Yes, it is helpful to finally communicate with someone who has this condition. I would like to create a web site for OPLL but I haven't the technical skills or the initiative right now. I'll try to answer some of your questions. My case of opll is severe, according to my surgeon, so I've experienced most of the classic symptoms of opll. I believe that the symptoms of my opll began years before my diagnosis in 2003. Medical articles report that one of the symptoms can be urinary incontinence. Apparently, the compression of the cervical spine affects the nerves that control this. I first experienced urinary problems about 1996. By 2003, I was experiencing numbness and tingling in my arms, hands and legs. I was in surgery for 12 hours because my entire cervical spine is affected by opll, and the compression of my spinal cord was severe. Dr. Weinstein and the other doctors who participated in my surgery did a great job.
Other symptoms of opll include: weakness or clumsiness of the upper extremity, numbness or paresthesias of the upper extremity, difficulty with walking, leg weakness, and neck pain. When my surgeon examined me, my knee jerk responses were quite brisk, and he also asked me if I had ever stumbled or fallen, which I had not as of 2003. However, I had a bad fall last year while walking on even pavement, so I can't blame the fall on anything but the opll. Falls can be very dangerous to someone with opll, as well as any trauma to the head because of the risk of damaging the spinal cord. Usually, opll primarily affects the cervical spine, and so far, I don't have any opll in my thoracic or lumbar spine.....THANK GOD!
OPLL has dramatically changed my life because I am quite limited by the fusion of my neck. I can't turn my head very much but I am still able to drive. No more swimming, or active sports. I'm 60 years old, so my lifestyle is quite sedentary now. I also have another rare medical condition that contributes to my sedentary lifestyle but this condition is not related to my opll.
The book that I previously mentioned is titled, "OPLL, Ossification of the Posterior Longitudinal Ligament", second edition, by Yonenobu, Nakamura and Toyama. It was published by Springer in 2006. I found it online and paid over $100 for it but it was a good investment. Since most doctors haven't even heard of opll, I figured I'd better educate myself.
I hope this info. is helpful to you, and also hope you'll stay in touch with me since I don't know anyone else who has this condition. By the way, are you Caucasian? I am, and I've read that there are probably many misdiagnosed Caucasians who have opll. There is great need to educate doctors about opll. That's why I'd like to establish a web site and a forum for people with opll to discuss issues.
All the best to you, Michael,
San Carlos, California (near San Francisco)