SECOND KETAMINE COMA

(MONTERREY)

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Dear Dr. Kirkpatrick –

Thank you for scheduling Mary for her second ketamine coma treatment in Monterrey.  We are very grateful to have another chance to reverse her RSD.

Mary is 18 years old and has had RSD since she was 12.  She developed RSD in her right ankle after sustaining a mild sprain while playing tennis.  Over the years her RSD spread first to her other leg, then her hands, and then became body-wide.  She was unable to sleep, had full-body allodynia to the point where she was unable to wear regular clothes or be touched by anyone.  A variety of other body-systems began to be affected including painful periods and the onset of orthostatic low blood pressure that caused her to frequently feel dizzy and feel faint.  

Prior to the onset of RSD Mary had been active and athletic, playing soccer, tennis, snowboarding, water skiing and wakeboarding.  The gift RSD has given Mary is that she developed an interest in art, color and crafting.  She is now an accomplished knitter, quilter and jewelry maker.  She has developed and sold a line of jewelry, and knitwear and is in the process of developing a website to sell her creations. Mary has also knitted and donated dozens of knit caps for pediatric cancer patients.   She loves to create colorful wearable goods for others.

Mary's RSD treatments

For five years after the onset of RSD M underwent every RSD treatment in the book:

·      Eight weeks at Seattle Children’s Hospital’s RND program.  The Seattle program, developed by Dr. David Sherry, involved six hours a day of intense physical therapy, aqua therapy, desensitization and counseling. Seattle Children’s reports an incredible 92% success rate.  Unfortunately, Mary fell into the unlucky 8% who did not have long-term success with the program despite four multi-week visits to the program.  After her first 3-week visit, the Seattle program greatly improved Mary's function and got rid of her cold blue leg.  Unfortunately, she never received pain relief.  Each time she returned to the program she got less and less functional improvement.

·      Nine months at UCLA’s Pediatric Pain clinic.  Mary worked with UCLA’s pediatric pain program where she received various medications, physical therapy, counseling and a variety of alternative treatments including:  hypnosis, yoga, cranial sacral massage, acupuncture, biofeedback, meditation, art therapy and Reiki healing.   After nine months neither Mary’s pain nor sleep had improved.

·      Various medications.  Mary tried every drug in the book to reduce pain and promote sleep.  Unfortunately her system is “immune” to the intended benefits of most drugs.   At best she would have no response to the drug.   At worst, she would have no response and suffer side effects that would make her drowsy, nauseous and dizzy.  Drugs she has tried include:  numerous anti-depressants, anti-seizure meds, anti-inflamatory drugs, muscle relaxants, steroids, pamidronate, neurontin, lyrica, topamax and various sleep medications, including several off-label drugs.

·      Nerve Blocks

Mary has had numerous upper and lower nerve blocks, and a series of three successive epidural blocks.  None gave her any pain relief.

·      Other treatments..  Additional treatments Mary has tried include:  therapeutic MRI, cold laser and electro stimulation. 

·      Low-dose ketamine.  When nothing else worked, Mary tried 4-hour low-dose ketamine infusions along with oral ketamine.  Again, low dose ketamine provided no pain relief.

By her junior year, Mary was having serious difficulty staying in school.  She had a 504 disability plan, modified her classes, took some online courses and took few courses at an alternative program in our school district.  Her hands were swelling to the point where she could barely use a computer and could no longer do her craftwork.  To take her SAT’s she was given accommodations to take the tests in two sittings as she could not sit in a chair or fill out the standardized test bubbles for the four plus hours required to take the test.

Graduating from high school and going to college were Mary’s top priority.  Her goal was to major in business and design in preparation for starting a crafting business of her own.  She applied to six colleges and was accepted to all.  Several of them offered her generous scholarships.  The problem was Mary’s  RSD was progressing to the point where it was becoming more difficult to imagine how she would manage in college.

First Coma

After failing to get any relief from low-dose Ketamine, Dr. Robert Schwartzman told us Mary’s best chance was a ketamine coma.  He said she needed the higher dose and the continuous delivery to shut down her RSD symptoms. 

In February of 2008, during her senior year of high school, Mary underwent her first ketamine coma in Saarbruken under Dr. Peter Rohr.  The first coma was certainly no picnic, as she had severe hallucinations during the process, but the results were nothing short of miraculous.  She went into the coma with RSD in four limbs, body-wide allodynia, inability to sleep and was developing various problems such as othostatic low blood pressure. 

She came out of the coma virtually PAIN FREE.  Post-coma all sorts of things began to improve.  Mary’s ALLODYNIA WAS GONE.   She SLEPT THROUGH THE NIGHT and woke refreshed for the first time in years.  Stomach pain, nausea and dizziness disappeared.  Abnormal hair growth went away, sweating stopped, a scar on her wrist where a ganglion cyst was removed healed and she even grew 1.5 inches in the three months before her 18th birthday.

The coma treatment was a tremendous success.  Mary returned home determined to graduate with her class and jumped full-speed into regular life doing things she had not been able to do in years:  she went to the prom, swam in the cold California ocean, drove her car, walked in the sand, pet her dogs and hung out with friends.  She graduated with a 4.0 and attended her graduation ceremony, something she would never have been able to endure pre-coma.  She enrolled in college 400 miles from home as a business and design major.

Pain and RSD symptoms slowly returned

 Dr. Schwartzman told us all the patients who had gone through the coma improved.  The key questions for coma patients are:  1) how much improvement and 2) how long is the improvement sustainable?  We did not expect Mary to be 100% pain free after the coma.  In fact, we told ourselves if she could just get rid of her allodynia and regain the use of her hands, we would consider the treatment a success, as these two RSD symptoms were very isolating and greatly limited her quality of her life.  So when she emerged from the coma completely pain free, we were stunned and immeasurably grateful.

