Sarah Remains Very Open About Her Journey In Order To Spread Chiari Awareness

September is Chiari Awareness month. It was last year, at this time, that I opened up about my new diagnosis of Chiari Malformation. While my symptoms, certainly, weren't new to me...the finding was. My journey continues, but now my daughter joins me. We head back to NYC on Friday to find out her game plan.

I continue to do well with my recovery. Each day is different. Similar to the phrase 'life is like a box of chocolates'...with chiari, you never know what you're going to get. Following my follow-up last month, I am stable and the symptoms I continue to have are par for the course. Pain, numbness, the feeling of bugs constantly crawling on me and extreme fatigue is my new 'normal' and I think I've adapted well to it. I know what this disease has the capability of doing and I'm not there yet and I may never be. With Chiari, I've been gifted to also have Ehler's Danlos Syndrom (connective tissue disorder), Craniocervical Instability (as a result, I had a neck fusion) & Tethered Cord Syndrome (my tailbone is anchored to the side). Eventually, more surgery will be required...but we'll leave well enough alone for now.

While, my daughter doesn't have chiari, she has the other 'gifts' that go with it. She also has Craniocervical Instability, EDS...but she has something I don't have...and that's syringomyelia. This is where fluid filled sacs (filled with cerebral spinal fluid) form on the spine. It causes simliar neurological symptoms, like chiari. On Friday (September 23rd), we will make our way back to NYC to find out her surgical game plan. Good ju ju please. I would go through this 10 times over again...if that meant Emma didn't have to.

Emma is my warrior and she's strong willed like me. I know she'll be fine...plus we have the best doctor in the country!

Sarah & Dr. Bolognese

Thank you to everyone who has reached out with their kind words. They mean the world to us and keep us moving forward. The purpose of this is to help get the ‘awareness’ out about Chiari Malformation Type 1. If you have any of these symptoms, please talk to your doctor about getting an MRI: