Dear Dr. Kirkpatrick



I want to begin by thanking you and your research team for working so hard at trying to find a cure for this devastating disease. My visit to your clinic was an amazing experience; everybody in your office is so very kind and caring. You really make your patients feel safe and in very capable hands.


So let me begin by tell you a bit about my life and the kinds of activities that I was doing before this nightmare all began. I was very active in the arts community. I am a lighting technician and I’ve worked for several Musicals over the years and most recently the Royal Winnipeg Ballet. These productions are very physically demanding with long hours and lots of travel to destinations all over the globe.

 

Part of my daily routine was to hang and focus hundreds of theatre lights 30 feet above the stage which takes a better part of a day to complete. When all that is complete we would run through the lighting cues and prepare for the Actors or Dancers, depending who I was working for at the time.



During my time away from work I liked to spend time at the family cottage enjoying swimming, water skiing and my favorite of all Scuba Diving. I enjoy riding my bicycle and walking which I do not do anymore because of my RSD disability.

 

One spring day at the end of May 2004 I was at the cottage helping my family clean up the grunge and dead leaves and tree branches that winter had left behind. I did not have gloves on to protect my hands, and that time is when I received a skin puncture on my left thumb. At the time I thought nothing of it, but a couple of days later my thumb became very painful and swollen. I wasn’t going to do anything about it but thought twice because in a few weeks I was going on a tour to China.

 

I went to the Hospital and was told that I had an infection (cellulitis ) in my thumb and that I was going to have to be put on intravenous medication to help cleanup the infection. So I was put on IV medications 3 times a day for one week.

 

After the week on medication was complete I was told by the hospital doctor that my infection had been cleaned up and that I was healthy enough to continue on and go on the China tour I was about to leave on.

 

At the end of June 2004 I left for China and arrived in Beijing and we began working. At that point everything was fine. Then about 14 days into a month long tour my thumb began to get very painful again. When we left Canada my doctor suggested that I bring some oral medication with me, so I began taking Keflex at the time in hopes of it helping my painful and now discolored thumb. I continued taking the medication until I returned to Canada in the first week of August 2004. That’s when I went back to the hospital and was started on intravenous medication again. They inserted a pic line and I began receiving my medication as an outpatient and had a nurse come to my house to teach me how to administer the meds.

 

Months went by and no change! I then went for a bone scan and it revealed an infection in my knuckle in my thumb. I was sent to a Plastic Surgeon and it was decided that I needed to have my knuckle cleaned out. That didn’t help so it was decided to fuse my thumb. Things were progressing well at that point. Then in August 2005 I had a wart removed from my left elbow. That is when things changed and got worse. My arm swelled up so badly and was so painful I thought I was going to go crazy. I couldn’t sleep and it was so swollen and sore I couldn’t touch it. It was so sore that my hair on my arm hurt and it burned and felt like I was being electrocuted.

 

I was already going to the pain clinic; I think that is when it was decided that I had a severe case of Complex Regional Pain Syndrome Type 1. Since I returned from China I have been unable to work and enjoy myself. On most days I can barely get out of bed and I have been to the hospital emergency room at least 20 times over the past 2 years.

 

I had a spinal cord stimulator inserted in my back in January of 2006 and at first it seemed to help my pain. It made my pain feel fuzzy and interrupted what I call my burning electric hell. Since 2006 I have been going to the pain clinic for treatment at least once a week. I have gone there in tears crying so hard because it hurts so much that it affected my pain level and I knew I had to calm my self down because it wasn’t helping my situation. So I started to go and see a pain psychologist and he has taught me several techniques to help calm myself and relax. This has helped my emotional and mental status, but my pain is still there and worse than ever.

 

I don’t even know how many Doctors I’ve seen, I would probably say 20 or 30 and most of them don’t know what to do with me. Most of them don’t know anything about RSD or even how to begin to treat it. This was so emotionally frustrating and I thought that that was it; I was going to be like this for the rest of my life! That’s when I started to think about ways of killing myself. I thought this could be easy; I had bottles and bottles of different pain medication narcotics. But I started thinking what if I woke up! Then I thought about jumping off a building, I just can’t stand the excruciating pain day in and day out. It never stops and when I get flare ups all I want is to be put to sleep so I don’t have to deal with the pain.

 

The only thing that has helped me is the treatments I receive at the pain clinic. I have had numerous stellate ganglion blocks that resulted in minimal relief on my pain. I also have had 50 or 60 supraclavicular brachial plexus blocks that froze my arm for 5 to 10 hours and gave me mental relief to get ready for the next on slot of pain. I have also undergone painful physiotherapy, biofeedback, lymphatic massages, hospitalizations and numerous other interventions and have had little to no relief.

 

These are the medications and creams I have been using over the years:

Cephalex

Clindamycin

Calcitonin nasal spray


Ceftrioxen

Diclofenac in Phlogel compound

Gabapentin


Diclofenac in Diffusimax

Ketamine

Gabapentin

Lidocaine

Lyrica

Compound in Mediflo Compound

Ketamine PO and IV


Morphine

Clonidine


Citalopram

Amitriptyline

Methadone


Oxycontin

Oxycodone

Nabilone

 

Over the past year my pain has been getting worse, it’s not only in my left arm but it is now moved into my neck, face and the left side of my upper back. I am also breaking out in skin ulcers on my arm that are extremely painful.

 

I have been suffering for so long I don’t know what it is like not to feel pain anymore! I do not have any type of a good quality of life and I am desperate for the foundations help. I feel grateful that I have met Doctors Schwartzman and Kirkpatrick and I am now looking forward to meeting Doctor Cantu. This is why I want to enter the ketamine coma study.

 

Sincerely

Blair Webber
Manitoba, Canada
December 29, 2008

 


VIDEOS

Pre-coma Evaluation ~ 17 minutes ~ 340K

1 Month Post-Coma ~ 18 Minutes ~ 340K

2 Year Post-Coma ~ 12 Minutes

 

 

 

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