Mr. Chairman, thank you for the opportunity to address you this morning on the issue of dubious medical devices and how they are used.
My name is Sheri Spencer. I am a wife and working mother of four from Boise, ID. I am a licensed practical nurse, and I work for four doctors whose help and support during the events I am about to describe has given me the courage and the strength to tell you my story. I am here to tell you of my family’s experience with a questionable medical device and the tragedy that it brought into our lives. I am also here in hopes that something more can be done to ensure that what happened to my family does not happen to others.
Last June, my mother died of cancer. She was 54 years old, and she left behind a husband, nine children, the youngest of whom was only 13 years old, and 15 grandchildren who all miss her and love her very much. I am convinced that the treatment that my mother received from an untested and unproven medical machine contributed to both her failure to seek proper treatment and ultimately to her death. This is her story.
In March 1990, my mother was diagnosed with a lump in her left breast. My mother r.ad always been suspicious of doctors but agreed to have the lump surgically removed at a hospital near her hometown of Orem, Utah. Prior to her surgery, my mother had been in contact with a medical doctor who practiced various forms of alternative cancer therapies. He told my mother to make sure that the surgeon remove and preserve the lump for further investigation and to make sure that the surgeon did not remove any of the surrounding tissue.
The operating surgeon found a tumor the size of a grapefruit, and he also found that the cancer had metastasized into the surrounding tissue. Nevertheless, my mother rejected his treatment recommendations and returned to her alternative therapy after signing a waiver releasing the operating surgeon from all future responsibility. The alternative therapist took the tumor and made what he called an “antiserum” from it and began my mother on a course of alternative anticancer treatments.
In September 1990, while my mother was still receiving the antiserum treatment, she met a man named Evens Rapsomanakis from Las Vegas, NV, who ran a pain clinic in Las Vegas, where he claimed he cured cancer and other diseases such as diabetes. He told my mother that he was not a medical doctor but a scientist and an inventor with a Ph.D. from a Greek university, and that he had developed a new type of energy and electrical therapy while working for the McDonald Douglas Corp.
The energy and the machine that he invented, he said, would entirely eliminate the need for medical doctors. However, when he told McDonald Douglas of his discovery, they fired him. Rapsomanakis also told my mother that the medical profession would have him killed if they knew he had a cure for cancer.
Dr. Rapsomanakis, as he called himself, told my mother than in order to treat her, she would have to have a referral from a practicing health care professional. He told her to visit a Las Vegas chiropractor who would formally refer her to his “Paradise Pain Clinic.” The chiropractor told my mother that she was a prime candidate for a heart attack and referred her to the clinic.
My mother began a course of treatment at the Paradise Pain Clinic in September 1990. The treatments, as I understand them, consisted of hooking her up to a machine that generated low-current electricity by means of electrodes hooked directly to various points of her body as she sat in a reclining chair.
My mother and I did not agree on the value of traditional medical therapies, but she always described her treatments to me be cause of my health care background.
The night of her first treatment she was quite upset and she called me because, as she put it, “I’m bleeding from every place I can.” That didn’t sound right to me, and I encouraged her to go to an emergency room at the hospital. Instead, she called Dr. Rapsomanakis. She told me that Dr. Rapsomanakis told her it was a normal and wonderful thing because the energy was going into her system and it was “exploding” the cancer cells. He told her that the first treatment always traumatizes the system. She did not go to the emergency room.
My mother started out hooked to Dr. Rapsomanakis’ machine for 1 hour a day, 4 days a week, and then a week off. He charged her $100 per session, telling her he was only charging her for the use of the space, the cost of the electricity, and for staff time. He told her he was not charging her for his time because she was his “miracle” patient, in that he had never before cured so developed a cancer.
The treatments soon expanded to 3 hours a day, 6 days a week.
My mother told me she was feeling better, but her looks told a different story. I noticed when I visited with her that she had puffy and infected sores on her back where the electrodes were attached. She was rarely at home in Utah and spent long stretches of time in Las Vegas to be close to the therapy. It was also at this time that I noticed that the skin above her right eye had begun to sag.
Soon after, Dr. Rapsomanakis told my mother that he now had to treat her brain. Then he started treating her above the neck. At this time I thought my mother began acting very differently. Though she said she felt great, she had lost over 60 pounds, she was jaudiced, and she seemed confused at times.
