Mostly discouraged because I don’t even know if Chiari malformation is my problem. I had an MRi in March because of dizziness (which was gone by the time I had the MRI as it took 2 months to get it!) but in the report there was an incidental finding of a borderline Chiara which was “stable compared to prior study.” Prior MRI was in Feb of 2015 due to problems with dysphagia and there is no mention on that report of Chiari. So I had an MRI in 2015 and 2018, both for different problems either of which may or may not be caused by Chiara. No matter what, none of the medical people I’ve seen or who have read the report seem to think there is a connection or problem.
I went back to my ENT last week because of sudden onset of extreme dizziness, unsteadiness, headache, hyperacusis, etc. She diagnosed me with vestibular migraine and said to f/u with neurologist. I asked her for a copy of the MRI report (from 4 months ago) and it wasn’t until I got home and read it that I saw I had a borderline Chiara malformation (that was a new one for me!). The next day I had an excruciating headache and neckache and went to see my pcp, he prescribed a muscle relaxant and sent me on my way. I think that may have been caused by the ent testing me for bppv and therefore turning my head sharply to each side for a minute, always a very difficult and uncomfortable position for me.
My head and neck are somewhat better but I have other symptoms that nothing helps - some of these are long-term ongoing, others are new just in the last week or two since my recent episode of dizziness.
remnants of bad headache
hurts behind eyes
stiff neck, limited rom
motion sick feeling
some difficulty talking, words don’t come out right
brisk deep tendon relexes
feels like I am walking on pillows (new problem)
hyperacusis - extremely sensitive to noises, especially the typical noises of doing dishes (new problem)
strange sensation when touching certain parts of the left side of my face (kind of like a mild painless electrical shock) (new problem)
off and on nausea
cannot walk and talk at the same time, makes me feel very dizzy (new problem)
vertigo (not currently but have had several spells in the past, nothing recent)
much difficulty walking, legs and hips feel like they don’t want to work, this has been going on since Jan of this year but just in the last week has become much worse. Hip and knee xrays were negative for anything.
difficulty swallowing, problem is with liquids and in initiating the swallow, ongoing problem which was the reason for my MRI in 2015.
esophageal problems that I don’t know even how to explain, just weird sensation that makes me feel like I’m going to gag.
I’ve been worked up and have had many tests. I saw the neurologist 3 times over a year and half period and he found my deep tendon reflexes were very brisk. He was slightly concerned a first but as there was no change over the next two visits he said “anxiety” and no need for further testing.
I know darn well my problems aren’t from anxiety (though yes, they are now creating anxiety). My neurology appt (new neurologist) isn’t for another two months (and no, I can’t call and demand to be seen sooner). Until that time I don’t know what to do. I’m frustrated and upset because I don’t know how I can even go to work tomorrow. I don’t have the kind of job that I can easily miss. I’m scared because I don’t know what is wrong. No one seems to think Chiara is my problem, so if it isn’t then what could it be? I was diagnosed with vestibular migraine or menieres or labyrinthitis (their best guess) 10-12 years ago, that might be right or might not.
I really don’t expect anyone here to have the magic answer, mostly I’m just venting because I’m so frustrated and feeling this way for so long without any real answers. I’ve had 3 doctor visits to two doctors in the last week and their diagnosis was more of a shoulder shrug than anything else.