Its a good time to be writing this as I can't feel my right leg at the moment and I'm sliding about on the floor trying to get comfy.The issue for me with Chiari is that I have strange, unexplained at times and also really amusing symptoms. You would think that with a skull to small to house your brain you would have crippling headaches and dizziness, Yes this is the case but the list sometimes can be endless. I have had at least 50% of the symptoms I experience my entire life and most are normality to me! I would call that a win!
Ever met someone who has been scared to sneeze since she was little in case her brain fell out? Well she's right here! Ever since I can remember, when I sneeze I have a few moments of panic,Now I'm much better at hiding it and don't outwardly freak out as much now but you will notice me clutch my head before my sneeze even exits my body in preparation.The only way to explain it is the feeling of your brain being pushed out the back of your head through a tiny gap. Now I am affectionately known as sneeze fear by some but in actual fact its not just sneezing that causes this reaction, are you ready for this list? its a goodie - sneezing, laughing, stretching (which is one of my friends favorites),crying, exercising or any kind of exertion, swimming underwater, turning upside on a roller coaster, Shouting, singing (bummer when its your job) and the list is endless.... Not so fun for me but great for everyone around me!
Another favourite of mine is when you try and explain that weird whooshing sound when everything is quiet... you know the one that sounds like a babies heart on an ultra sound and gets super loud when you lie down? No ? apparently this doesn't happen to everyone and I only became aware of this after around 23 years of life!
I'm gonna do a quick fire round of what symptoms I feel on a weekly basis... some funny, some not so but yet again just add to the lovable companion that is having a Chiari.... Are you ready?
Headaches, dizziness and vertigo, tunnel vision, tinnitus, eye pain, neck pain, stiffness, numbness in limbs ( I like to call them Chiari arms and legs.... much easier to explain to friends when you have a limp) back pain, general all over pain in case you haven't caught on to that yet, cramp in every limb or muscle possible, pins and needles, palpitations, hair loss, unexplained organ pain.... believe me the list could go on and I don't experience half of the symptoms that most do.
The moral of this story is its much more than a "brain thing" and that took a long time for me to find out, I thought that the only things affected by my Chiari would be my headaches and vertigo, it wasn't until I met my surgeon and spoke to other people in the same boat as me that I realized this affects so many parts of your body and I'm always interested to hear what strange symptoms people have and where they come from! Every single person I have spoken to with Chiari have a different symptom to add to the list! Bodies are strange things!