The story of Ondine
A decade ago I was diagnosed with a brain malformation, yeah funny when you know me « we all knew she was wierd «
Little did I know that « Arnie » was going to become a huge part of my life.
CM or Chiari Malformation is the descent of your cerebral tonsils ( cerebellum) in the foramen magnum ( hole at the base of your skull) which prevents CSF to flow properly or completely and can also result in compression of the brain stem. Most cases can be asymptomatic and accidental findings, but that wasn’t my case. I won the lottery with Arnie, he has a full range of symptoms going from neuropathy, dysphagia, loss of feeling in extremities, coordination impairment, visual impairment ( nystagmus, tunnel vision…), debilitating headaches caused by PCH ( Valsalva)…
Initially I was told that this accidental finding was absolutely nothing and was set on my way. After a few years of inexplicable symptoms I was finally referred to a specialist ( neurosurgeon ) and was offered surgery in 2019 as course of « treatment » ( no cures exist other that surgery, which is not a success guarantee).
Fast forward to 2023, Arnie still progressed after surgery ( naughty brain) , likes to make his presence known and remind me daily that he will always be by my side.
Has it been rough, yes ! But you learn how to get back up after each fall, flare up and grow stronger !!
Am I supported by friends and family? Not as I had hoped unfortunately ! But the ones that chose to be there are simply amazing and I couldn’t do it without them !
Does Arnie make me want to quit sometimes? Well.. he ´s a sucker for drama but I won’t let him win.
Do I know what to do with my life now that it’s drastically changed ? Absolutely not, still fairly new and getting used to all the changes, but I know that I will find a new path with great adventures and new challenges. After all I’m only 41.
Do I wish that there was more research done on CM in Belgium and better grasp from medical teams ? Yes most definitely, but they need more exposure, patients and drs willing to help move forward with it all.
This is why I want Arnie to be known, not for myself, but for people like me, who need help with diagnosis and care.
Make Arnie visible !!!
After all, it’s not « just in our heads ».