"Chiari Runaround" should be listed as another Chiari ailment

[amisoup]

So... went to Mayo and saw a NS, finally. My herniation measurement has grown since May from one MRI to the next, and the MRI was read by the same person (was 4mm and 10mm, now 5 and 12). I was told that my debilitating migraines were not caused by Chiari and that I would be best going to a headache specialist to try to find the "right cocktail" of meds. I am 5mm on the left and 12mm on the right with "minimal" CSF flow to the posterior of the brain and around the cerebellar tonsils.

I am going to see Dr. Trumble in Orlando on Monday, and HOPEFULLY my FOURTH opinion will at least concede that this pain and the numb arms, legs, and everything else is Chiari related. UGHH!

Thanks for letting me vent.

[selmaS]

  Hi...I am so sorry u went thru the royal run around,.....as I have said so many times it just seems part of the whole chiari dx experience...we all go thru it..some more so then others.

I will say this too, where u went may have a great rep for many medical issues, but chiari so far has not been up on top of the list...everyone seems disappointed.This is y we say to for a true chiari specialist...not where u go....the dr will make the diff.

  Good luck with this next Dr.


And vent all u need to.....otherwise holding it  in will only make u feel worse.

  Keep us posted : )

   "selma"

[cash242]

I think that is a great ailment!! Best of luck!