| HOME |
FIND A SPECIALIST |
CONNECT TO OTHER PATIENTS |
RESEARCH |
|
REFERENCES and RESOURCES |
ALTERNATIVES | SCOLIOSIS BOOKS | ABOUT ME |
|
Me and My Scoliosis Story |
|
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 fairly significant thoracolumbar curves.
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 I had been brain-washed by several physicians who had told me that I should avoid spine surgery at all costs. 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 11+ hours of anterior and posterior surgery to reduce my curves and fuse my spine between T4 and L3. 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 degeneration in the first few discs below my fusion. I chose to try physical therapy again. Thanks to a great physical therapist (Amy Selinger), I managed to avoid additional surgery for quite awhile. But, additional degeneration eventually caught up with me. Daily leg pain finally drove me back to surgery. In January, 2011, Sig Berven and Serena Hu did 8 more hours of surgery to extend my fusion to the sacrum, with fixation to my pelvis. My recovery has been nothing short of miraculous, and I'm feeling really great. I honestly don't think I've been this pain free for at least 15 years. I've been involved with the world of scoliosis for over twenty years. For many years, I ran a support group for people with scoliosis. I have also moderated the National Scoliosis Foundation forums for many years. Prior to that I moderated the MIT Scoliosis listserv. In January 2010, I gave up on a lucrative career that had become a little boring, and went to work in the UCSF Department of Orthopaedic Surgery, where I do research in spinal surgery outcomes. It's a really great gig. I love my job, and I love meeting and talking to patients, and hopefully making a difference in their lives. I'm a living, breathing example of the miracle of spine surgery. I actually have a life outside of scoliosis as well. I'm a long-time volunteer at the Peninsula Humane Society and SPCA in San Mateo and Burlingame, California. Prior to my most recent surgery, I helped out in dog training classes, teaching basic obedience and Canine Good Citizen classes. Unfortunately, surgery has left me with a little difficulty in terms of getting down on the floor to train puppies, but I hope to get back to it very soon. Along with the picture of me, and my xrays, the photos below include some of the pets that I've loved. Hillary, the beautiful Somali cat, died of a brain tumor in 2010. I lost both Tony and Tina, the chinchillas, in 2010 as well. Only Bill is left. He's as old as dirt, but he's still the best cat ever to grace this world.
|