Help!!! I need to find a doctor that knows something about OPLL within the US. Has anyone been diagnosed with OPLL and have you found a doctor that knows about the rare spine disease in the west part of the US? It usually affects Japanese culture and there are many doctors in Japan that treat this disease; I am a 42 year old Caucasian who just had anterior decompression and fusion of C5-C7. The pain I have is worse and getting worse with each passing month. I have all of the symptoms from OPLL but cannot find any neurologist or orthopedic surgeon who has dealt with this disease before. My doctor's are guessing (which is really scary) & physical therapists are blaming my posture (which is not the case.) I have contacted several Universities that teach neurologists/orthopedic surgeons with no response (one from UCSF that has treated OPLL before will not return my emails/calls or my primary care doctor's calls and emails.) I truly need to find a doctor that has treated this disease before. I am willing to travel to another state for answers and help. I am afraid that the previous surgery has caused irreversible damage since I have new tremors and loss of strength after the surgery.
I complained about back pain and neck pain for approximately 10 years before my first MRI was done. I went to 6 doctors in those ten years and they told me various excuses from my posture to stress; come to find out in June 2008 I was diagnosed with OPLL and osteophytes through out my spine. If I would have fallen or been involved in a car accident I would have been paralyzed from the shoulders down & to add insult to injury I was told this year that if they discovered this 5-7 years earlier I may not have had permanent nerve damage. So you see, Las Vegas care is not what it should be. Most (not all) are only concerned about getting my money (e.g. If my shoulder and elbow hurt I have to make two appointments; one for the shoulder and one for the elbow. Some doctors will not treat more than one physical complaint per office visit.) I have also been referred to doctors that will not take me because I have had prior surgery.