Conquering Chiari

Please help donate to The Rockenhauser family with medical and travel expenses for Hannah’s Chiari decompression surgery. Hannah has been battling a rare medical condition called Arnold Chiari Malformation type 1 and will be having a brain surgery September 4th, 2025.

Hello everyone my name is Hannah Jo Rockenhauser, I am a 28 year old wife and mother of 1, and this is my story..

I was recently diagnosed with “Arnold Chiari Malformation type 1”, a rare medical condition where part of the cerebellum, a section of the brain, extends below the normal opening at the base of the skull, pushing into the spinal canal, causing pressure on the spinal cord and disrupting the flow of cerebrospinal fluid. It is an anatomical problem where there is basically too much brain to contain. I am creating a go fund me for my family and I as we are facing a very difficult time with medical & travel expenses due to my illness. I will be down for 6-8 weeks after brain surgery, traveling back and forth for all my treatments to OSU in Columbus. Which is 3 hours away from us.

I’ve been self advocating for a very long time. I was misdiagnosed after I gave birth to my son in 2019 with what they thought was Bell’s Palsy. I’ve been in and out of ERs. My mornings are awful, I struggle to get out of bed, dealing with vertigo, throwing up, nerve pain, dizziness, pressure headaches, and facial paralysis causing my face to randomly droop when I get any type of sickness/fever, or even stress. Unfortunately we have have been under a lot of stress. My symptoms have worsened in 2024 and this past month in July causing me to have Chiari attacks. On top of that I deal with horrible nerve shock pain, and tons of pressure in the back of my head/neck. My ears feel like they are full of water constantly. My last big facial flare up with was in April of 2024 causing some damage and I have lost some feeling/sensation on the right side of my face, but fortunately can still move my muscles!

After almost 6 long years of battling, being misdiagnosed, and searching for answers, I finally found a doctor that took the time and patience to listen to me. Got me an MRI immediately. I then found out in December 2024 about my Chiari Malformation. My Cerebellar tonsils are currently herniated 8mm on the right and 5mm on the left. My CSF (cerebral spinal fluid) is also diminished and being pinched off due to the herniation, causing my brain to not get enough CSF flow. It’s unfortunately affected my quality of life.

I also had to also stop working due to my health declining rapidly, all these Dr. appts, and my strength/health getting weaker. My health has unfortunately put us in financial distress. I have a boy who has Autism and attends ABA therapy mon-fri all year round, and a husband that works his tail off Mon-Sat.. I just want to make sure that my boys at home are taken care of, don’t have to worry, & have some support while I am down and recovering from my surgery. I usually do not do things like this, but I’m doing everything I can to make sure my family is going to be okay while I’m in recovery. They are my entire life.

If anyone would like to donate or even share this post to get word out, we’d greatly appreciate it so very much. Any left over money donated will also go to Chiari Fund. Thank you for your time and for reading my story. My story isn’t over. I still have a long battle, but I’m determined to win this war! I’m going to continue to advocate not only for myself, but for others who struggle with this illness. I will wear purple for myself the day of surgery and for everyone else who battles with Arnold Chiari Malformation, bc it definitely isn’t discussed enough.. Also September is Chiari Awareness month, so please wear purple!! I will conquer Chiar!