I will repost what I posted at another weird site for OPLL
Hello, I am a new member. I read all the posts in a previous locked thread on OPLL. The moderator explained it was too long at 3 1/2 pages. That is funny, because threads on more common ailments run into the hundreds of pages.
We OPLL folks don't have a home. A precious friend of mine died of ALS, another rare disease. In comparison, OPLL discussion have to piggy back on general medical forums like this, while ALS clubs and forums stand alone.
Numbhands, DO NOT tarry. Your, "Noticeable gate," will just get worse, like For-Ever-Healthy described. I second this opinion.
My problem started as a weak right foot. There was some numbing of the outer digits of my hands. The foot weakness increased, and my right leg began collapsing, creating spectacular falls.
I live in Northern California. We are fully covered by Kaiser Permanente. Exhibiting a classic, "Drop Foot," My doctor thought diabetes.
Kaiser will get you into specialists quickly. We are spoiled. A Podiatrist confirmed diabetes. I was put on a strict diet, and took Metaformin. The leg worsened, and other symptoms, like incontinence arose . My sugars, though not normal, were reading in low pre diabetes over a half half year treatment. Because of this, I was sent to a neurologist.
The neurologist tested the electric pulses in my legs, arms, and chest. There were spurious shocks in all places. Another neurologist tested for blocks and found one at my right knee. My skin on my leg was crawling with fasciculations. Their tentative prognosis was for ALS, "Lou Gehrig's Disease." This is a death sentence pure and simple. There inclination at this point was to wait and see for three months.
My symptoms had turned from bad to dangerous. Fasciculations attacked everywhere. My left lung was filling with mucous. I had to go through an exhaling routine to pump it out. My right leg problems had progressed far beyond foot drop. My heart was racing at 120 to 140. I was dropping things, and still falling at a moment's notice, even just standing. My brain was interpreting the imbalance in my back spine as doing the letter C. I was stiffly swinging my right leg around.
I suffered three hospitalizations, two with pneumonia, and one with systemic infection.
I got another appointment with a neurologist during the three month wait and see period. He began wavering on the ALS, and sent me onto a neurosurgeon, Dr. Mermer of Kaiser.
Dr. Mermer took some strength tests, looked at my tongue, and told me calmly, "You do not have ALS." He had looked at the same MRIs the neurologist had looked at and became very suspicious of the strong cervical spine narrowing. He called for a contrasting MRI, a CAT scan, and neck twisting ex-rays.
On the next visit he showed on my MRI, a protuberance pushing into the spine. There was very little fluid passage, none when the spine was stressed. That is when he said, in a matter of fact tone, you have Ossification of Posterior Longitudinal Ligament (OPLL) through most of my neck.
I am Caucasian, with an eighth Native American. Funny how the Japanese population don't post on these OPLL forums. They are the ones who suffer the most.
Dr. Mermer operated May 18. He did the works from the front on C3 to C7. A titanium cage was screwed in. I had absolutely no qualms going in. There is just a 6 centimeter incision scar.
Now, some 6 weeks later, my right knee can bend easily. I can straighten out my right leg with effort. The right foot, comatose before, can just slightly twist right, with the toes elevating a centimeter. I can lift my knee up weakly.
I am in Kaiser therapy now. I have to wake up a few muscles in my thigh, and my ankle. Funny, right after the operation, I could look at my knee, and will it to work, and it did. After all, the brain has lost contact through the constriction of the spine, and relearning simple tasks will be painful, and long. I am happy with the progress so far, though so small. The surgeon says I am ahead of schedule. Numbness of the thighs and hands are intermittent. My heart is calm, and the left lung is mostly mucous free.
At least I am alive. That was iffy in the months before.