Here's my story
February 29th I wake up with an extreme case of Vertigo, the room just keeps spinning and spinning, I couldnt walk without support and I felt like I was going to puke. I went to the Immediate Care center because I have a blood clotting disorder and i needed to know that I wasn't having a stroke. The dr at immediate care felt the same way I did and wanted to rule out the possibility of stroke and sent me to the ER (there goes the plan on saving $250 on an ER visit, oh well). So I have the MRI to rule out stroke and the dr comes in and says "well you didn't have a stroke but we did find something else" He walked around the room and didn't seem to be able to talk-geesh. Anyways he ends up drawing a picture and explains what the MRI showed. Then says, well you might not have the Chiari, you should have another MRI done. I asked why he thought I might not have the Chiari that the MRI, a picture of my brain, that showed I have it and he responds with well you don't have any of the symptoms. Really???? He never even asked me about symptoms so how the hell would he know that???
So I leave the hospital with a script for another MRI, I am spinning like crazy still and with a diagnosis of something I know absolutely nothing about so I couldn't ask questions, plus like I said I was spinning so I couldn't think clearly.
Moving ahead 2 days. I call to schedule my MRI and find out that I cant schedule the MRI without prior authorization from my insurance. So I call my primary to get her to get the authorization and of course she's on vacation, why wouldn't she be?
So now moving ahead (no pun intended, lol) 4 days. Dr reviews my ER visit reports and won't order the authorization for another MRI and says I have to see a Neurologist. In the meantime I research Chiari and discover that I have MANY symptoms. Things that I have had for a long time without realizing they were at all connected. The symptoms that have stuck out to me the most are: my "eye headaches", stabbing and striking pain down my spine (thought was because I am chubby and out of shape and thus I must be pinching a nerve), dizziness/vertigo (which before I attributed to low blood pressure), losing my words (I just really felt dumb when that would happen, and would think there is something seriously wrong with my head-go figure there is!) and I have pain in my legs. Individually those don't seem to add up to a specific diagnosis but then here it is-Chiari. I have an appt with a neurologist, who I know nothing about. I am not sure what having this diagnosis is going to mean for me. I wonder if it is progressive.
My husband and I have remained it "my" calamari. I wonder if this is going to change my life in some way. or things will continue as they have been and when I can't spit out the words, I will just say "its my calamari" (Chiari) lol.
My neuro appt is next Thursday. I hope I leave the appt with answers and a direction. My fear is that the neuro will know nothing about Chiari and I will have to be refered to yet another dr for further consult. This is all very expensive. I am $290 in already and haven't seen the neuro and haven't talked to a dr yet. good times.
I will let you know what happens.
Till then go have some calamari! :)