Chiari Malformation

Hey everyone!

I'm new to experience project as of like 5 minutes ago.

I don't know exactly why I joined... I just need some support.

My mom had been having neck/back pain, headaches, and numbness in her arm severely. Headaches she's had since she was a kid.

She had an MRI yesterday.

You know its never good when a doctor says, "Well, at least its not cancer."
It's almost as bad.

It turns out that my mom has had Chiari since she was born. Her brain has slipped out a hole in the back of her brain 10 cm. If it gets to 12, she will either have to have a life-saving surgery (which one of my friend's mom died from three years ago) or she will be left paralyzed.

With six kids (including me) and a loving husband, she can't afford to die right now. Or be left paralyzed.

Life will change dramatically for us. She will be frequenting doctor's offices. Her activity will be limited.

I DON'T want my mom to die. I think that I would too. As a homeschooler, I spend most of my time with my mom. Me, and my siblings, would be heartbroken and lost.

I've read one post that said her mom survived this. Hopefully, mine will too. The surgery that will possibly save her life is almost as risky as letting this go, however, and I'm having a hard time coping.

Why my mom? Why OUR family? Why ME?...

I need some feedback...

Thanks to all who reply.

~GodsListener98
GodsListener98 GodsListener98
13-15
3 Responses Dec 11, 2012

My 3 yr. old son has this as well. He is at an 11cm. They have never told me it is life threating, but it does cause him to have severe troubles. He has speech issues, bad headaches, sore necks, black-out spells, develoemental delays, arm & leg numbness & they go completely out on him. His nuerologist didn't seem to worry at all about this & said he didn't need surgery. His ped. doctor seemed to think other wise and sent him to the Nuero. surgeon. The nuero. surgeon said he most def. would need surgery but they would like to wait until he was at least 3 yrs old. mostly because they would have to do multiple surgeries other wise. I find all kinds of conflicting info on the subject. The surgery is not a cure but may help with some symptoms. The surgery is a dangerous one as the are dealing with your brain. I believe it is difficult for everyone even the doctors because they don't really know much about it. Keep your head up, take it day by day, & live your life to the fullest. Keep researching, find out as much info as you can, & never ever give up! Gook Luck to you & your family~ many many prayers your way !

Look to your family and friends as help...don't be afraid to talk your dad about the situation. Not all people die from the surgery, and if she gets it and it works out she will be mostly fine. My heart breaks for you and your family. Love and prayers.

Hi Ghost... i don't mind. I want to live as a ghost as you.