I would have never guessed I'd be one of these people....but during my search for answers I came across this video... if you can spare 25 or so minutes it's pretty interesting...
Mystery Diagnosis Chiari Video
This girl could have been telling my story...from the stomach aches, headaches, heart condition, low blood pressure, dizziness.....I never got as bad as this young lady but my story is shockingly similar. Lucky, for me I already had a diagnosis and mine was the same....Chiari 1 and a retroflexed odontoid (this is another name for Basilar Invagination). I don't have her underlying condition elders dineros.
So, there was a doctor somewhere that knew what this was! This was the piece I was missing and would never have known if it hadn't been for my friend google and discovery health :) The search was on....
Do you know what you get when you google "best chiari doctors"?
About 272,000 results (0.21 seconds)
It took me several weeks of going through forums and medical sites before I found THE one who I would try. The one I would fly across the country for and the one who would be my last hope for answers....If you know me I research EVERYTHING!...consumer reports is your friend people! I researched my vacuum, car, camera, dentist, doctors, dog breed, furniture....you name it I researched it before I bought. So finding someone I trust with my life was no small task.
One name kept coming up and always seemed to have good reviews so I called Dr. Oro's office at the Chiari Care center to see if he was smart enough to handle my uniqueness....chiari is one thing but Basilar Invagination was a whole different story. But he said he could help and I was desperate to hear those words.
This video was on his web site and I was sold....
So to end this post I didn't think I would be like the people on Mystery Diagnosis. I didn't think I would have to fly across the country to see a medical specialist for a rare brain condition.
Life never quite turns out like you expect it...
