I'm not too sure where to start. My name is Tom I'm 25 years old living in Sydney Australia. I was diagnosed with Arnold Chiari malformation back in 2008 when I started to feel dreamy and off. I got a CT scan that revealed the Chiari at a length of 5-7mm, later MRI's clarified it as 5.6mm. All the doctors I saw at the time dismissed the idea of the Chiari causing my dreamy feeling saying at that length it would only cause headaches which I did not demonstrate. This dreamy state would come and go every few months until a year later when other symptoms began to appear and the dreaminess stuck around for longer periods of time, I started to get fatigue, chronic fatigue that I still have. That fatigue where you need 3+ coffees a day to keep your eyes open. Poor vision, it feels as if my left eye can barely focus amplifying the dreamy feeling, pins and needles in my fingers and on and off sleep apnea. I also have chronic tightness in my upper traps and neck. The one thing that is not consistent is the headaches, I get a migraine once every month or two but it generally originates around my left eye and not the base of my skull. A year ago I saw the "leading" chiari specialist in Sydney who had me undergo a Cine MRI in which I demonstrated unimpacted CSF flow, the specialist once again confirmed he highly doubted it was the Chiari and didn't volunteer any other options for what it could be when I asked. He shrugged his shoulders and off I went to pay another useless doctors bill.
Running out of options I went to see my mothers immunologist(She has a form of systematic lupus) to undergo a zillion tubes of blood to see if anything showed up.. Nothing. Nuclear white blood cell scans.. Nothing. Endoscopy... Nothing. Growing tired of the tests I checked myself out of hospital and decided to continue putting up with the symptoms until I thought of another to approach it.
I don't know if this is common, to have these symptoms and not painful headaches at the base of my skull? I don't know if anyone can recommend anything I should look into, or any doctors in Sydney. Over the past few years every time I save some money it goes to doctors bills and to no avail, I'm tired and down. I have spent years trying to put up with it and get on with my life but there are days when its just too much and I feel pathetic in even saying it.
Thanks all and sorry for the mopey story,