I’m tired. I literally left the neurosurgeons eyes silently crying with watery eyes, and completely hid it from my own mother.
Neurosurgeon did not deny the “mild Chiari” that I have, did not deny that my cerebellum is longer than normal, or the movement of the tonsils. On top of this says my neck is bending farther forward and downward more than it should, so he wants testing and imaging on the neck. He also wants to look for a “tethering” in my spine, so he wants a full MRI of my full spine and all angles of my spine, and also likely a spinal tap. Oh, and then tells my mother and I, “I specialize in Pediatric Chiari, thats why all neurosurgeons send adults and kids to me to be treated for this” - that was not comforting or reassuring at all.
I may not be an MD, but I do know MD’s and I know how to find accurate medical research and medical information. “Tethering” in my spine doesn’t explain the over dozen symptoms I have, only symptoms I have that could match it are leg pain and chronic back pain, the rest of the symptoms are all Chiari related. So neurosurgeon wants after testing a high chance for neck and back surgery to fix those issues, but uh, it won’t fix the Chiari, and whats going on with my brain and the other dozen symptoms I have.
Is it me… or do just any doctors of any specialty not care anymore? Do they not listen? I was polite, mature, had the records, the imaging, I typed up every symptoms I have, all the details, how I’m affected… and nope… just say likely another year or two of testing, and then likely neck and back surgery, even though the tethering doesn’t explain my symptoms.
I don’t know if I should just let my symptoms worsen and live like this the rest of my life and never be able to work let alone have a social life again… or keep fighting and going from doctor to doctor…
I don’t want to end up paralyzed or in a wheel chair… this just isn’t right. I’m not against testing for my spine and neck, that’s fine, but to completely ignore the dozen other symptoms and the Chiari… it scares me. I want so bad to give up on seeing doctors and just let this chiari and whatever else is wrong with me take it’s toll… but for some reason I don’t give up and I honestly don’t know why I can’t just give up (ha-ha… literally trying to laugh right now lol). I mean I’m glad I don’t give up and still fight for a good doctor… but I’m tired of it all… 9 months feels like forever now.