Questions and Answers

What is Fern’s prognosis if she receives this treatment?
As we have already said, the procedure is extremely dangerous. Among the dangers are organ malfunction, and the complications associated with extreme weight loss. As Fern currently weighs about 100lb, that is a serious concern for her doctors. Fern is aware that this hope comes with a terrible risk, but she is desperate.

What is Fern’s prognosis without the treatment?
Because it took two years to diagnose Fern’s condition, it has made the disease extremely difficult to treat. Without the treatment she will continue to deteriorate. The pain, along with the progression of the disease and the side effects of the treatments will continue to take a heavy toll on her body and her spirits. As time passes she will become more and more disabled and need increasing amounts of care and medications.

Will Fern definitely be able to receive the treatment?
There are two reasons why Fern may be unable to receive the treatment. Firstly, of course, if we don’t raise enough money. Secondly, although Fern’s doctors are certain she is an ideal candidate, there is always the chance that she will not be accepted at the pre-acceptance appointment in Tampa.

What is the timeline of events?

Fern’s first appointment is on August 7th, 2009 with the surgeon in Tampa, Florida. At this point she will undergo a preliminary responsiveness test to confirm that she qualifies for the study. Due to her weakened state, Fern will travel to this appointment with a companion.
Fern could be scheduled to receive the Ketamine Coma trial in Mexico as early as three weeks after this initial appointment, but the latest she can leave is mid-Fall.
During the treatment, Fern will be put into an artificially induced coma, during which it has been demonstrated that her brain will undergo something akin to a ‘reset’.
After coming out of the coma she has to stay at the hospital for two weeks before she is allowed to travel.
A condition of participating in the trial is that Fern must travel to Mexico with at least one, and ideally three close family members. This is because the voices and presence of those closest to her will help to ensure Fern’s return from the coma.

What are the associated costs?
The cost of the trial itself is Cdn$
Other expenses, included in that total figure of $75,000, are:
a) Travel to Florida for Fern and a companion, plus accommodation, food and transportation expenses while there.
b) Travel to Mexico for Fern and three family members, plus accommodation, food and transportation expenses while there.

What will happen to my donation if Fern does not receive the treatment?
If Fern cannot receive the treatment, for any reason, the money raised will be used to assist with her care. She will continue to require on-going treatments, therapies and medication, all of which have represented a crippling expense for her family. As her condition progresses, she will also have an increasing need for things like a wheelchair and accessibility modifications to her home and vehicle. The money will be used only for those items absolutely necessary to make Fern as comfortable as possible.

What will happen to the money if you raise more than you need?
Once all the expenses of the trip and the treatment have been covered, any extra funds raised will be used for follow-up treatment. For the first three months following the trial, Fern must receive boosters every three weeks, possibly in Florida. After that, those boosters will be necessary every three months. These treatments are, obviously, expensive, but are a vital and ongoing part of the therapy.

How do I know my money will be used responsibly?
We have been very careful to put in place a system that ensures you can feel 100% confident making your donation. All funds are to be held in trust by the legal firm of Stewart & McCullough. They will only be released as they are needed, and for the uses specified above.

Why Mexico?
There is a popular misconception that medical care in Mexico is unorthodox and of inferior quality.
As a Canadian physician who has practiced in Mexico, I can say from experience that that is simply not the case. In fact, during the years that I spent in Mexico, I saw world-class hospitals and met doctors whose training and expertise was top notch. My family also received care from a number of them. Unfortunately not all Mexican citizens have access to
treatment in these facilities.

There are a number of reasons why a particular treatment may be available in Mexico, but not in Canada or the United states:

The potential for law suits in the United States, and to some degree in Canada, makes the use of many treatments unprofitable (this rules out the use of many potentially useful treatments that carry the risk of significant side effects in even a very small percentage of the population).
Also the rigorous scrutiny of the Health Protection Bureau in Canada or the Food and Drug Administration in the US requires costly scientific studies to be done before a treatment regimen can be approved; again this result in many potentially useful treatments not being approved since the costly research required would make the treatment unprofitable.
Both of these reasons apply to the ketamine coma therapy that is being considered for Fern. While ketamine has been used routinely and safely around the world since the 1960s, the specific use of a ketamine coma to treat Complex Regional Pain Syndrome has yet to be approved by the medical authorities in Canada and the U.S.A.

This treatment has been done in Germany and Mexico and data from multiple case reports suggests a very high success rate (well over 90%) - this is all the data we have to go on and due to the difficulty and cost of doing "double-blind placebo controlled studies" on such a therapy it is unlikely that any other type of research results will become available, and, therefore, it is also unlikely that this therapy will become available in Canada or the U.S.A. in the foreseeable future.

Dr. Patrick Stel, M.D.
Victoria, BC

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