Chiari Malformation often comes with the territory of those of us with hEDS. It is something I have been fighting for several years now with a great deal of pain, seizures, auditory and speech problems and so much more. But now it has become much worse.
Four weeks ago, I had my annual visit with my neurosurgeon who informed me that I had developed several holes in my brain and that the growth had increased in size. So he made the decision to schedule me for brain surgery. So I will have the procedure next month and begin my journey on a new road.
I fought hard to get here. To receive proper diagnosis, to find the best doctors, the best therapists, best surgeons and to just find some relief from the pain and symptoms.
There have been rough days. Incredibly rough days. There have been times when I wanted to just throw my hands up in the air and give up but I didn’t and I won’t.
I believe you can’t be in awe of a road that God leads you down and then be any less in awe of a corner He has you turn.
My procedure is scheduled for January 13th. I won’t be blogging immediately after, however I will be checking in and sharing my road to recovery.
This is my Chiari journey. It isn’t going away. There is no cure but this surgery is saving my life. It will help prevent any further damage to my brain and nervous system and additionally manage my symptoms that have become so debilitating.
I wish for myself and every other Chiarian that a cure can be found. But in the meantime, I will do everything in my power to advocate and raise awareness for all Chiari Warriors, for all Zebras! We got this because God’s this!
When I am afraid, I put my trust in you. – Psalm 56:3
Have a very Happy Holidays!