Originally Posted by GalenaFaolan

There are no government backed studies or anything that you can point to. The only percentages of this particular subject come from less than a handful of doctors who actually give this to the worst rsd patients out there, of which the one article states has been only 26 people in Germany for the coma treatment.There are no medical studies or articles in medical journals that have any stats because there are none.


Low doses of a common intravenous anesthetic may relieve debilitating pain syndrome
Harbut R MD

23 Sep 2004



Limited, low-dose infusions of a widely used anesthetic drug may relieve the often intolerable and debilitating pain of Complex Regional Pain Syndrome (CRPS), a Penn State Milton S. Hershey Medical Center researcher found.

"This pain disorder is very difficult to treat. Currently-available therapies, at best, oftentimes only make the pain bearable for many CRPS sufferers," said Ronald E. Harbut, M.D., Ph.D., assistant professor of anesthesiology, Penn State Hershey Medical Center. "In our retrospective study, some patients who underwent a low-dose infusion of ketamine experienced complete relief from their pain, suggesting that this therapy may be an option for some patients with intolerable CRPS."

The study, titled "Subanesthetic Ketamine Infusion Therapy: A Retrospective Analysis of a Novel Therapeutic Approach to Complex Regional Pain Syndrome," was published in the September 2004 issue of Pain Medicine, the official journal of the American Academy of Pain Medicine.

CRPS (type I), also known as Reflex Sympathetic Dystrophy Syndrome (RSD), affects between 1.5 million and 7 million people in the United States and is oftentimes marked by a severe, burning pain that can be very resistant to conventional therapies. The pain frequently begins after a fall or sprain, a fracture, infections, surgery, or trauma. Often present in the limbs with possible later spreading to other parts of the body, patients also may experience skin color changes, sweating abnormalities, tissue swelling, and an extreme sensitivity to light touch or vibrations. The McGill Pain Index rates CRPS as 42 on the scale of 50, with 50 being most severe.

Although much is unknown about CRPS, the pain experienced by patients appears to be caused by over-stimulation of a nerve receptor complex involved in the process of feeling pain. Therefore, efforts have been made to treat CRPS by blocking these receptors. Whereas most pain medications do not effectively block these receptor complexes (often referred to as NMDA-receptors), ketamine does.

The study was initiated by Graeme E. Correll, B.E., M.B.B.S., and involved reviewing the medical records of 33 patients with CRPS treated by Correll. The patients, some of whom had failed to obtain pain relief from conventional therapies, were treated with low-dose inpatient intravenous infusions of ketamine between 1996 and 2002 in Mackay, Queensland, Australia. Ketamine infusions were started at very low rates and were slowly increased in small increments as tolerated by selected patients. The therapy was then continued as long as the patient tolerated the drug and continued to benefit from it. Treatment cycles generally continued until the patient experienced complete pain relief; until initially-obtained relief would not improve any further; or for no more than 48 hours if there was no improvement in pain severity.

Pain was completely relieved for 25 (76 percent) patients, partially relieved for six (18 percent) patients, and not relieved for two (6 percent) patients. Although the relief obtained did not last indefinitely, 54 percent remained completely pain-free for three months or more and 31 percent for six months or more. For 12 patients who received a second treatment, 58 percent experienced relief for one year or more with 33 percent remaining pain-free for more than three years.

The most frequent side effect reported was a feeling of inebriation. Hallucinations occurred in six patients with less frequent side effects including complaints of light-headedness, dizziness and nausea. Liver enzymes were altered in four patients but resolved after therapy.

The exact mechanism of sustained pain relief is unknown, but is currently under study at Penn State Hershey Medical Center. Harbut likened the ketamine treatment to the healing of a broken bone. "If someone breaks a bone and you simply put the two pieces back together, they won't immediately heal. However, if you add a splint and hold the bones steady for a period of time, and then later take away the splint the bone is healed. I believe that the ketamine treatment does something similar that lends support and allows the nerve cells to heal themselves, so that when you take away the ketamine, the pain is reduced or gone."

Harbut began studying CRPS with Correll during a work assignment Harbut volunteered to take in far northern Queensland, Australia, in the late 1990s. Correll was developing a therapy for CRPS but wanted a collaborator to formally research the effectiveness of the therapy. Harbut brought Correll's method back to the U.S. where he developed an FDA-approved study protocol (used at the Mayo Clinic Scottsdale) using this method to attempt to treat post herpetic neuralgia, another pain disorder with symptoms somewhat similar to CRPS. At the same time, Harbut met a patient who had suffered with intolerable CRPS for nine years who wanted to try this new therapy. That patient became the first successful treatment of intractable CRPS in the U.S. (A Case Report of this treatment appeared in the June 2002 issue of Pain Medicine.)

