The weird and wonderful chiari malformation symptoms I experience...

It’s 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 too small to house your brain you would have debilitating headaches and dizziness. Yes, this is the case, but the list sometimes can be endless. I have had at least 50 percent 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, 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 it’s not just sneezing that causes this reaction – are you ready for this list? It’s a goodie: sneezing, laughing, stretching (which is one of my friend’s favorites), crying, exercising or any kind of exertion, swimming underwater, turning upside down on a roller coaster, shouting, singing (bummer when it’s your job) and the list is endless… Not so fun for me but great for everyone around me!

Another favorite of mine is when I try and explain that weird whooshing sound when everything is quiet… you know, the one that sounds like a baby’s heart on an ultrasound 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 which symptoms I feel on a weekly basis… some funny, some not so but yet again just add to the lovable companion that is having 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, cramps 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 it’s much more than a “brain thing” and that took a long time for me to find out. I thought 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. 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 has a different symptom to add to the list! Bodies are strange things!

To read more about the wonderful goings on - www.toomuchbraintocontain.com

L