Hi Brittany,
Thanks for all the honest information. I did check on line and I there was a video on there that showed how it is done. I am taking notes from all the great people who have given me info on this site. At least now I feel like I will be prepared when I go to my next neurologis treatment.
Hope you are having a good day
Hopeful

Thanks everyone for all the info about the ketamine infusions.

While I would love to do it because at this point I am willing to try anything and everything, since I have a worker's comp case, I don't know if a) they will pay for me to see Dr. S at Drexel, or b) if they will pay for the infusions themselves. They have fought paying for even the nerve blocks, so I can't bank on them paying for this- they have played down right dirty, and I really hope God calls them on it when the time of reckoning comes.

If they don't agree to pay, it will be another fight at the court level that will take months upon months, maybe even years, and I just don't know if I have the strength to fight them anymore. I have a lawyer, but I am not too happy with him and how he has worked my case. While I would love to get another, most WC lawyers in Delaware require a retainer fee, plus all the money to fight the case up front, and I don't have $5k plus $10k plus and on and on to hire a new lawyer.

I just, well, I just don't know what to do. We have tried everything, and I don't know which road to go down anymore. If anyone has any other suggestions on what to do, please, let me know- I just don't have the energy to fight this much longer.

Brittany,
Hang in there and don't stop fighting. That their motive for being so nasty. They hope people will just give up and go away. Try not to let them win. I'll keep you in my prayers.
hopeful

Brittany,

Do you have private insurance? Many times if I was rejected for a procedure by WC I would use my United Health and then the charges were reversed later. I always made sure that I took care of myself first.

And if the relationship with the lawyer doesn't feel right, trust your instincts. It may not take as much energy to shop around as you expect. Give it a shot at least. I'm sorry that the laws in Delaware are so unfriendly to victims. How many attorneys have you spoken to? Maybe your attorney is misleading you about bad the situation really is (at least I hope he is).

Please take care and don't ever give up. XOXOX Sandy

Hi Brittany and Welcome to Neurotalk,
I'm so sorry you and your fiance have the swine flue. I'm getting tested tomorrow-had chest infection for long long time. But I know a poor immune system goes with RSD.
Sorry I don't know about ketamine, only that the trial study was done here at the Mayo in Scottsdale. A friend of mine was their assistant. I always wondered since they did the trial, why didn't they proceed in offering the treatment to patients? We live just a couple miles from it, maybe I'll check that out.
My Dr. just built and opened two clinics here in AZ. He has a HBOT in each of the clinics and having success in the HBOT treatment. I've saving to undergo the treatment. My Dr. is a neurologist, psychiatrist and pharmacologist. I've been seeing him for 5 years. As soon as I can affort it, I'm going for the HBOT.
Wish you well in getting treatment. I was 31 when my only daughter was born. From my heart, I hope you can have your baby. Others on here, have said their rsd went away when they were pregnant, then came back.
Take care, loretta soft hugs

my first infusion lasted 6 weeks. my second one lasted 5 months. i'm getting ready to schedule a 3rd.

i went in for 4 hours, and was knocked out the whole time. no breathing tube needed tho. i was out of it for the rest of the day/night. with my first infusion once i was coherant i had no side affects. i was given ketamine pills to take twice a day along with ativan to take at night to prevent hallucinations. because i was already taking ketamine for over 2 years i had a tolerance built up and during the infusion was still semi awake and able to hold a conversation. which had never happened with any of my doc's patients before. so for the second infusion he doubled the dose. at first i was not given the ativan because i didn't have any hallucinations with the first one. but my first night after the infusion i had constant music playing in my head- thought there was a radio on somewhere.... and there were hellicopters going all night and i thought i was like in war zone or something cause of it. so the next day i had my doc call in ativan to pick up when i got home from la (6 hour drive). once i got those i had no more side affects. both times my pain completely went away, along with all other symptoms. once in a while my hand would shake some but definately not as bad as it had been. i was also able to completely get off all my meds. right away.

i would definately recommend it! i gained back so much of my freedom and independence because of it. not to mention a normal life again. there is not guarentee tho that everyone will go into remission. but he has a very high success rate, and even if a full remission isn't gained there seems to always be a decrease in pain levels.

he does not take insurance for the infusion. and depending on what ur able to afford he has various treatment options- a single 4 hour infusion, or coming in for 3 of them- with a day in between each one, or coming in for like 7 or 10 of them- again with a day in between each. each infusion he charges $2k. and you can always try to submit it to your insurance afterwards and see if they'll reimburse you.

