Sunday, January 30, 2011

Premonition of Civil War

Salvador Dali, Soft Construction with Boiled Beans (Premonition of Civil War)

Okay.  This is where things stand:  After considerable confusion about names, addresses, phone numbers, and staffing... I was able to call the interventional pain center that is reportedly doing low dose ketamine infusions for CRPS/RSD.  That was about 3 on Friday afternoon.  The office was open until 4:30 pm but my call went to voice mail and I left a message. 

Then, of course, I started cooking something fantastically difficult.  I was also in serious pain, thanks to being over-emotional and moving around more than normal.  I don't know if I have mentioned that my right hip replacement, soon to have its 10-year anniversary, is, well, messed up and very painful -- the belief is that there's a post-replacement BooBoo.  Very painful.  Making sitting a nightmare.  It's called a periprosthetic femoral fracture.  (Turns out I did mention it.  What are the odds?)

The point being that I have to limit my time in the wheelchair and maximize my time with legs [carefully] elevated. 

So going full-speed ahead for four hours in the kitchen is kind of contraindicated.  If you've ever wondered why I cook so many things in stages, that's why!  I can rest while a dough rises.  I can rest while a protein marinates.  While something bakes, I'm in bed.

Not this past Friday.  In lieu of doing what I should have, I made ridiculous side dishes, each preceded by an intricate mise en place.  I made a sauce for everything on my menu, damn the calories, damn the weirdness.  I washed, dried, and put away every dish.  I washed things that weren't dirty. 

I even started a "kitchen" load of laundry, because God loves a clean oven mitt.

The phone rang twice.  Neither call was from the interventional pain center, confirming that they do subanesthetic ketamine treatments, that these treatments were custom-made for me, that we could start first thing Saturday morning, and that I'd be walking, dancing, twirling by Sunday evening.  Instead, I spoke with a flooring company and we agreed to a Monday morning delivery of 60 boxes of flooring, with installation scheduled for this upcoming Friday.  I told Fred that next Friday was *perfect* for me, as I would be cured of CRPS by then.  Unfortunately, I added, the installation schedule was going to interfere with my plan to win the Australian Open.  I was going to have to let Na Li take my place in challenging Kim Clijsters and allow the tournament to finish up a week early.

Luckily, changing my plans for swimming the English Channel (scheduled for the 7 - 8:30 Saturday morning activity block) didn't inconvenience anyone beyond the captains and stewards of Captain Haddock's private jet.  Clearly, I need to schedule more individual sporting championships -- out of simple courtesy to family, friends, fans, and support personnel.

So they didn't call.  So I served a many-coursed, complicated dinner that no one really wanted.  So I became terminally crabby, as well as, it sometimes seems, eternally depressed.  So Fred seemed not to be able to reference ketamine without also saying "horse tranquillizer." The first time he neighs, his ass is grass...

My go-to guy of MDVIP fame finally answered my middle-of-the-night email from Thursday.  Do you wonder why I trust this man as much as I do (never mind that he has saved my life a couple o'times)?

No worries. I agree with you about making the consultation visit and really seeing for yourself what it is all about. You are well read and educated on much of this stuff and you are very astute and I believe you will get a feeling one way ot the other whether this is right for you or not. I do know that group and I do have a few patients that I've shared with them and I personally have never had an issue. Give it a try...

That went a long way toward helping me to calm down.

I'm a stute!

In addition to being freaked out over the prospect of entering ketamine treatment, I failed to anticipate one of the more interesting things that happen when I am on the antibiotic regimen... my blood sugars, high from the impact of infection, DROP dramatically.  That's one of the reasons we're doing it, in fact.

An intelligent person, someone who was really A Stute, would have refrained from injecting herself with her usual 70/30 insulin.

It's just that the first two times on the antibiotic, the change in blood sugars happened on the second or third day. My numbers, this time, did not plummet so soon... it took a week. Still, I should have switched over to regular insulin only, and stayed away from the long acting stuff. Live and learn. And learn again. Then, in my case, relearn.

I have spent many hours reading... reading about the original protocols from Dr. Harbut, reading Dr. Schwartzman's studies, reading patient stories. Every so often, I make myself read something from the anti-ketamine crowd, a crowd that is not unsubstantial.

