Just out of curiosity - when were you all diagnosed? It seems like most of the people I talk to were diagnosed within the last 5 years or so, and that strikes me as odd.
I was diagnosed in 1998. I was 16, and it took 14 years for my symptoms to interfere with my life enough to require surgery. At least as far as the various doctors involved were concerned.
I was diagnosed officially in Nov 2012. However, when I was gathering up all my medical records, I found that a radiologist noted that I had Chiari back in 2004, and I was never informed by my neurologist. My NS is ready to schedule surgery, but right now looking into the tethered cord issue. Hope this answered your question.
I was just diagnosed last October, after becoming symptomatic post whiplash injury from a car accident. I never had any symptoms prior to the accident. I then had surgery in January this year.
My son 14yr old son was diagnosed this last April when doing an MRI for his pituitary gland. When we researched Chiari it led me to get my medical records for a hospital stay 2 yrs ago. I spent 4days in the stroke unit testing and Neurologist on call asked if I ever get headaches, I said no and that was end of his questions. They said it was anxiety or a possible TIA. I was never referred to a NS. My primary care finally got me to see a NS just a few weeks ago.
I was diagnosed last year when I was 34. I have been to countless doctors over the years and no one ever thought to do an MRI. I just got brushed off with vague diagnoses like chronic fatigue and fibromyalgia.
I was diagnosed in 1984, at 18 years old. I had symptoms all of my life but they were dismissed. I lived in a very rural state with poor medical care. I was called a hypochondriac trying to gain attention, a drug seeker (even though I can not take narcotics at all), been told it was all psychological issues and flat out called a faker and liar. I finally found a neurosurgeon that knew about Chiari in 2006 and had decompression surgery days later (because I had no CSF flow at all and I was wheelchair bound and lost much of my vision). He was not a Chiari “specialist” but was the only option I had at the time. I had a very smooth and quick recovery. Some of my symptoms have returned but the surgeon did not know to take into account other possibilities like EDS. Which I tested positive for last year. It has been a long road to travel but I have made it and continue to fight every day.