I was diagnosed with scoliosis when I was 15, but my parents opted to not have it treated. As the years went on, I completely forgot I even had it. I never bothered me. I never had back pain of any kind. Fast forward to Christmas Eve 2004. I was wrapping presents in my bedroom. Suddenly, out of nowhere, I had the most excruciating pain of my life. It started at the left of my spine, went under my shoulder blade, and wrapped around to the front of my rib cage. It literally took my breath away. I couldn't move, I couldn't breathe. So my husband rushed me to the ER. They took x-rays, ran some tests, and they told me it looked like I had fractured my back. So they referred me to an internist. I got in to see her almost immediately. By now, the pain "attacks" as I called them were becoming frequent and unbearable. She couldn't find the problem, so she sent me to a neurosurgeon who specialized in spine issues. He diagnosed me with SM. I remember thinking "syringomywhatia?" So I got a second opinion, and then a third. Everyone told me the same thing. That I had SM, that there wasn't really anything that could be done about it until my largest syrinx got up to 6mm (it's at 5 now) and to just go to pain management so I could get on with my life.
I was lucky in that it only took 2 months from the onset of my symptoms until I had a proper diagnosis. And I'm also lucky because all the doctors I see are familiar with SM and know how painful and debilitating it actually is. My life is now full of procedures and pain meds, but at least I can manage the pain now. I try to live my life to the fullest, although it sometimes seems impossible.