Unfortunately, her pain free status did not hold.  After about a month the pain returned at a very low level, a “2” or “3” in her right ankle, the original injury site.  We understood this was common and could often be addressed with low dose ketamine boosters. 

Ketamine boosters and nerve blocks

Mary has had 14 days of ketamine boosters in 2008 after her return from Germany.  Initially these were low dose 4-hour infusions with Dr. Schwartzman in Philadelphia.  Later she had increasingly higher doses of 4-hour infusions with Dr. Joshua Prager in Los Angeles.  Additionally, she had three days of epidural blocks and a lower lumbar block with Dr. Prager.

Unfortunately, Mary’s pain intensity grew and spread despite these 4-hour ketamine infusions.

5-day continuous infusion

When the 4-hour infusions failed to help, Dr. Schwartzman admitted Mary to Hahnemann hospital for five continuous days of ketamine infusions.  At first the 5-day infusion appeared to be a tremendous success.  18 hours into the infusion, Mary was pain-free and wiggling her toes with a big smile on her face.  Everything went well until the last day when she developed an itchy rash on her arms and her IV’s began to irritate her.  Her infusion was discontinued a half-day early and her pain quickly returned.

Return to Seattle Children’s Hospital

By now, Mary had to take a medical leave of absence from college.  Determined to go back to school in the Spring, Mary decided to focus on increasing her function and resigned herself to living with the pain.  She returned to Seattle Children’s Hospital for their 6-hour a day physical therapy program. This last visit helped improve her fitness and conditioning, but after 6 days in the program, her pain only intensified.

Mary’s current condition

Now 15 months after her first coma, some of Mary’s RSD symptoms are still better than before her first coma,  Other symptoms have fully returned and still others are worse than before the coma. 

·      Sensitivity.  Her allodynia is still mostly gone, although she is becoming increasingly sensitive to light pressure.  She is still able to wear regular clothing and can be touched.  She is sensitive to various stimuli including bright light, smells and strong flavors.  She wears sunglasses outdoors and sometimes inside to protect against bright light.  She can’t tolerate foods with strong flavors or smells such as fish.

·      Pain.  Mary’s pain has increased and is now body-wide.  Her pain has spread to places that did not bother her before Germany, including her upper arms, head and face.  It is now painful for her to brush her hair.

·      Sleep.  Mary’s sleep is as least as bad and possibly worse than before Germany.  She is not able to fall sleep until between 6 and 8 in the morning.  When she does fall asleep she has trouble staying asleep due to increased pain.  She slept wonderfully after the first coma, but has been on a downhill slide for many months..

·      Nausea and dizziness.  The nausea and dizziness Mary experienced prior to her first coma has returned, sometimes dramatically.  She has had multiple episodes where she becomes extremely dizzy, her vision comes and goes, she shakes uncontrollably and feels like she is going to pass out and/or vomit.  The severity of these symptoms is increasing.  She has been evaluated and treated by a cardiologist and a gastroenterologist for these symptoms.  So far there is no other explanation other than advanced RSD.  She has gotten partial relief from her nausea with Previcid.  She will have an endoscopy to rule out any underlying or secondary problems before the second coma.

·      Body changes.  Mary’s fingers are swelling.  She has new hair growth on her arms and wrists and she has increased sweating. Her periods are painful again and intensify other RSD symptoms.

·      Quality of Life.  Mary’s quality of life is rapidly deteriorating.  This rapid decline is one of Mary’s primary motives in having a second ketamine coma.  She has managed to finish up her spring semester, but during the last few months she has not been able to do much more than go to class, complete her assignments and rest in bed.  Much of college life is passing her by.

·      Verve for life.  Despite all her setbacks Mary retains an unbelievable verve for life.  She finished up her semester, with what looks like will be all “A”’s. She works on her website and continues to pursue her crafts to the extent that her hands will allow.  She is designing fabrics on the computer and plans to produce some of her designs.  She has big plans for life, if she can just get her body to go along with her plans.

Coma risks

Mary was aware of the risks going into her first coma, and is aware of the risks going into the second.  She is aware of the recent outcomes in both Mexico and Germany, and despite the risks, feels a second coma is her best chance to get better.  We are aware that about half of second coma patients have done well and the other half have not retained all of their improvements.  We also know this will be the first second coma performed in Monterrey.

Things Mary will do differently after the first coma

·      Reenter slowly.  The main thing Mary will do differently after her second coma is to reduce her activity and not jump back into school as she did after the first coma.  She felt so good after the first coma that she raced to do all of the things she had missed out on.  This time she is taking a medical leave of absence in the fall to give herself time to recover.  A leave of absence from school will not only minimize her physical requirements, but also keep her stress level down.

·      Avoid procedures.  Shortly after her first coma, Mary had a dental procedure that set off pain in her face.  Mary is having comprehensive dental work done before the second coma so she can avoid dental work as long as possible after the second coma.  She is also having a pre-coma endoscopy to rule out non-RSD causes for her nausea and dizziness.  Our goal is to avoid all procedures that might set off her RSD symptoms.

·      Mirror therapy.  We are investigating mirror therapy as a treatment for RSD.  There are several studies out that shown mirror therapy to be effective for phantom limb pain, stroke victims and most recently, early-stage RSD.  In addition to ketamine boosters, we are planning to use mirror therapy to try to keep any post-coma pain at bay.