Chiari Online Support Group

Recently diagnosed

Hi!

I’m newly diagnosed and looking for answers and information. I’ve been experiencing horrible occipital headaches along with neck pain, back and shoulder pain, ear pain and ringing, as well as double vision, dizziness and loss of concentration for the last 3-4 years. My family doc claimed it was another form of migraines as I’ve suffered from classic migraines with aura since I was 15. But my imitrex didn’t seem to help much.

I happen to work in the operating room and explained my symptoms to a NS. He ordered a MRI and agreed to see me. He was convinced I had a bone spur. The MRI showed 5mm of cerebellar tonsillar ectopia. Also slight disc bulge at C6-C7. The NS said I have mild Chiari malformation but seems to think the 5mm ectopia isn’t a big deal nor is it the cause of all my symptoms. He referred me to a heachache specialist for what he believes are occipital migraines.

I’m wondering if I should see if the headache people can help me or if I need to find a specialist? I’m not one to rush into surgery, but I want to be sure the chiari is not being ignored either. Any thoughts would be appreciated. Also I’m in MN and from what I can tell our only chiari specialists are for children. Anyone have a recommendation?

Hi, and welcome!

Now, granted this is just my oppinion, I would get a second oppinion from a neurologist, if you can!

If you are in this much pain and it’s affecting your day to day life, then a second oppinion would be in order! Chiari is no walk in the park, albeit if you are actually suffering from occipital headaches, then that is not good either! If ever you are second guessing yourself or you feel there could be more to the " puzzle" so to speak, then don’t sell yourself short! We are all here for you!