By Ana Sofia Gutierrez
I was 16 years old when I found out about the high dose ketamine treatment. I started investigating what the risks would be to me. I had RSD for almost four years before I decided to go forward with the ketamine coma treatment. I was in a wheelchair for five months, and thanks to physical therapy I could walk again, with a lot of pain, but I could walk. I was really tired of having very severe constant pain. Sometimes I even fainted because of the pain, so I saw the high dose ketamine treatment as a great opportunity.
I remember perfectly when the doctors in México were explaining all the risks to me, but I think that every patient with RSD would understand that you would try everything that has a chance of making you feel better. So I entered the Hospital San José in Monterrey, México, where they did some final studies on me. The next day I was in the Intensive Care Unit (ICU).
After a week in a coma the pain went away. I was thrilled after years to finally have the pain disappear. Then the most difficult part came- when your body gets rid of the ketamine. I remember having a lot of hallucinations, even hearing voices that didn’t exist. I felt very anxious, but nothing could compare to the tiredness I felt; it was as if a truck had just run over me. I got to the point where I didn’t even talk because it cost me a lot of effort. All of this time I had the support of the doctors and nurses, who were extremely kind, but most importantly I had the support of my parents. They were allowed to be with me all the time and my mom even stayed with me during the night. This gave me peace because when the hallucinations came there was always someone with me to calm me.
I was pain free for about a month, then it returned at a very low level. I have had 3 low dose ketamine treatments that helped me stay pain free for about a week or so.
I think the ketamine trial is a great opportunity because it has changed my style of life completely. Now I can do everything a girl my age normally does.
I couldn’t be more thankful to all the doctors who collaborated in my case and in the investigation.
By Ana’s Parents
In January, 2005, Dr. Anthony Kirkpatrick at the University of South Florida replied to our email concerning a research study on ketamine coma for RSD patients. The treatment had been used in Germany with very good results of total pain remission. Because of the email, my wife and I started doing research about the treatment. After analyzing some documented cases, our main concerns centered on ketamine’s side effects.
Several months later, we contacted Dr. Fernando Cantu in Monterrey, Mexico, where we live, to discuss the possibility of using the ketamine treatment. The hospitals in Monterrey are well equipped and the doctors are internationally recognized as very competent. Dr. Cantu had trained in anesthesiology and pain management at the University of Texas before returning to Mexico.
At that time, Ana Sofia, our daughter, was 19 years old and the RSD started when she was 15. During this period, she had more than 20 sympathetic blocks and visited the hospital more than 40 times. She got some pain reduction but it was still incapacitating .... at times she was confined to a wheelchair and her left upper extremity was disable with severe dystonia.
With such a history of pain, along with consultation with Dr. Kirkpatrick and Ana’s insistence, the decision was made together with Dr. Cantu to have the ketamine treatment done in Monterrey.
Once we reached that decision, Dr. Cantu went to the Ethical Committee of Hospital San Jose de Monterrey to discuss the ketamine treatment for RSD. A member of the committee visited Ana, my wife and I, to interview us and we explained that the treatment had been used for other RSD patients, but this was going to be the first time for the San Jose Hospital in Monterrey, Mexico. We also discussed some of the treatment risks. We all agreed to continue.
The Treatment
The treatment consisted of 5 days of ketamine intravenous infusion in an ICU that could be extended 48 hours more to reduce the ketamine dose. During this period, my daughter was supposed to be unconscious.
During the first two days of treatment, Ana couldn’t get to sleep completely. The brain monitor showed activity above the level that Dr.Cantu was expecting. When my wife and I entered the ICU the brain activity increased, even when we were talking in a whisper. It seems that she was aware of what was happening around her.
On third day, the brain activity was down to the expected level. Then we saw some changes in her body. Her hands and feet weren’t as blue as before and the temperature of her hands increased. Those were the only visible symptoms of improvement.
From day three to five, nothing important happened. Ana was completely unconscious.
The first and second days after quitting ketamine were the worst. My daughter experienced involuntary movements and needed to be tied to the bed to reduce the danger of an injury. She was anxious and wasn’t completely conscious on those two days. On third day, she couldn’t remember anything. Another side effect was tiredness. She looked and felt very tired and didn’t speak very much, but most importantly, Ana had no pain.
The pain came back on a lower level the fifth week after treatment. During week six, she was given a low dose of ketamine.
Today, ten months after ketamine treatment, Ana has had study trips to France, and vacation trips to the US and Mexico. She finished her high school with honors and just started college as Graphic Designer.
The pain is much lower than before, is still there, but she has been able to do what she wants.
Update by Ana - May 3, 2007
Dear Dr. K:
Since everyone is doing so much better I don't want to be left behind, so here's my progress... Today was the first day after 4 years and a half that I didn't take ANY medicines!!! not even Lyrica or Cymbalta, I'm officially off medications! I can express how happy I am, or good it feels to see all the progress I made over the last years. I'm sure everyone that undergoes the Ketamine Trial feels the same way I feel, it is a life changing experience. I hope this news makes you as happy as it made my family and Dr. Cantu.
Regards,
Ana
Editor's Note
The experiences of Ana and my daughter, Lindy, were very much the same, even though Lindy had the high dose ketamine treatment done in Germany rather than Mexico. Although some medical complications occured during the treatment, Lindy feels that the ketamine coma treatment was definitely the right decision.
Ana and Lindy are both going to college now and as Ana says “doing everything a girl their age normally does.” Elizabeth Jones also relates her experience with the high dose ketamine treatment in Germany in a video on this website. In September 2006, she delivered her first child, Sophie Jones.
Although their pain is not completely gone, this treatment has allowed all three prisoners of RSD to finally have a real life again.
Kathleen C. Snyder
Administrative Assistant
International Research Foundation for RSD / CRPS
August 2006
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