Michele spent almost four years going from one doctor to another. Each offered treatments, but none of them helped reduce her pain.
With the help of a friend from our church Michele was able to get an appointment with Dr. Robert Schwartzman. He is the founder of the RSD Association, and has spent years researching the condition. There is a three year waiting list to see Dr. Schwartzman. We were excited when Michele got an appointment for November 7, 2005. He examined Michele and confirmed that the RSD had traveled through her body.
Michele had ten days of low dose Ketamine infusions followed by booster treatments in Dr. Schwartzman’s clinic during May, June and July of 2006. Each day she was given an IV of Ketamine, Midazolam, and Clonodine (these drugs helped reduce the side effects of the Ketamine). Unfortunately, the ketamine did not help her because her pain was so bad. We asked how Dr. Schwartzman how he knew the treatment didn’t help her and was told that her feet were so atrophied that the ketamine didn’t even drop one of her toes.
Dr. Schwartzman recommended that Michele go to Germany to be put into a five day Ketamine Coma. This procedure is not available in the USA because it is not FDA approved. The coma is very expensive due to travel costs, and the fluctuation in the value of the American dollar. The cost is approximately $200,000. Additional fees may result due to complications in the procedure, or reactions to the ketamine.
At that time the doctors in Germany were on strike, so we had to wait to go. (for more information about the strike google: German doctors strike) It is required that the hospital is paid in full before the treatment is given. This allowed us time to raise the money required.
The doctor’s strike ended, and in August of 2006 we were notified by Dr. Schwartzman that the board at the Drexel School of Medicine would not approve Michele for the Coma treatment because she was not eighteen years old. The letter also stated that Dr. Schwartzman could no longer care for Michele until she turned 18. We were devastated!!!! Michele’s pain kept getting worse, and the only treatment that could possibly help her was no longer an option.
Michele turned 18 on September 28, 2008. On October 8, 2008, we returned to Pennsylvania for an appointment with Dr. Schwartzman.
His clinical notes for the visit state:
” REVIEW OF SYSTEMS: Reveals nausea, blurred vision, headaches, hyperhidrosis, weight gain, depression, generalized weakness, dizziness, indigestion, vomiting, constipation, sleep architecture is disrupted, she is generally tired. The patient has difficulty with short term memory, She feels drowsy. At times, she has erthema on her skin and at times difficulty with breathing. All twelve systems have been reviewed and are negative.”
“PLAN: I do think this patient would be an excellent candidate for deep coma therapy with Ketamine. Unfortunately, she has had the disease for some time and it is generalized. It is very severe at this point. I do not think that any other treatments will allow her to regain the quality of life.”
Michele had to undergo a series of tests on her heart in-order to be cleared for Germany. The first appointment available was on January 15, 2009. We spent five days in Pennsylvania and Michele was cleared for the Ketamine Coma. We were schedule to go at the end of the month, but the coma program was suspended.
In November of 2008 (two months before Michele was to go to Germany) a New Jersey woman developed a MRSA staff infection two days into the Coma treatment. MRSA is resistant to many antibiotics and it caused so much damage that she can’t use her arms or legs, she needs help breathing and can’t talk. She was quarantined in Germany until a generous acquaintance donated money to have an air ambulance bring her home, to New Jersey. (for more info visit: www.http://www.rsds.org/News/NBCPhiladelphia)
The doctors in Germany claim that they never had MRSA in their hospital, and that the Americans contaminated their hospital. They would not allow any other patients from the USA to have the Ketamine Coma.
Michele was scheduled to go to Germany in January/February of 2009, but the coma program was no longer available. Her grandmother (Mama Vee) was diagnosed with breast cancer in March of 2009. They say things happen for a reason. We now know why we were not allowed to go to Germany. We knew that we belonged with Mama Vee.
Mama Vee worried more about Michele than about her cancer. She would say, “I’m not going anywhere until Michele gets better”. Mama Vee passed away on February 23, 2010 after a courageous battle with cancer. Knowing Mama, she went to Heaven to talk to God, to help get Michele better. We miss her so much, but know she is out of pain and with her husband that she loved very much.
Michele saw Dr. Schwartzman in May of 2010, and he confirmed that her RSD had progressed even more. He knew all her new symptoms. Michele had been getting chest pains, and had to be taken by ambulance to the hospital because she was having heart palpitations. Dr. Schwartzman prescribed medication to help with her chest pain. He told us that Michele was “an incredible young lady. Most people at this stage of RSD is bed ridden with a catheter.” He told us that Michele needed the ketamine coma and we should consider going to Mexico for the treatment.
At first we were not comfortable going to Mexico for medical care, but Michele kept getting worse. We heard that a doctor in California was sending patients to France for the ketamine coma. Michele saw the doctor in June of 2010, but he told us that he was not part of the coma program and that he sent a couple of his worst patients to Dr. Schwartzman. This was different than we were told by his office when we made the appointment. The doctor told us that he does the low dose ketamine, and that insurance paid for it. He administered a higher dose of ketamine over a shorter period of time. (compared to the treatments Michele had in PA in 2006) Insurance does not pay for ketamine treatments, so when the doctor told us they were paying, we decided to have another round of ketamine.
The plan was for Michele to receive 5 days of ketamine IVs. Michele’s first day of ketamine infusion was on Monday, and it was terrible. The doctor did not give Michele medications to help with the side affects. Half way into the treatment, Michele started with hallucinations and woke up wondering where Mama Vee was. Once she woke up, she could not go back to sleep, and the treatment did not relax her. We chose not to have further treatments in CA.
After returning home from CA, we received a bill for $3,500 from the doctor and another bill from the surgical center for $55,600. Insurance does not pay for ketamine treatment. We were upset that we were told it was covered, but reached an agreement and are currently paying monthly payments.
We realized that Mexico was our only option for Michele. We researched the program and found that there was a lot of violence in Mexico due to drug trafficking. We read an article that stated ” Americans were being kidnapped and held for ransom by the drug lords.” We knew Mexico was not where we wanted to go.
We called Dr. Schwartzman’s office and were told that they were not send anyone to Mexico due to the violence.
Michele is scheduled to go into the intensive care unit at Hahnemann Hospital in PA on November 15th to receive five day of ketamine infusions. This is not a cure, but should help reduce her pain until the coma treatment becomes available. Michele will return to PA periodically to receiver booster ketamine IVs to help keep her pain down.
We thank you for your help, support and prayers. Continue to pray that Michele benefits from her treatments.