The Carrie Deussing RSD Foundation
A Non Profit Organization
Please visit the "MY BLOG" tab for the latest news & status of my treatment while I'm in Mexico!
About Me
My name is Carrie Deussing; I was a successful career woman who loved her job. I was married two years ago to my husband Arthur. We celebrated my 30th birthday in
My symptoms started on 7/20/2007 and quickly spread throughout my entire body within a few weeks. I may look "healthy," but I suffer with a great amount of pain. My skin also swells, changes colors and temperature. I hurt at the slightest touch. It's difficult to sleep and I have difficulty walking and sometimes my body may shake or spasm.
I was diagnosed by Dr Philip Getson with full body Reflex Sympathetic Dystrophy (RSD), also known as Complex Regional Pain Syndrome (CRPS). Although doctors don't know why someone develops RSD, it is a progressive disease of the autonomic nervouse system that can follow an injury/trauma or can be brought on by certain diseases or disorders. RSD is usually isolated to the body part of an injury/trama site. In a very small number of cases - 8% or less it can become Systemic or body-wide as it has in my situation.
My RSD diagnosis was confirmed on September 17, 2007 by Dr. Robert Schwartzman, Professor and Chairman of Drexel University College of Medicine, Department of Neurology. At this time, there is no cure for RSD/CRPS. Anyone can get RSD. There are millions of people across the United States with this disease. It affects women 4 to 5 more times then men usually in their 30 - 40's. It is ranked as the most painful form of chronic pain that exists today.
The CONSTANT PAIN is described as a burning pain as if your body or affected body part were being placed into a blazing fire. You also experience throbbing, aching, stabbing, sharp, tingling, and/or crushing sensations in the affected area(s).
Allodynia, an extreme sensitivity to touch, is usually present. Something as simple as a slight touch, clothing, sheets, even a breeze across the skin on the affected area can cause an extreme amount of pain. Pain can also be increased by sharp/loud sounds and vibrations. Being a passenger in car a can become very difficult and painful.
Dr. Schwartzman has recommended that I be put in a five-day Ketamine Coma. He only sends the most advanced cases to Germany as the procedure is not available here in the United States. Ketamine is considered a class 3 drug in the US therefore only a small amount is legally allowed to be administered at a time. High doses that are required for the five-day coma are only legal overseas.
The waiting list for Germany is very long and my name wouldn't be coming up anytime soon, not at least until the year 2010. I looked into an alternative facility in Mexico. The program follows the same clinical protocols that are used in the German trials and program is managed by Dr. Anthony Kirkpatrick, MD PhD out of Tampa, FL. Dr. Kirkpatrick works closely with Dr. Schwartzman here in Philadelphia and they co-coordinate care on many patients. I was accepted into the program and could have the treatment as early as July or August of THIS YEAR!!! (2008)!
The cost of the treatment is less then the Germany treatment by far. My goal is to raise $50,000 to cover any Pre & Post treatment, travel expense and of coarse the hefty hospital bill for the Coma Treatment Procedure. The average length of stay in Monterrey, Mexico is about 2 weeks in ICU, 1 week in a regular hospital room and about 1 week in a hotel. Not necessarily in that order.
In Mexico, I will be put into an induced coma and on life support equipment for 5 days. During this time they will administer high doses of Ketamine. Dr. Schwartzman pioneered this new treatment, which resets the link between the pain sensory neurons and the brain. The coma calms the nervous system and "reboots" the patient, much like a computer. After the 5th day they slowly wake me up. The goal is to wake up pain-free. Both Dr's Schwartzman & Kirkpatrick tell me that that since my symptoms started so recently I have a great chance of a complete recovery. There will be physical therapy after the procedure and I will also need occasional boosters (IV infusions) of Ketamine. I know the risks, but I also know that it's my only chance of regaining a normal pain free life at 30 years old!
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