My daughter Sue is 19 years old and has been suffering from RSD for over four years.  It all began in May of 2004, when she fell at our home in Connecticut, injuring her right knee.  X-rays and MRIs showed only a sprain and a bruise but she experienced severe, shooting pain.  She was sent to physical therapy but continued to complain of extreme pain. 

 

When her pain increased and she became increasingly debilitated by it we took her to a specialized pain clinic, where she was diagnosed with CRPS (RSD).  She was entered into a six-week pain management program.  She was given various medications of increasing strength, including opioids, PT, OT and psychological counseling.  At the end of the six weeks, she had not improved and the clinic had no follow-up.  Later, she tried more PT, including water therapy at another facility.  None of this helped her pain.

 

A rheumatologist sent us to an anesthesiologist to see about getting nerve blocks.  This specialist said that he did not believe that nerve blocks would help at this point.  By this time, in addition to the pain, the RSD was manifesting as red, burning skin radiating from the right knee and now mirroring at times on the left knee.  Despite her pain, Sue kept forcing herself to school every day, moving around on crutches, collapsing at home at the end of it. 

 

Sometime in the spring of 2006, Sue started putting ice on her knee, as this had been suggested by PT as possibly helpful.  Unfortunately, she began needing more and more and in November 2006 she was hospitalized with cellulitis in her right leg due overuse of ice.  In the hospital she was given pain meds by IV but it did not help the pain.  No longer able to use the ice after this, she stopped attending school due to unbearable pain. Despite this, she tried to continue her studies at home, filled out an early application for university and was accepted at the school of her choice, the University of Illinois Urbana-Champaign.  However, due to the pain, she was unable to finish her senior year and did not enter college.  This is the greatest disappointment for Sue who has a true love of learning and is highly gifted intellectually (despite the fact that she wrote her SAT with the RSD pain and cellulitis just before entering the hospital, she still scored above the 90th percentile).

 

Since that time, Sue has been mostly homebound, although for a year she consulted with a therapist to learn relaxation, self-hypnosis and other therapeutic techniques.  She has explored the idea of an implanted electronic stimulation device.   She decided that this is not a good option, as her experience is that any small trauma to her body spreads the RSD, so surgery does not seem reasonable.  We have seen the truth of this because recently she needed a root canal and spent weeks with a severely inflamed mouth due to the injections the dentist gave her.  This seems to have also spread the RSD to her face.

 

Since the winter of 2008, Sue’s RSD has spread further and her right leg has become almost constantly red and swollen, making it almost impossible to move.  She has become almost completely bedridden.  She is in pain all the time.  Her right leg from toes to hip is searing with pain, burns with red patches, and cannot be touched without excruciating pain.  Nothing can touch her leg – no sheet, wind or water without great pain.  The RSD has spread to her other leg and now often to her arms and her face.  She is exquisitely sensitive to heat and light, so her room is kept always cold and dark.  Due to her inability to move, her overall health is degenerating in multiple ways, including by causing her to gain a great deal of weight.

 

In April of this year, we made a very difficult trip to Philadelphia to see Dr. Schwartzman.  He was very kind and immediately stated that he does not see any possible relief for Sue’s RSD except for the ketamine coma.  

 

At this point, although she has concerns about the risks and side-effects of the ketamine coma, Sue believes that it is the only hope for possible relief for at least some of her pain.

 

Before this accident, Sue was an active, outgoing teenager.  She was a voracious reader, an outstanding student, and she loved to travel to distant places with our family.  She rode horses, played soccer, and judo, and spent more time in the water than anyone I have ever known.  Because of this disease, just as all of her friends worlds’ were expanding, her world contracted to an isolated dark, cold room.  One of the cruelest aspects of this disease is that the pain has robbed her of the ability to even read a book.  We only wish that this treatment could at least allow her to reclaim the ability to read, to move around, to see friends and engage in some meaningful activities.

 

We are so grateful to you, Dr. Kirkpatrick, to Dr. Schwartzman and to Dr. Cantu in Mexico who are giving severely afflicted RSD patients like our daughter some hope for relief in an otherwise hopeless situation.  

 

Sincerely,

 

Ingrid (Sue’s Mom)

January 8, 2009

Hartford, Connecticut USA