Chiari Zero ?

[alaa_afaneh]

Hi everyone,
I've been diagnose with low lying cerebellum at the base of the foremen magnum, no syrinx thankfully,
honestly I'm not sure if I was born with it or it's due to an accident or sth, but I used to have daily headaches which lead to an mri for the head and neck and that's it,
now I have headaches every once in a while, not sure they are due to stress or my low lying cerebellum,
I am not going to Drs obviously and making more and more tests because I came to a realization that I'm wasting my and their time,
and I prefer to live the way I am rather than having my skull cracked open, unless and hopefully not it extremely  aggravates and I can't walk on my feet.
I got a couple of concerns that I can't really find solutions to..
1) I can produce a clicking sound voluntarily from my ears that I couldnt do before, its by moving my soft palate (roof of my throat) my ears start clicking, I found that its called (palatal myoclonus), the problem with palatal myoclonus thing is that it can happen alot of the time and involuntarily, my ears clicking alone whenever I move my head to the right or left.
Does this happen with people of chiari, I mean the ear clicking malatal myoclonus thing ?
2) Can exercising like running for instance aggravate my problem ?
3) I dont have any other symptoms of chiari other than the headache and the ears clicking, should I be worried ?!
Thanks Alot!

[selmaS]

Hi and welcome to the Chiari forum.

I appreciate you letting us know how you feel regarding surgery...and for some it is not an option while for others it is.....we are all different and our symptoms due to Chiari can also be different depending on what other co-morbid conditions we may have.
As for not having a syrinx, all you know is you do not have one in the cervical spine if all you had was a brain MRI and a neck (cervical spine) MRI....but a syrinx can form in the thoracic and lumbar spine too.....

As for the clicking I am not sure if that could be EDS related which is a related condition to Chiari....EDS- Ehlers-Danlos Syndrome is a connective tissue disorder....not sure how it could impact the soft palate....

Not sure running may or may not aggravate the clicking....for those with Chiari some activities can aggravate or trigger symptoms to worsen....so we say try things slowly and see how it goes, if symptoms flare, cut back.

Worrying won't help anything but it can cause more issues....so try not to stress over what may or may not happen....take things slowly and let your Dr know if you have a change in symptoms or acquire new ones.

Know you are not alone and can ask us about this condition or related conditions....and we will try to answer the best we can.