Kaye's Fight Against Chiari Malformation-Syringomyelia

My name is Kaye and I have a condition called Chiari Malformation. I was diagnosed when I started to get debilitating headaches at age 12. Sometimes people go through their entire lives without being effected by this condition. It is essentially when your cerebellum drops a bit below your skull. I had always had headaches but didn't really have symptoms that would have caused me to seek medical intervention.

Cut to 2020 and I have had many fainting spells which I thought were related to stress levels. They slowly started to dissipate but starting in 2023 my legs started to become very very stiff and I had become very unsteady on my feet. I was starting to feel a lot of pain and in 2023 I got an X-ray of my back and I had developed scoliosis out of the blue. Soon after I was diagnosed with cervical kyphois (military neck). Later that year I started to get black spots and blur outs in my left eye. I started to stutter occasionally and my brain started to give me trouble recalling information.

In May 2025 I closed my eyes for a moment in the shower and face planted into the side of my sink cabinet causing a concussion and needing stitches. After this very bad fall I thought I might see a neurosurgeon to get a scan of my brain and spine.

The MRI scan showed I had a very large syrinx which had nearly enveloped my entire spine. From top to bottom. This was caused by the condition I was born with and got progressively worse. This is what is causing my neurological issues. My neurosurgeon has scheduled a Chiari decompression surgery on me on August 5th. This will hopefully create more space at the top of my spine so that cerebral fluid can flow properly and thus hopefully shrink the syrinx that is pressing on the nerves of my spine and causing all these issues. He said that if I don't get this surgery the syrinx will continue to grow and eventually it will lead to paralysis.

I truly wish we lived in a world where these types of fundraising campaigns were unnecessary. No one should have to worry about economic ruin so that they can avoid permanent paralysis of their limbs.

Thankfully I have insurance but my short term disability only pays 60% of my pay and I would like to get some orthopedic pillows and other things to help with my recovery. My yearly insurance deductible is $3,000 and I am not quite sure what extra awesome things Cigna will charge me for after my surgery but if the amount of times I have had to call them already and argue about prior authorizations is any indication, I am in for a long fight, or rather I should say likely a large bill.

Thanks so much I love you all.