NS update

[kgperry]

Had an NS appointment (non-Chiari specialist, but most experienced with Chiari surgery here). Said that because the tonsils were rounded and no visible signs of wear on spinal cord, no syrinx in c1-c4 (he did order spine MRI), and no visible sign of crowding or CSF leak/disruption, my symptoms (more neuro: tingling, dizziness, etc. than migraine/headaches) are likely not directly related to the Chiari.

Is this a possibility, or is basically every related to Chiari? Is it possible for Chiari to be asymptomatic with something else causing the symptoms?

[selmaS]

  Yes you are moving in the right Direction there...get copies of ALL testing along with copies of the reports.

[selmaS]

  Hi I know this is very confusing but Chiari can cause much of our symptoms but Drs will tell you it is not Chiari related as in the herniation is not causing the symptom...BUT since we have Chiari we are prone to developing other conditions/issues such as auto immune conditions and connective tissue disorders....which could be responsible for the symptom./s.

You will want to see a true Chiari specialist to help guide you...the Drs that say they have experience but then do not find what is causing the symptoms does not see , know or understand Chiari well enough to help you.JMHO

[kgperry]

That's what I thought. At least I'm moving forward with my imaging . . .