"Ultimately, we want to find a way to improve the quality of life for those who suffer with intolerable CRPS, some of whom at times contemplate suicide because of their endless pain," Harbut said. "Although optimistic about these early findings, certainly more study is needed to further establish the safety and efficacy of this novel approach." (A large clinical study is currently planned and under development at Penn State Hershey Medical Center.)

In addition to Harbut and Correll, the team involved in this study included: Jahangir Maleki, M.D., Ph.D., and Edward J. Gracely, Ph.D., Drexel University College of Medicine; and Jesse J. Muir, M.D., Mayo Clinic Scottsdale.

Article found here : http://www.rsdcanada.org/parc/englis...udies2003.html


http://home.comcast.net/~fightrsdwithlisa/articles.html

Quote from the above article: The earlier the condition is treated, the more effective it seems to be - but there is no cure and no one treatment works universally, experts say. The ketamine coma is only for the most serious cases. A number of U.S. doctors use ketamine in small doses to treat pain while patients are awake, but Schwartzman and two German colleagues, Ralph-Thomas Kiefer and Peter Rohr, are the first to infuse it in comatose patients for up to seven days. So far, the trio has treated 26 American patients in Germany. All patients received significant temporary pain relief, and nine remain completely pain-free from nine months to three years after the infusion.

Ketamine is FDA-approved in the United States for two-day use when the patient is awake, but Schwartzman holds out little hope that the coma procedure will ever be allowed here. At Hahnemann University Hospital in Philadelphia, Schwartzman studies ketamine use for less severe patients and as boosters for those who have returned from Germany.

He just finished a study of 50 patients who were awake during five days of ketamine use - also not enough, he said - and plans to go back to the FDA in a couple of months for approval to try 10-day outpatient infusions. It may seem strange for a mind-altering substance to be used medically, but the history of ketamine is like many other drugs - if it works for one thing, scientists say, let's see if it works for another.


http://www.rsdhope.org/Showpage.asp?...2&PGCT_ID=3905

and continues to part 2 as well.

http://www.rsds.org/3/treatment/ketamine.html

Originally Posted by woundedknee

Hello everyone,
My spouse has suffered with RSD in the knee resulting from an operation that was not even in the knee. Conventional nerve blocks were not providing relief. We were introduced to Dr. Richman in New York and recently completed a week long inpatient Ketamine treatment. This is the first relief that has worked in 8 months. But it is not over, there are booster treatments to follow.

My problem is that our major insurance carrier with a high option plan is only paying the first two hospital days and has started denying the rest as experimental. Bad enough I may have to pay out of pocket for several days of hospital but also I am worried they will deny the boosters which means, all of this was for nothing?

The insurance companies say there are not enough studies and it is all experimental. They endeavor to ignore the facts that have been published for the last 10 years because on technicalities, they want bigger studies. The only way I can see to change this in the near term is with nationwide evidence that on a case by case basis, treatments ARE being paid for. If we can get organized with that evidence, we should be able to improve the chances of coverage being approved.

Some of you have had luck with your insurance. I would like to suggest that we pool information in some way that can be shared. This must be done in a way that maintains our confidentiality of course! I will be happy to host phone conferences, face to face meetings, whatever will work. What I am hoping we can do is to start lists of this kind of information:
1. A really complete list of studies and results for all treatments. There are many incomplete lists out there because each site is run by different volunteers with limited time and resources, and most of the lists are not updated.
2. CRPS and RSD treatments that are easily paid for by insurance
3. CRPS and RSD treatments that are difficult to be paid for by insurance
3a. A list of Doctors who have been successful in getting insurance companies to pay for treatments in list number two.
3b. Reasons given by insurance companies for denying payment for treatments in list number two.
3c. Examples of successful appeals for treatments in list number two that resulted in the insurance paying up. In particular, examples of the language of the appeals and the evidence given in the appeals (such as publications and studies) that made the appeals successful.
4. A list of case study stories for reference as to what works and does not work when dealing with insurance companies - completely confidential.
5. A list of people who would be willing to act as contacts to talk to persons with similar predicaments with their insurance companies. This could also be done in a way to protect confidentiality - at a minimum by private messages in a forum like this.

Anyone interested in working with me on this? Please post to the forum and and send me a message!

This is the first and only discussion I have found on the internet regarding insurance, payment and coverage questions! And yet to me it is one of the most important discussions that needs to happen. I am not proposing to replace other CRPS or RSD sites. I would be happy to work with any existing site and webmaster to make this happen. On the other hand, I have time, and a lot of webspace, and I will make this a personal priority.