Meet Pat
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Pat’s Pain Condition
Words can hardly describe my wife’s experience, 
though I have tried to do so at another website (the Medical Synopsis link), which provides a brief synopsis of her medical condition (with nice photos and sounds) and links to several videos relating to her treatment. Until January 2007, we lived a charmed and happy life together. She was a devoted mother, a hard-working Emergency Room nurse, and an active, health-conscious lover of the outdoors. She was the perfect wife for a biologist, eager to help with my field studies of endangered reptiles and birds. But when she developed what appeared to be severe shin splints, everything turned upside down. The pain in her shins refused to go away and gradually became worse and worse, eventually settling into her pelvis and low-back region. After numerous treatments, many not covered by insurance and costing us tens of thousands of dollars, her unrelenting pain has continued to this day. She has been diagnosed with complex regional pain syndrome (CRPS), otherwise known as reflex sympathetic dystrophy (RSD), which is a rare, frequently treatment-resistant pain syndrome that many consider to be one of the most painful conditions that exists. You can read more about the disease here and contemplate this sobering figure (from several textbooks) that compares pain severity (via the McGill pain index) among a number of conditions.
Eventually, Pat felt that we were out of options for curing her pain condition. The longer one has CRPS/RSD, the more intractable it becomes, as the pain generally continues its spread throughout the body, causing irreversible damage. Our last hope is now an experimental treatment not available in the U.S. It’s known as the five-day ketamine coma. After visiting Dr. Anthony Kirkpatrick in Tampa, Florida, in June 2008, we were greatly relieved that she qualified for the Mexico study. She underwent the treatment in July, 2008. Although she benefitted greatly from it, there have been some set-backs, and we have now addressed surgically two injuries that appear to be triggering the return of her CRPS/RSD pain: a hyper-mobile tailbone (now removed) and entrapped sciatic and pudendal nerves on the left side of her pelvis (now loosened up). She is undergoing the coma for a second time in June 2009—this time, hopefully, for a lasting relief from pain.
The Ketamine Coma Study
The theory behind the treatment is elegant. What happens to CRPS/RSD victims—and some other chronic pain patients—is that their nervous system dramatically rewires itself to more effectively conduct pain impulses, a process known as “wind-up” or “sensitization.” Eventually, the pain becomes all-consuming and takes over the victim’s life. Among the changes that occur, NMDA pain receptors multiply like flies on a cowpat, greatly facilitating the transmission of pain signals to the brain. Remarkably, the ketamine aggressively binds to these receptors, blocks their activity, and ultimately reverses the sensitization process, allowing the nervous system to ”reboot” itself. Unfortunately, ketamine has some nasty side effects. When emerging from the coma, patients experience hallucinations, lack of body awareness, visual distortions, confusion, and weakness. The procedure carries a high level of risk. And insurance will not cover the treatment.
The coma treatment is not currently available in the U.S. Two studies are underway in Germany and in Mexico. According to Dr. Robert Schwartzman of Drexel University, Pennsylvania, who was a principal investigator in the ongoing Germany study, 14 cases out of 41 patients in the initial ketamine-induced coma experiments appeared to be completely cured. "We haven't cured the original injury," he says, "but we have cured the RSD or kept it in remission. The RSD pain is gone. No one ever cured it before. In 40 years, I have never seen anything like it. These are people who were disabled and in horrible pain. Most were completely incapacitated. They go back to work, back to school, and are doing everything they used to do. Most are on no medications at all. I have taken morphine pumps out of people. You turn off the pain and reset the whole system."
To learn more about the Mexico study (which, technically, is not termed a “treatment”), Dr. Kirkpatrick, of the International Research Foundation for RSD/CRPS in Tampa, Florida, maintains an impressive website with many pertinent details. He is a co-researcher for the study that is headed by Dr. Fernando Cantu of Monterrey, Mexico. By clicking on the Medical Synopsis link, you can learn more about Pat’s specific condition. From there, you can click on another link to an excellent 5-minute Fox News report, or you can continue to explore the website to better appreciate the legitimacy of Pat’s illness and treatment.
How You Can Help
The procedure, undertaken as part of a carefully regulated study, is costly. By the time the treatment is completed, including the coma in Monterrey, Mexico, and follow-up ketamine boosters and testing in Tampa, Florida, it will cost us more than $50,000 out of our pockets, as our insurance will not cover even a nickle of ketamine therapy. And we are now doing this for a second time! We can certainly use some help. Other patients have succeeded in raising all of the needed funds prior to their treatment, which absolutely amazes me, but we have not been so fortunate. Regretably, we do not have a tax-exempt foundation that you can contribute to. If we approach the $50,000 goal for the second coma trial (the first has been paid for, all but finishing off Pat’s retirement account), I will update this page and make clear where things stand, as we are not seeking anything beyond this amount. It’s painful asking for anything at all. If you know of someone eager to donate to a good cause, perhaps you could forward these details to them.
You can write a check to help defray our expenses by making it out to Patricia Barry-Faillers or William Hayes and sending it to the following address:
William Hayes
Department of Earth and Biological Sciences
Loma Linda University
Loma Linda, CA 92350
Or donate online with PayPal or your credit card:
If you feel the need to learn more about me, you can click on the Dr. Hayes link and navigate from there.
Please feel comfortable browsing these links regardless of whether you wish to help out. Your prayers would actually mean more to us than anything else.
Blogging the Experience
Pat underwent the ketamine coma in July, 2008, and is undergoing the second coma in June 2009. If you wish to read about her daily experiences, please click on the Blog link.
UPDATE: 14 September 2008
We are very grateful that Pat had the opportunity to participate in the ketamine coma study. Although the coma benefits were not immediately apparent due to post-treatment complications, the treatment clearly provided substantial, though incomplete pain relief (visit the blog for details). Personally, I suspect it has saved her life. Generous donors have thus far provided $3,945.00. THANK YOU!
UPDATE: 31 May 2009
I can hardly believe we’re doing this again, but Pat began her second coma early this morning. We raised nearly $4,000 for the first coma, and can only hope to do much better this time around. It is so difficult to ask for help; again, your prayers would mean more to us and probably do more good than a monetary gift.
 July 2008 condition |
 Soon to be again . . . |
| Website created and maintained by Aaron Corbit |