I begged her to see another physician because I thought the cancer was spreading. At one time I had worked for a home health care agency and had taken care of terminally ill patients. She told me that Dr. Rapsomanakis told her that the cancer was now gone but tbat curing her had taken a toll on her body and soon they would begin treatments to rebuild her body.
Mr. Chairman, my mother trusted this man and my whole family wanted her to be happy and well. My urging her to see another loctor caused great pain between us, but I didn’t know what else to do. Try as I might, I could not convince her that she was gettior worse, not better.
On April 19, 1991, Dr. Rapsomanakis called my mother in and told her that she was “completely cured.” He told her that she didn’t, need to come back any more, that she could go home and spend time with her family. My mother told him she still felt and looked sick. He told her that she should be grateful that the cancer was gone, but that he couldn’t do anything about how she looked.
When she came home, she told members of the family that she still felt funny and she could almost feel things “growing inside.”
She wated to go back to Las Vegas for more treatments. She eventually returned to the clinic where she was told she could have four :nore treatments on the energy machine, but that was all. My mothe- was especially distressed because they wouldn’t give her the full 3 hours of treatment. Dr. Rapsomanakis said that he had too many other patients who needed his help.
When she came home, she continued to feel and look bad. Finally, the family demanded that she get a CT scan, if for no other reason than to prove the cancer was gone. The CT scan found that she had a tumor in her skull above the eye that was sagging. She had another tumor the size of a golf ball behind the opposite eye. She had multiple tumors in her breasts and the femur bones in her legs were so full of tumors that they were mottled. The oncologist who analyzed the CT scan told us that there was no hope to reverse the cancers, and after he saw her surgical record, he informed us that her cancer was treatable at the time of her original surgery.
My mother soon lost the ability to walk and to talk. In the first week of June 1991, Dr. Rapsomanakis called to see how my mother was doing. My mother still trusted him, but I was furious. My mother could no longer speak, so I talked to him. I told him the cancer was everywhere and that he had done nothing for her. He told me that he had cured her and that the cancer might show up on the x ray, but that it was dead. He wanted me to put her back on a special diet and to bring her back to the clinic so that he could start a “rejuvenation phase.” I told him that I would never let her set foot in there again, and I hung up on him.
My mother died of cancer on June 25. 1991.
I was very angry, but I didn’t know what to do. The doctors I worked with told me to call the Nevada and Las Vegas Medical Societies. I tried that, but nobody knew who I should report to, and in one case the phones were disconnected. Finally, one of the doctors in my office put me in touch with a Dr. William Jarvis in California, who is a well-known expert on medical quackery. Dr. Jarvis put the FDA in touch with me, and, in fact, 2 weeks ago, I was extensively interviewed by the FDA about this experience. I have been told that the Paradise Pain Clinic has been shut down, but Dr. Rapsomanakis is still out there and, for all I know, he can still continue to “cure” people with his machine.
Mr. Chairman, I am here today because no family should have to go through what my family did. Even today, we do not all agree. Some in my family are grateful to Dr. Rapsomanakis because they don’t think my mother was in any pain when she died. I am not quite sure. This has been hard on all of us, but it has brought us closer together as a family. We are getting better.
In closing, I would like to say that I’ve thought about why my mother fell under this man’s spell. Traditional medicine isn’t perfect, and their machines and treatments don’t always work, either. But I think my mother saw this as a course of treatment and. a way to control her medical destiny. I also think that for the time that my mother was Dr. Rapsomanakis’ “miracle patient,” he treated her with a special care and gave her hope that she did not find in traditional treatments. I hope that traditional doctors and those working on legitimate alternative therapies might learn something from the fear and isolation that caused my mother to reject their help. I hope you on these subcommittees will find ways to ensure that my mother’s story is not repeated in another family.
Thank you for allowing me to tell my story.
Mrs. Spencer presented this testimony at a joint hearing of the U.S. House of Representatives Subcommittee on Regulation, Business Opportunities, and Energy of the Committee on Small Business and the Subcommittee on Health and Long-Term Care of the House Select Committee on Aging. The topic of the hearing was “Recent Trends in Dubious and Quack Medical Devices.”
This article was revised on February 11, 2005.