SECOND KETAMINE COMA
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Dear Dr. Kirkpatrick –
you for scheduling Mary for her second ketamine coma treatment in
Monterrey. We are very grateful to have another chance to reverse
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.
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
· 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
· 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
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.
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.
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.
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.
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.
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.
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
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.
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
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.
80 mg over 4 hours
100 mg over 4 hours
100 mg over 4 hours
150 mg over 4 hours
100 mg over 4 hours
150 mg over 4 hours
300 mg over 4 hours plus epidural block
350 mg over 4 hours plus
350 mg over 4 hours plus
Lower lumbar block with no ketamine?
740 mg over 4 hours, with an initial bolus of 100 mg and 160 mg/hour thereafter?
600 mg over 4 hours, with an initial bolus of 100 mg and 160 mg/hour thereafter
3 days of ketamine (500-750 per day) over hours?
Unfortunately, Mary’s pain intensity grew and spread despite these 4-hour ketamine infusions.
5-day continuous infusion
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
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
Mary’s current condition
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.
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.
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
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
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.
Dr. Kirkpatrick, we are so grateful to you and Dr. Cantu for
giving Mary a second chance at coma therapy and a second chance to
regain her life. We can’t thank you enough and will closely
implement any and all of your advice for maximizing the benefits of
this second coma.
My Very Best Regards,
Kim Powers (Mother)
May 20, 2009