I had an awful appointment with a neurosurgeon today. I waited six months to get in to see him. He said that it’s not Chiari because my number one complaint isn’t headaches. He said every “true” Chiari patient that comes through his office comes to him because of the headaches. (I get 1-3 headaches a week, pressure at back of head to front, my eyes feel awful pressure and I’m often sick to my stomach. I’ve lived with the headaches for years so felt my new and constant/worsening symptoms were more concerning)
He showed me my MRI and said that yes my tonsils measure at 5mm but again, my numerous symptoms are likely from something else. And what the radiologist identified as a syrinx, isn’t likely one, because my symptoms didn’t start in my hands. He said that I need a follow-up MRI to watch the thing that’s not a syrinx.
He’s the Chiari expert in my area and a second opinion I feel would be futile. He said he’ll send a message to my family doctor and the neurologist I’m set to see in August to have the Chiari and Syringomyelia diagnoses removed from my file.
After years of suffering various symptoms, I felt like I had finally found the puzzle pieces with the Chiari diagnosis. While no one wants to have a condition like Chiari or Syringomyelia, it all added up in the research I did online. There was relief in knowing my condition had a name. Now I’m back at square one with a myriad of symptoms, no answers, low quality of life and another two months to go before my neurology appointment.