Back in 2014, after a bad fall off a horse, I started experiencing some of the most excruciatingly painful migraines of my life. It took going through three different doctors to finally get my Chiari malformation diagnosis in April of 2015. In short, Chiari is a structural defect where the back of my skull is too small & pushes my cerebellum into my spinal canal. This puts pressure on the brainstem & spinal cord, and is restricting proper flow of my cerebrospinal fluid (CSF). Over the years, I have tried numerous medications, treatments, and lifestyle changes to hopefully manage this condition successfully, but to no avail. After receiving less-than-acceptable care from my neurologist, I transferred my care to Dr. Judy Huang, a Chiari specialist and neurosurgeon, at Johns Hopkins.

Finally, after years of fighting with debilitating symptoms (excruciating migraines, head pressure, balance issues, trouble swallowing, vertigo, vision changes, insomnia, & more), loading myself with medications, and having to hold back from so many things in life, I was offered a promising solution this past April. Dr. Huang highly recommended decompression surgery to treat my symptoms. She has extremely high confidence that this surgery will not only improve my most debilitating and painful symptoms, but that it will also improve my overall quality of life.

The surgery is currently scheduled for October 28th of this year. It is quite extensive and comes with a very painful and long recovery. Dr. Huang plans to remove a small piece of my skull and dura (the covering of the brain that lies beneath the skull) and replace them with a mesh and rubber-like implant that will allow my brain to have more room. She then plans to remove a small portion of my C1 vertebra and possibly shorten my cerebellar tonsils, which are what extend into my spinal canal. After surgery, I will be in the ICU recovering for 2-3 nights, will most likely need to stay in the area a few days to a week after surgery, and will have a minimum recovery time of 4 months.

Due to my condition, I am only able to work part-time, and this is definitely a costly (even after insurance) but also a necessary process, so I am hoping that I can raise some money & use the funds to help offset the costs of housing after hospital discharge, food needs, and the overall cost of the procedure. If anyone would like to donate gift cards specifically for meals, please feel free to reach out for my grandmother Debbie Shope [phone redacted].

Here is a breakdown of the estimated costs:

Out of pocket cost for the surgery after insurance: $8,752.30

Hospital housing after surgery: $1,470

Budgeted food expenses: $600

If you would like to learn more you can follow the above Instagram account or watch this video presented by my neurosurgeon Dr. Judy Huang: https://youtu.be/xQjToJy4LO8?si=_Zufv0T8hmdiO04S

I am hoping to update everyone along the way! You can also follow my Chiari journey on Instagram by following @chiariwarriorb. I will be posting information about Chiari, my experience, recovery, and how life is going after surgery if you want to stay up to date.

Thank you so much everyone! If you have any specific questions please feel free to reach out. I would be happy to answer them.