Philly Bound?

I rarely send out an email loaded with blind copies, mostly due to the divergent nature of my group of friends and family.  This morning, though, was a wonderful exception. 

Hi --

This is a group email. I wanted to update everyone on the latest. An opportunity has come my way that I am excited to pursue.

Dr. Robert Schwartzman is one of the few true experts on CRPS/RSD in the world. He was the first to follow strict research protocols in the administration of the so-called Ketamine “coma cure,” pursuing this in Germany with great success. Dr. Anthony Kirkpatrick has a similar program in Mexico. Several years ago, they began investigating subanesthetic (i.e., non-coma) Ketamine infusions, and this option has become available at a short list of places throughout the United States. However, not every site employs the same protocols for administration of subanesthetic Ketamine, so it is sort of a mixed bag in terms of success.

I was lucky enough to find a location offering the treatment here in Tête de Hergé. Unfortunately, the protocol being used there is more conducive for treating other types of severe, intractable pain. It seems that CRPS responds best to what amounts to a blitzkrieg – [outpatient]10 days straight at a fairly high dose with follow-up “boosters," or [inpatient] 5 days continuous infusions, also at a high dose. The program at the X Center here is limited by funds, space, and staffing, and currently can only offer the treatment 3 days a week in short sessions.

After 6 infusions, spaced over a couple of months, I had no improvement. I wrote Dr. Schwartzman two weeks ago, asking what could be done to optimize the impact of the infusions. He wrote back with some explanation of the protocol he believes most effective, and invited me to see him in Philadelphia, where he is Chair of the Neurology Department at Drexel University College of Medicine. But it turned out that he has over a 2-year waiting list of patients, so I curbed my enthusiasm and began to scope out other options – for example, there is a Ketamine program at the Hospital for Special Surgery in New York City.

Then, yesterday afternoon, I got an email from Dr. Schwartzman’s Clinical Nurse Specialist, Ms. D, offering me an “expedited appointment.” It’s been a good while since I have cried for happiness.

Ms. D added: “He would also welcome your physician and/or the staff at x Institute to come to his RSD pain clinic any Monday to observe and discuss treatment protocols.”

There are still substantial problems and variables to address, beginning with any “exclusion criteria” they may employ at Drexel, and the logistics of getting there [$$$]. Even so, it would be worth going simply for the evaluation, I think.

Clearly, I am not quite done with what the X Center is offering and will see the doctor there soon.

[Click HERE for a short bio of Dr. Schwartzman.]

I have not been the most reliable communicator these past few months and hope everyone can forgive me. Of course, some of you are likely sick to death of hearing from me, and to those folks, I can only say “Thank you for your forbearance.” If anyone has any great ideas on how to get this done, please write. (Would you like to go with me?!) And if EVERYONE would think good and encouraging thoughts, I’d appreciate it!

Best wishes to one and all --

(Bianca; Eljay; Prof -- and other assorted noms de plume)