I can't ignore those who think it is too dangerous, too untested, too much of a question mark... because, though he doesn't press the point right now, that's Fred's opinion. {whinny::whinny::neigh::neigh}  Also, it turns out, the opinion of my half-sister, though she knows little about the technical, medical side of things. She said she did not want to have to come here to hurt someone. I'm still not sure whether she was referencing moi, The Stute, or the ketamine-wielding doctor in question.

I cannot seem to rein in [sorry] my wild hopes, though. What if my new insurance coverage won't recognize it as a valid treatment? What if my mind goes on a hike during the infusion, and doesn't come back? What if I am one of those who does not respond? What if I respond, but the pain comes back within a few days?

There is one poor man who worked hard to raise the $30,000+ for a trip to Germany and the ketamine coma treatment.  It was difficult and he had a slow recovery, but he was pain free for the first time in a decade.  He and his family travelled a bit around Europe afterward, and life was suddenly, amazingly, full of promise.  They boarded a plane a few weeks post-treatment and flew into JFK in New York.  He collected his luggage, a simple thing that he couldn't have done before ketamine, and headed out to find a van for the trip home.

He stubbed his toe.

Within minutes, his CRPS/RSD was active again, his foot and leg already changing color, becoming cold, the burning, burning, burning was back.  The stabs, the shooting pain.

True story.  A story I am trying to sit with for a few minutes each day.  Something has to keep me grounded.

American RSDHope, a website/organization that I have never much liked, has an entire section online dedicated to Patient Stories about ketamine treatment -- both the coma therapy and the subanesthetic version.  I think that I may have mellowed since the last time I visited American RSDHope, or they have become more responsibly cautious.  Whatever -- if you are looking for experiential reports, go there.

Below is a list of what I have read so far, the content of which is often redundant -- a redundancy that is both reassuring and frustrating.  Virtually all of it is available over at RSDSA, the site that remains, in my opinion, the most trustworthy of CRPS organizations. Excuse me for not giving the full citations.

Overview of Ketamine Infusion Therapy

Multiday Low Dose Ketamine Infusion for Treatment of CRPS

Use of  oral ketamine in chronic pain management

Ketamine in Chronic Pain Management:  An Evidence Based Review

The neurocognitive effects of 5 day anesthetic ketamine for treatment of refractory CRPS

Safety and Efficacy of Prolonged Outpatient Ketamine Infusions for Neuropathic Pain

Two Approaches to Ketamine Move Forward for Complex Regional Pain

Ketamine Treatment for Intractable Pain in a Patient with Severe Refractory Complex Regional Pain Syndrome:  A Case Report

Ketamine Provides Effective and Long Term Pain Relief in Patients with CRPS Type I

Efficacy of Ketamine in Anesthetic Dosage for the Treatment of Refractory CRPS: An Open Label Phase II Study

Ketamine:  Does Life Begin at 40?

Gambling on experimental treatment for pain

Glutamate and the Neural Basis of the Subjective Effects of Ketamine

Intravenous Ketamine for CRPS: Making Too Much of Too Little?

Outpatient Intravenous Ketamine for the Treatment of CRPS: A Double Blind Placebo Controlled Study

Effect of low dose intranasal (s)-ketamine in patients with neuropathic pain

Trapped in a Medical Nightmare: NJ woman travels to Germany for banned medical treatment, ends up fighting for her life

Update on CRPS (Johns Hopkins 2004 Annual Pain Meeting)

Update on low dose ketamine infusions
CASE REPORT:  Complete Recovery From Intractable CRPS Type I Following Anesthetic Ketamine and Midazolam
Relief for Worst RSD May Lie With Ketamine Coma

What if I get the call tomorrow, and what if they say they aren't doing ketamine infusions?  What if I get turned away because of co-morbidities?  What if it is inaccessible due to cost?
I can't allow myself to entertain this not happening.  I deserve a shot, a chance.  Oh, please, please, please... let this happen, let me try, let me at least try.
In the meantime, The Manor needs cleaning and straightening.  Fred is defrosting a couple of Wild Beast Loins.  It is a beautiful sunny day, and if the yeast will proof, I see deliciously fragrant homemade bread in our near future. 

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