Dear Dr. Kirkpatrick,
We would like to begin by thanking you for the compassion and attention that you have shown our daughter, Mary. You were a godsend when we were beginning to despair. We could not have asked for a better human being to be guiding our daughter, Mary, on her road to recovery from RSD. We also thank Dr. Cantu and his team for considering Mary for the Ketamine Coma Trial in Monterrey, Mexico and for continuing your gracious work.
As a child, Mary’s recovery time from normal childhood injuries was far from normal sometimes taking as long as two months to recover from falling on her knee which would normally take less than a week. Much of Mary’s childhood was spent on crutches - otherwise, Mary was a normal child.
In February 2000, Mary fell on the ice and hurt her right knee; at this time, she was diagnosed with RSD. She was treated with physical therapy and it seemed to get better. Additionally, gastrointestinal symptoms began leading to Mary’s diagnosis of Irritable Bowel Syndrome. Then, in April 2003, Mary fell on her knee again was this time given a knee immobilizer to use for a time followed by physical therapy. Mary regained the movement in her knee, but the pain persisted. She described the intense sensation as burning and stabbing and was accompanied by swelling and redness around her knee as the pain began to spread to the rest of her leg and right hip.
Mary underwent multiple x-rays and MRI’s on her leg, hip and pelvis none of which showed any abnormality and her pain continued. Mary suffered a seemingly unrelated injury to her jaw and was unable to open it for almost a year despite her undergoing jaw manipulation under anesthesia and relaxation awareness training to try to relax her jaw muscles. In addition, she was still being treated for her right-side pain and, by September 2005, she was unable to move bend her right leg. She was treated via physical therapy for gait disturbance and jaw immobility.
It was at this time that Mary’s condition took a turn for the worse. In October 2005, Mary woke up unable to move her right leg and in even worse pain except in her right foot which was numb. She describes the pain in many ways including stabbing, burning, crushing, crawling, pins and needles, and many more. Mary was admitted to the hospital where she underwent an epidural block with bupivacaine in the form of a Catheter Spinal Canal Infusion for 3 days in October 2005. Soon after, she was unable to move her left leg. She was no longer able to attend school full time, was in constant pain in which she could find no relief, and was confined to a wheelchair.
Mary hit her right hip on the car door while she was being transported in December 2005 causing her pain and immobility to increase. She again underwent more x-rays, MRI’s and a Three-Phase Bone Scan, which again yielded little to no positive results. All the while her jaw pain continued. Shortly thereafter, she had a Celestone Steroid Injection which resulted in slight improvement and decreased pain during physical therapy.
Then, in February 2005, doctors decided that she needed in-patient rehabilitation and admitted her to a hospital in New York for two months. Upon release, she was told to return to normal activities including gym class. Although, when she returned home her mobility had increased slightly, her pain was greatly exacerbated and she was unable to complete her junior year of high school. Throughout 2006 and the beginning of 2007 since she has been confined to a bed, Mary had frequent lower extremity muscle spasms and visits to the emergency room due to repeated nausea, vomiting, leg pain, chest pains, skin temperature fluctuations, swelling, and shortness of breath. She also had many problems with her feet including loss of toe nails and fungi that has spread to portions of both legs. Battles with both sinus and urinary tract infections are quite frequent for Mary. She received multiple neurological exams, EMGs, MRIs, and x-rays, and various diagnostic work-ups. She was seen by rheumatologists, neurologists, pain specialists, orthopedists, dermatologists, and physical therapists in Boston, New York, and Connecticut. And, for 2 years, was prescribed over one hundred various drugs including narcotics, anti-conversant/ anti-spazmatics, muscle relaxants, sleeping pills, opiates, pain killers, and anti-inflammatories.
Despite her increasing complications and continually increasing pain, Mary was able to graduate high school last spring through sheer determination and just two hours of tutoring a week! The celebration, however, was short-lived. By July, Mary was experiencing left arm pain and restricted movement and a week later she could no longer move either of her arms and was experiencing excruciating pain from the slightest touch or breeze. Pain killers only allowed Mary to relax and sleep but did not alleviate the pain. At this point, Mary was scheduled for a Lumbar Sympathetic Nerve Block for her left leg. Doctors hoped that if it worked on her left leg, it would help her right as well. One day after the nerve block, while recovery from the procedure at home, Mary began to experience what we believed was a seizure. She was unresponsive and was rushed to the emergency room. This activity continued for two hours after which time she stabilized and was admitted to the hospital where she continued to experience frequent “seizure-like” episodes and was given high doses of Methadone for pain and Ativan to stop the activity.
Prior to this hospitalization, Mary was taking aspirin, ibuprofen, carisopridol, bentyl, fentanyl patches, lyrica, and lidocain patches most of which she continued to receive in the hospital. Even with these numerous prescriptions, Mary’s only relief came during sleep and, even then, it was not complete. Soon after admittance, a central line was placed in her neck. During the procedure, she began vomiting violently. Her vomiting spells became more frequent and she was moved to the ICU so she could be more closely monitored. For two weeks, our family members took turns staying by Mary’s side 24 hours a day. During her three week stay in the hospital, she had two EEGs and a CAT Scan as well as a host of other diagnostic tests none of which showed any abnormalities.
Upon leaving the hospital, Mary was flown to Tampa, Florida to be seen by you, Dr. Kirpatrick, and we are forever grateful for your prompt response and accommodation. Throughout Mary’s lifetime she has been told that her pain is all in her head – that it wasn’t real. Finally, Mary and our entire family are able to breathe an incredible sigh of relief that there are doctors out there who understand and can help her. We have tried all reasonable treatments to no avail and traveled to many, many doctors and facilities throughout New England only to be told that nothing can be done to free our daughter from this illness that is robbing her of the best years of her life.
Right now, Mary has no life and no real quality of life – her days consist of watching television, eating, sleeping, and managing her nausea and pain. And, as the days pass by, Mary is beginning to experience pain in her head and stiffening of her neck – the urgency for Mary to receive treatment is increasing with each passing day. There is no other choice for Mary but this study – it is truly our beacon of light and hope!
Prior to October 2005, Mary was an active teenager beginning to formulate and live out her dreams. She was active with the Windsor Locks Fire Department Explorers and looking forward to becoming a firefighter and had hopes of serving in the Coast Guard. She was attending a high school for vocational agriculture which fueled her love of horses and cows, began her involvement in 4H solidifying her desire to one day go to school for wildlife management. Mary was a thriving and energetic young woman in the middle of her driver’s education training and looking forward to her remaining years of high school and her life beyond. Mary is truly courageous and persistent; she found ways to cope with her repetitive injuries that allowed her to continue to participate in the activities she loves.
Thank you again for your compassion and openness to meeting with us and evaluate Mary. We are hopeful that your work and the work of Dr. Cantu and your other colleagues will assist Mary and other RSD patients in reclaiming their lives from this terrible disease.
With heartfelt gratitude,
Margaret and Claudio Remotti
Windsor Locks, Connecticut, USA
November 24, 2007
Video Presentation Pre-Coma
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