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ALTERNATIVES SCOLIOSIS BOOKS ABOUT ME


My Scoliosis Story

My Interests in Scoliosis
and Everything Else

My scoliosis was not diagnosed until I was in my late 30's. I had always had medical professionals say "you have a little bit of scoliosis," and I believed them. For some reason, I was never school screened. I started having pain and loss of function, mostly with my neck, in my late 30's. So I went to a chiropractor, who took Xrays. To my surprise, he found a fairly significant S-curve.

I went to four different chiropractors over the next five years. Although I finally got some relief for my neck pain, my back pain kept getting worse. In addition to chiropractic, I also tried several acupuncturists, physical therapy and drugs during this period. Nothing helped, and my back pain had begun to affect my life. I couldn't stand or walk comfortably for more than 10-15 minutes at a time.

I had never wanted to see an orthopaedist because several doctors had told me the only fix for scoliosis was surgery, and they always seemed to steer me away from that option.

After prodding from several friends, I finally went to see a scoliosis specialist, John Gray, when I was 40. He measured my curves at 42 and 56 degrees. He suggested surgery to stop the progression and return function. When I balked at that, Dr. Gray suggested we watch the curves for a year or two to see if it progressed. When I saw him the following year, the curves had each progressed about five degrees, and I was having more pain and loss of function. We started talking seriously about surgery. I started doing a lot of research. I joined a support group and met a lot of adults who were either contemplating surgery, had surgery within the last year or so, and some who, to this day, haven't had surgery. I talked to them all. I read everything I could about adult scoliosis surgery. I saw two other surgeons, who agreed with Dr. Gray.

I got my life together and in February, 1992, I had anterior and posterior surgery. Both surgeries were performed in one day (about 11 hrs. of surgery!). Dr. Gray put Zielke instrumentation in anteriorally and CD rods posteriorally. I'm fused from T4 to L3. The curves were both down to about 10 degrees after surgery.

The first month or two of recovery were pretty dreadful. I was very sorry that I had made the decision to have surgery. The pain I had before surgery was completely gone, but the surgery created entirely new pains. Fortunately, little by little, the pain disappeared and I regained most of the function that I had lost.

In 1999, after realizing that my lower back pain was returning, I was diagnosed with a bad disc at the first free joint below my fusion. I chose to try physical therapy again. Thanks to a great physical therapist (Amy Selinger), I've managed to avoid additional surgery. I'm pretty certain that I'll eventually have to have my fusion extended by one level (or maybe an artificial disc replacement if I'm lucky). For now, although I still have pain, I haven't lost much function.

When I was learning about scoliosis prior to my scoliosis surgery, I started attending local scoliosis support group meetings. Eventually, I started helping to run the group. After a particularly grueling effort to produce a spine conference, the support group broke up.

When the World Wide Web made it's appearance, I was dismayed to see so much bad information on scoliosis. I found the MIT Scoliosis Lists, the first email list for scoliosis patients, which had been founded by Rich Lethin, and got involved again. Before I knew it, I had recreated the support group, and was spending a lot of time talking to other patients and learning more about the disease.

I live in the San Francisco Bay Area, where there is an abundance of excellent scoliosis specialists. Many of them have taken me under their wings, and have helped me learn about the treatment of scoliosis.

I actually have a life outside of scoliosis as well. To earn a living, I'm the U.S. Catalog Marketing Manager at Art.com/AllPosters. I'm also a long-time volunteer at the Peninsula Humane Society in San Mateo, California. My current volunteer duty is helping out in dog training classes. For fun, I like to play No Limit Texas Holdem poker, although I'm not much of a gambler.

I live with two cats (Bill and Hillary) and two chinchillas (Tony and Tina).


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