Well this question is going to sound stupid but I thought you had to leave the country (USA) and go to Europe to get Katemine treatment because it wasn't allowed in the states, is that not true? I apologize for sounding ignorant but I have had CRPS type II for so long (8 years) and gave up on anything working because in 2002 I tried everything that was legally allowed and settled on the pain pump implant. In 2003 I saw a doctor on TV that had a patient with rsd that he put in a medically induced comma and proceeded with ketamine therapy and it worked. The patient was in remission and was feeling normal. I was so excited until I find out the fda wouldn't allow it in the states.
You also have to understand that back then there wasn't any forums to talk in about this stuff in (I know because I looked everywhere) and not very many informative websites either. I gave up looking for many years and recently I had a very bad flare up that caused me to look on the internet for help because I felt I have burdened my family enough with my complaints of pain etc. That is when I found this site (a week ago). Anyway, please forgive me for being out of the loop.

Hi - and welcome. Sorry you are having a bad flare.

I just read your "disability" post to my husband - thanks for such great information, it was very well written. Definitely something that might be applicable to me if I fall with the 30% of patients that doesn't get pain relief from the ketamine infusions... but I am trying to stay positive right now!

The ketamine coma is done in Mexico (Dr. Kirkpatrick from Tampa) and used to be done in Germany (Dr. Schwartzman from Drexel in Philly). That is when really high doses of ketamine are given to RSDers such that a coma is induced. The Germany site has been closed for a while because of a serious complication with one of their patients involving the "Mersa" bacteria. The ketamine coma remains the most effective way to relieve the pain of RSD, in the opinion of my new doctor in NYC.

The ketamine infusions are done in about 20 locations in the US and have an effectiveness rate of about 70%. The ketamine is infused at a much lower dose than the coma. A list of where the infusions are available can be obtained from Jim Broatch at the RSDSA (go to RSDSA.org) or on FB at Ketamine Klub. Or send me a private message and I'd be happy to mail you a copy. I got the list from Jim Broatch and called a number of locations closest to Rhode Island that provided the infusions and made appointments where I could. After an extremely painful rejection at the Beth Israel hospital in Boston on June 1st (after which I flared for a long time), I was finally accepted just last week, 4 months later, into New York City's St. Luke's/Roosevelt Hospital. It will be another 3 months or so before I can get in because I am worker's comp - my attorney will need to take this matter to a judge because the insurance company has already denied the expense. In addition, I need psych and cardiac clearance.

Take care, and please let me know if you have any other questions.

Sandy

Hi. The insurance situation for ketamine may be on it's way to getting better.

On September 22nd, PAIN the most important journal in the field, anywhere in the world, electronically published a forthcoming article: 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 Sep 22. [Epub ahead of print] a full free text copy of which is now available on the RSDSA Medical Article Achieve page at http://www.rsds.org/2/library/articl...n_Pain2009.pdf The abstract follows:

Complex regional pain syndrome (CRPS) is a severe chronic pain condition that most often develops following trauma. The pathophysiology of CRPS is not known but both clinical and experimental evidence demonstrate the important of the NMDA receptor and glial activation in its induction and maintenance. Ketamine is the most potent clinically available safe NMDA antagonist that has a well established role in the treatment of acute and chronic pain. This randomized double-blind placebo controlled trial was designed to evaluate the effectiveness of intravenous ketamine in the treatment of CRPS. Before treatment, after informed consent was obtained, each subject was randomized into a ketamine or a placebo infusion group. Study subjects were evaluated for at least 2 weeks prior to treatment and for 3months following treatment. All subjects were infused intravenously with normal saline with or without ketamine for 4h (25ml/h) daily for 10days. The maximum ketamine infusion rate was 0.35mg/kg/h, not to exceed 25mg/h over a 4h period. Subjects in both the ketamine and placebo groups were administered clonidine and versed. This study showed that intravenous ketamine administered in an outpatient setting resulted in statistically significant (p<0.05) reductions in many pain parameters. It also showed that subjects in our placebo group demonstrated no treatment effect in any parameter. The results of this study warrant a larger randomized placebo controlled trial using higher doses of ketamine and a longer follow-up period.

