Our Stories: Alternative Therapy Brings Relief
By Michele Langstaff
I have had RSD for eight years. My initial injury was a repetitive strain injury from overuse of the computer. However, I was unable to get an accurate diagnosis for one and a half years, at which time I was finally diagnosed with TOS (Thoracic Outlet Syndrome) and RSD (stage 2), both bilaterally in my upper extremities.
After numerous attempts at conservative therapies, and visits to more than 30 physicians, I had bilateral first rib resections and T2 ganglion sympathectomies. Shortly before having the second side operated on, the RSD migrated to both of my feet. The surgeries definitely improved the TOS (although it did not resolve the problem 100%), and completely eradicated the RSD in my upper body for a limited period of time. However, six months after completion of the second set of surgeries, the RSD returned to my upper body, and got progressively worse over time. Numerous hospitalizations with extensive nerve blocks helped only mildly.
Under Dr. Robert Schwartzman’s care, I was taking Neurontin® and Nortriptyline, which helped me significantly. They allowed a stepped-up physical therapy program with Frank Angiolillo at Penn Therapy and Fitness at Arcadia College. This was combined with twice-weekly massage therapy sessions. However, I was becoming more and more worn down, more pain ridden, and able to do less and less. In short, clearly heading in the wrong direction, despite the fact that I was receiving the best possible conventional RSD treatment.
At this time, I heard about Dr. Kurt Vreeland, a holistic physician in Norwich, Vermont, who deals with hard-to-treat medical cases from all over the world. He believes in looking at a person’s condition, at the most basic level (the cellular level), and building them up from there. He is technically a chiropractic neurologist (he does not perform chiropractic manipulations in the typical sense), and has extensive knowledge about the nervous system in general and RSD specifically. I was impressed with his understanding of RSD, but perhaps more importantly, inspired by his personal manner, his obvious compassion, and his knowledge of where we would begin based on what I had already done.
After three years I have seen dramatic improvement in my RSD and overall health using Live Blood Cell Analysis, Applied Kinesiology and a host of other approaches. I was initially on a regimen to shore up my immune system, which was in a state of collapse when I first started seeing him. Through numerous holistic supplements (geared to helping my nervous system reprogram itself to normal, balanced settings), homeopathy, specific exercises, diet, lifestyle adjustments, in conjunction with my ongoing physical therapy and regular visits to my RSD specialist and massage therapist, and professional counseling, my improvement has been staggering.
When I began this program I was taking 2,700 mg of Neurontin daily. I would have taken more, but at that dosage I was on the verge of passing out all the time and had tremendous difficulty completing sentences. After a very slow and methodical reduction, I am now on 100-300 mg of Neurontin daily, and in the process of trying to break off from it completely. My activity level has increased dramatically. I am in much better shape than I ever dared hope to be, and Dr. Schwartzman has said he had never seen anyone with RSD improve so much.
I continue to work daily on a variety of exercises that are intended to reprogram my nervous system. Conventional doctors have told me that this is not possible, yet I am improving.There is no question that I still have RSD. I must deal with it daily. But I have a much better understanding of what to do, how to cope, and how I can control, as much as possible, my daily life and how it is impacted by RSD. I use the skills I have learned from the medical team that work most effectively for me; everything from knowing how and when to regulate my behavior and activities in an effort to outright prevent serious flare-ups, or control them once started, by diminishing sensory overload, utilizing nerve glides, exercise, meditation, deep breathing, guided visualization, to adjusting my diet, not falling back on old definitions (of success, fulfillment, etc.), getting immediate help from my physical therapist or massage therapist, regulating my medication as necessary while continuing the protocol laid forth by Dr. Vreeland. All this remains a part of my life, each and every day. I fully intend to utilize these widely varying modalities and continue down this path of control and improvement.
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