Hey Frogga,

With your wonderful attitude and zest for life (even when it sucks at times) is amazing.
I agree that it sure sounds as though Ketamine has given you an improved quality of life and even though it isn't what you'd choose, you have made the best of an ordinary situation.
After all, how many of us are gutsy enough to fly away overseas? You are an inspiration to me.
Love Tayla

Tayla and Frogga, thanks so much for all the help. Thanks everyone! It is great to have folks who can help you out when you need.

Tayla-
Yes, it is a 5 day continuous inpatient infusion. I looked at the differences between the outpatient infusions and inpatient infusions and the latter really seems to be the better one. If I am going to shoot for it, I might as well go inpatient since it is going to cost an arm and a leg (think: $25,000)!

see: http://www.rsdhope.org/Showpage.asp?...2&PGCT_ID=4123

Apparently once in a great while you can get the insurance to pay a little after battling it out- but not up front. I have great insurance- BCBS-, but they aren't likely to pay for anything other than a doctor consultation, psychiatrist visit and blood work, unfortunately.

Alright- best be off, bad day, and I have been searching for so many things to get this to work. Knowledge is power, as they say.

I am looking for STUDIES that show the percentage of how many people get ___% relief from the Ketamine Infusions. I need to find this information ASAP. I am searching for actual studies that prove what percentage rate I have of getting improvement with it. It is vital to know before fundraising starts, and something I have to have to write letters to organizations.

THANKS!

Hi Vanessa,

I had the continual 5 day infusion from dr Richman in NYC- Hospital for Special Surgery.. It might be worth your while to call there so you wouldnt have to travel so far...
My experience there was really good- Excellent staff- Unfortunately the ketamine did not work for me at all BUT I dont have many of the typical RSD symptoms- the ones the ketamine does seem to help...If you want more info on the hospital let me know- My insurance covered most of the procedure- I think we paid around $2000 all together with no begging at all

Let me know what else I can tell you!

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

Sorry you aren't feeling well Vanessa,

I will try and get my hands on some studies done here as to the efficacy of ketamine infusions.
I am sure that my team would somewhere have that data so I will ring their rooms.
There maybe some difference in outcomes between countries though Vanessa as I am wondering if because here it is covered by medicare and failure of the treatment, whilst being upsetting, does not also hit the hip pocket causing all the extra issues that this brings to the table.
Will see what I can find and please let me know as I would very much like to be a part of any fundraising to help you attain your infusion.
Best wishes
Tayla

Nothing else has been published. Only 40+ people have had the coma, I belivie. What Galeana posted was everything that I have ever read on ketamine. Nice research Galeana.! One other key word to type in the search is Shannon Stocker. She has kept a great log following her ketamine coma and has had great success.

Nessa
I am only posting for you honey then I am out a here

Please do a search of my threads on this topic and then email me OK ??
We need to discuss this thoroughly


Love
GnP

Thanks everyone!

Debbie- PMed you!

Galena- I had found that one, and I was stuck there, wondering WHERE I could find more. SO, there aren't any?! Eh, that is the reason then. Thanks!

Tayla- thanks! I appreciate that! So sweet of you- I am working on creating a web page- one web page for my little clay business and then I will have a separate fund raiser site online too.

CZ- thanks, I am looking up Shannon now.

GnP- You only got the oral/ one infusion then? I will email you as soon as I can.

Now what we are looking for, is even articles written by the doctors or someone else that says how much success Dr. Schwartzman is getting, how much success Dr. Harbut is getting, Dr. Getson and so on...on both inpatient infusions and outpatient infusions. Sorry about all the questions, but it is hard to know with this. If it costs thousands of dollars for 3 months relief than it doesn't sound so good, so we are quite unsure. What is the average rate of success for a patient with RSD, getting inpatient/ outpatient Ketamine?How much am I paying for how much relief and for how long?

Sorry for the grammar and all, I am having a bad day and I slept 2 hours last night. Each night is getting harder for me, I am not sleeping through this. The pain is making me sob to sleep all night long. Rough going, please be praying for me/ sleep- we don't seem well acquainted anymore!

Vanessa, the problem is the amount of rellief everyone gets is different. Just as the doses are. Obvioulsy those trying this have tried everything else. the general rule of thumb from what ive read is that you can expect a 50% redution in pain. It is not a cure. That,the reduction, is a huge amount when your pain is in the 8-9-10 zone as you unfortunetly know. For that reason alone it is worth funding, explaining the devasting effect of long term use and dosage or some of the medications we need to survive. Now I do have a good friend that it did not help at all. So everyone is different. but generally those it does help the pain continues after 3 months but at a lower level.
for some that lower level is enough to resume their old life for others is means the ability to lower meds - which is so important. When applying dont forget that if successful booster infusions are normally required even after a 5 day infusion. or I should say especially after a five day infusion. To keep the "connedtion asleep". Hope this helps. cz