Arnold-Chiari Malformation Support Group
Arnold-Chiari malformation, sometimes referred to as 'Chiari malformation' or ACM, is a congenital anomaly of the brain. Arnold-Chiari Malformation II occurs in almost all children born with both spina bifida and hydrocephalus, but ACM I is typically seen in children and adults without spina bifida.
back in the hospital... passed out for the first time since surgery (jan).. feeling very blah toward the whole situation b/c although they admitted me, this is the same hospital (head of neuro) that told me my chiari was not causing my symptoms and i probably had a virus... a month later my syrinx is found, then surgery.. so no big hopes for findings during this stay.. also super sick of docs that tell you about your own chiari based on what they just read on a computer..."IT said chiari doesn't cause syncopal episodes..." anyway my NS has been giving me the brush-off lately so im gonna have to start shopping for a new one... just so jaded from my own experiences, not to mention everyone elses..finding a skilled Chiari NS is like finding a needle in a haystack..
However, God has blessed me with a great support system and my situation could be a lot worse then it is... I do, however, need to start handling it better... think I'm really battling depression, cant stop crying when I'm alone during the day, and my thoughts have never been so negative... can't tell anybody b/c I feel defeated if I admit it... just frustrated... sorry to vent, love you all!
God loves you and so do I !! Be PAIN FREE!!!
love, Katie
However, God has blessed me with a great support system and my situation could be a lot worse then it is... I do, however, need to start handling it better... think I'm really battling depression, cant stop crying when I'm alone during the day, and my thoughts have never been so negative... can't tell anybody b/c I feel defeated if I admit it... just frustrated... sorry to vent, love you all!
God loves you and so do I !! Be PAIN FREE!!!
love, Katie
That is what this site is for"support"! Good Days, & Bad days. Those idiots in the white coats....Yeah ..I have met my share. You said you have had surgery. Was it decompression?
I was severe when it came to sycope. They took my license for 6 years....I had bumps bruises, been through several pairs of glasses...and My share of embarrassing situations. They hell it dont cause syncope. After my decompression ...I had 3 episodes and then they faded off. I got ny license back and got some of my life back. I went to a chiari specialist and when he opened me up ...found that the left tonsil was wrapped around my brain stem and thats what caused the syncope.
Sorry you are going through this.Know that you are not alone. I have been there and no the depths of those depressions. I felt as if I could burden my family anymore....But, I am still here,,..I have a great deal of my life back and I am steady when it comes to my condition. Not great ...but good.
Hang in there......Vent to us....we will listen! We have all been there. I know you feel alone...But, just like me ,..when I read this post...I said - "she sounds like me"
Keep me posted and I will help you anyway I can.
Hang in there!
Much Love and Hugs!
Laura
GL :)
Curtiz