I’m wondering if, after being diagnosed with chiari, if anyone was told that their symptoms were atypical to Chiari-malformations and needed further testing to rule out other things before getting into discussions on surgery??
I was just at my first appointment today and the neurosurgeon told me that I do have Chiari but that my symptoms are atypical. They told me that because of my vision issues and the type of headaches I get that it could be related to intracranial pressure and migraine/tension headaches… I’m being sent to a neuro ophthalmologist and the headache clinic for further testing… I still don’t have the answers I want… Has anyone else been through this? Thanks
I was originally diagnosed with IIH after experiencing vision disturbances and headaches. The MRI showed that I had a Chiari Malformation, but the pressure from my LP was high. I was treated for IIH for about a year and a half with weight loss (yay!) and diamox (boo!). Then I started to have dizzy spells that my doctors initially thought were related to the diamox. My primary referred me to a neuro ophthalmologist because my neurologist was not being very helpful. The neuro ophthalmologist did a bunch of tests, and then told me that she was not convinced that I had IIH. She thought my symptoms were related to my Chiari, and has referred me to a neurosurgeon to make the official call. Neurosurgeons seem to be in high demand, so I am in the midst of a 2 month wait for that appointment.
So, I guess I would say that the neuro ophthalmologist may be able to help you start to figure this out.
Yeah, my neurologist didn’t think it was Chiari causing my symptoms, but I think that’s because he doesn’t know the condition. The doctor who read my MRI was the one who recognized it. After I researched it, I feel like all of my recent symptoms are related to it. For me, it resembles Fibromyalgia but without the pain. I don’t get headaches much, but I do have weird pressure sensations in my head. Anyways, I’ve seen 5 doctors now, none of them have given me any confidence in them understanding this condition, and I see a neurosurgeon next month. Hang in there, this ride is a long and confusing one.