Hello. I am new here. I wanted to post my story because probably like so many of you, I have had so much frustration with my doctors over the years in trying to figure out if I do have Chiari or not. I apologize for the length.
I first started having dizziness symptoms in Chicago in 2000. I saw two very good doctors, Dr. Timothy Hain and later Dr. Heffez, who is now out of Wisconsin. Dr. Heffez actually did determine that I had Chiari but did not recommend surgery at least not right away. Unfortunately, I went to another doctor to get a second opinion, who was not an expert and he looked at my MRI's in 15 seconds and just outright dismissed my concerns.
I have now lived in Arizona for over 10 years and have had dizziness issues almost every year and a half. I had numerous MRIs done of my brain and had several doctors dismiss Chiari, including a prominent otoneurologist who in 2012 told me he did not think I had this. Of course, I discover NOW that these were not the right type of MRIs
However, upon getting the dizziness again in October 2014, I went back to the same otoneurologist and he now changed his tune when I produced Dr. Heffez's reports that I had found. So here's my current situation.
I finally had the right tests done. I had a static MRI with CineFlow imaging and it said my cerebellar tonsils extend 4mm below the foramen magnum compatible with ectopia. This person who read the imaging said NO CHIARI. I then had a standing MRI of the Brain with flexion and extension from a different place and this person wrote under Impressions- "Pointing of the tonsils consistent with a Chiari 1 malformation.
When I asked my doctor for his verdict, his response was bizarre. His first response was yes you have Chiari but you need to get a MRI of the Brain. He completely forgot what he ordered and I had to explain to him that I did get all the necessary MRI's done and drove down to his office with all the reports in hand and the CD of the film.
I asked him just yesterday, again via email, what is the verdict? His reply -everything's fine. When I asked him about the Chiari, he first replied that I just have benign ectopia. After pointing out the person who read the imaging actually wrote down that I did have Chiari, he changed his response to "well, the report is incomplete."
After asking him why, he stated that the report did not mention the descent of the cerebellar tonsills. I replied well the other report said 4 mm. At my prompting, I asked him, should we get them to reread the results. His response-Sure.
I then asked him about the MRI I had done of my spine, which indicates disc dessication with mild central protusion in C2-C3, C3-C4 and moderate loss of disc signal and disc height at C5-C6, where there is also a peripheral annular tear. His response-All good. My response-Really? That's your answer?
While this doctor is very nice, I am getting very frustrated. He is giving me one word answers and at every stage of the game, I have to ask him, what do I have and what am I supposed to do? Other than him, I don't know who to turn to at this point because nobody out here in AZ seems to be an expert on Chiari AND takes my insurance.
I'm fed up. My general practitioner just diagnosed me having sleep apnea, which I now read may be indicative of me having Chiari. I am going to see a neurosurgeon but his speciality is not Chiari and this is not until April.
Will anybody out of state see me if I don't have the right insurance?
Thanks all for listening. Your thoughts and advice are appreciated.