PMID: 19783371 [PubMed - as supplied by publisher]

http://www.ncbi.nlm.nih.gov/pubmed/1...ubmed_RVDocSum

While it's a small study, finishing up with only 19 participants, its importance cannot be overstated. First, by giving Clonidine and Versed (Midazolam) to all participants, whether they were receiving ketamine or in the control group, were, in the words of the conclusion, "positive placebos" that effected "blinding" on the part of all participants. This it becomes, unbelievably, the first double blinded placebo controlled study of intravenous ketamine in the treatment of CRPS. Granted, one of acknowledged the limitations of the study was its small size, but the robust nature of the results may be enough to secure NIH grants for larger studies. Studies from which WC carriers will hopefully find no escape.

Most surprisingly, the results of the study were obtained from a population of CRPS patients who had been ill for at least six months, and some much longer:

There were no significant differences between those patients with a shorter duration of CRPS (11 patients with an average length of illness of 2.6 years and a range of 0.8–4.2 years) and longstanding patients (8 patients with an average length of illness of 12.2 years and a range of 6.8–20 years).

Although perhaps at the behest of the reviewers this result is qualified in the conclusion, it should be noted how this is seemingly at variance with a small study undertaken by his German colleagues on which Dr. Schwartzman was listed as the senior author, and in particular the lengthy discussion section at the end of the article. Kiefer RT, Rohr P, Ploppa A, et al, A Pilot Open-Label Study of the Efficacy of Subanesthetic Isometric S(+)-Ketamine in Refractory CRPS Patients, Pain Med. 2008;9(1):44-54 (among 4 female patients with mean duration of CRPS of 58 ± 20 months, subanesthetic S(+)- ketamine showed no reduction of pain and effected no change in thermo- and mechanical detection or pain thresholds), full text at http://www.rsds.org/2/library/articl...ohr_Ploppa.pdf

My only disappointment in the new article is that the study design carried over an exclusion criteria for glaucoma from the coma treatments, which made sense in that context where one's eyes apparently "bug out" during the coma, and the doctors feel that they have no means for controlling eye pressures during that time, but it's hard to see how the same rationale applies to sub-anesthetic out-patient infusions. (An issue that forever grabbed my attention where I had already purchased - on the last day anything other than full-fare coach prices were available - non-refundable tickets to Germany, before being definitively advised that the exclusion applied even to well controlled "open angle" glaucoma: I can still recall where exactly my wife and I were in our old bedroom as the email came through from Terry Paylor, following her receipt of an email from Saarbrücken.) But enough of that.

The new article is wonderful and the study design is tight. It looks as though all of Dr. Schwartzman's years of toil in the ketamine vineyards may be on the verge of bearing fruit in the manner in which CRPS patients can be treated across North America.

Mike

Mike,
Everyone has been alluding to this long-awaited research and the ensuing article, and here it is! We re so fortuante to have this preview and to have it so expertly interpretated..
This can be the overture to some promising and long-awaited hope for all of us, even those who are unwilling members of the W.C. club..

I think of how fortunate the particpants in the study were to have that opportunity...
I can only imagine the disappointment on receivng the e-mail after your plans had been finalized to go to Germany..we can only hope that, at some point, the glaucoma exclusion may be lifted after further research and refinement of the treatment....
Thanks for being ever vigilant about any and all the information that you bring to us.

p.s. amazingly the vineyard analogy crossed through brainwaves this evening!!
Hope4thebest