post 15.) But even in the “high-dose” anesthetic treatment programs that was run over a number of years in Germany, “Treatment was maintained by infusions of ketamine over 5 days, starting at 3 mg/kg/h, followed by gradual daily titration up to a final dose of 7 mg/kg/h.” Efficacy of Ketamine in Anesthetic Dosage for the Treatment of Refractory Complex Regional Pain Syndrome: An Open-Label Phase II Study, Kiefer RT, Rohr P, Ploppa A, et al, Pain Med. 2008 Nov; 9(8):1173-201, FULL ONLINE TEXT @ http://www.rsds.org/2/library/articl...a_Dietrich.pdf Now, 1 pound = 0.45359237 kilograms, that means that a 140 lb. woman weighs approx. 63.5 kg. As a result, at the high end of the anesthetic ketamine program, where patients would be receiving 7 mg/kg/h, a 140 lb. patient would be getting 444.5 mg of ketamine/hour or 1.778 grams over a 4 hour period, which indeed is what the poster reported that she was getting herself, albeit not over a 5 – day period!

In light of the issues and concerns reported in follow-up ketamine question: can it ever make the pain worse?, I would be hesitant (and then some) to start off with an infusion rate of 1 gr./4 hours.


Mike

Hi Linda,

I can't remember who it was on the list but if you are interested there is a doc in Torrance that did a couple ketamine procedures on a list member. Just let me know if you need it and I'll find the post and doc.

My guess is you're speaking of Thomas M. Leverone, MD:

3445 Pacific Coast Highway, Suite 110
Torrance, CA, 90505
(310) 325-4555
(310) 325-5005 (fax)

I'm not going to get into a my doc is better than your doc scenerio, but I am going to provide what I know about him and I am also compiling a list of questions that hopefully he'll find the time to answer.

I welcome any/all questions that anyone would like added to my email, either privately or posted.

thankyou, Dee
-----------------------------------------------------------------------

Dr. Thomas Leverone
Medical School:
University Of Minnesota Medical School
Minneapolis, MN, United States
Residency Hospital:
University Of California Los Angeles
Los Angeles, CA, USA
Year completed: 1987
Internship Hospital:
UCLA Harbor General
Torrance, CA, USA
Year completed: 1985
Fellowship Hospital:
UCLA/Cedars Sinai
Los Angeles, CA, USA
Year completed: 1988

MEMBER
AMA
ASA
CSA
LACSA

Dear Dr. Leverone,
You have helped me with my CRPS/RSD more than any other doctor I’ve seen, and you know I’ve seen quite a few. Your ketamine infusions have been a great service to those of us needing them. I am trying to help spread the word of your service and was hoping you could help by answering a few questions to ease the mind of those not familiar with you and your practice.

1. When and where did you first become aware of CRPS/RSD?


2. Are there other medical conditions that you treat? ( not counting RSD/ketamine)


3. Where is your practice located and how can patients contact you?


4. What are your thoughts on the ketamine coma done in other countries?


5. If someone is newly diagnosed, should they go straight to ketamine infusion or should they go through the long list of treatments ie blocks, stimulators, pumps, meds, etc., first?

6. As memory serves me ( and it isn’t that great lol) isn’t the dosage you give dependant on the patients severity, weight and other factors?


7. One fellow RSD’er was told that RSD does not spread, your thoughts on that?


Thank you so much for taking the time to help not only me, but for those who may decide to seek your services. You’ve been a Godsend for me and I cannot express my gratitude enough.