Chiari Online Support Group

I've got a big brain, but an even bigger smile. :)

Hey Yall!

My name is Ashlyn. I am 19 years old and I’m from Central Texas. I was diagnosed with Chiari 2 weeks before my 18th birthday. Exactly three months from my diagnosis date I had a decompression surgery done. It is been almost a year and a half since my surgery and I can honestly say it’s been a crazy journey. Shortly after my surgery I was diagnosed with Basilar Invagination. My symptoms sadly only went away for about two weeks and then they came straight back which is when I was diagnosed with BI and hydrocephalus. I published an article on the Fight like A Girl website if y’all would like to check it out! It a very detailed story of my fight against Chiari Malformation. I currently study Diagnosis Medical Sonography in hopes of specializing in neuro-sonography.

Hi, you sound so strong and up beat. That’s probably part of being young. Glad your surgery went well, wish you all the best. I’m 54 and was diagnosed in Jan, 2017. They want to do neck and decompression surgery. I was happy to finally have an answer to why I was having all these problems. I feel like it’s too late for me to have surgery with all the risks. I also have Congenital Cervical Spinal Stenosis… 3 of my vertebrae are under 10mm, the others under 13mm. I have compression from Chairi, brain herniation, vertebraes being too small, and my brain stem has fallen and has a bulge in it. The spinal cord can’t be touched dr says. Tina from WI

Hi Tina!!

I’m glad you got some answers but I am sorry you are having so many problems. I wish I knew what to say about stenosis, but I do not. In my opinion, if your doctors say you should have surgery you should do it! I know it’s scary but it’s never too late to have a better life. Everyone deserves it :slight_smile: If your doctors say they can help with your chiari at the very least, I say give it your best shot. I almost backed out of surgery but I’m so glad I didn’t.