For years, I have been living with brief, but debilitating headaches that I couldn't explain. They predominately occurred during moments of exertion, like laughing, bending, lifting, or even sneezing. I brushed them off as a low priority concern for a while, but they continued to worsen. In December 2025 I finally scheduled a visit with my doctor to discuss it.

It turns out, my brain is literally herniating through the base of my skull - a rare condition called Chiari 1 Malformation, in which the brain is too large for the skull and dips into the spinal cavity.

I've dealt with other symptoms, such as chronic fatigue, dizziness, brain fog, lack of coordination, numbness, and weakness in the hands - symptoms I'd falsely attributed to unrelated issues, that are most likely caused by this condition.

Since December, I've had several MRIs, an MRA, seen an ophthalmologist, a neurologist, and a neurosurgeon. Scans indicated the flow of cerebrospinal fluid is being restricted. In the last two months, I've developed other types of headaches that are far more persistent, worrying me about what future symptoms could occur. If left untreated, other symptoms can develop including: syncope, vision changes/blurring, sleep apnea, difficulty swallowing, extreme light sensitivity, tinnitus, vertigo, hydrocephalus, muscle weakness, permanent nerve damage, and Syringomyelia (a cyst formed within the spinal chord - which can lead to paralysis!).

Given the severity of my current symptoms and their recent escalation, a decompression surgery has been strongly recommended to relieve pressure on my brain and spinal cord. After much consideration, my wife Aster and I agreed that moving forward now (before irreversible symptoms develop), is the right decision for me and for us.

What does decompression surgery entail?

In my instance, a suboccipital craniectomy and a c1 laminectomy.

Following surgery I will remain in the hospital for approximately 3 days, then return home for the remainder of my recovery. I will be off work for a minimum of 6 weeks to upwards of 12 weeks. Some people do require a second, more invasive brain surgery.

As long as my recovery goes smoothly, I will begin physical therapy during my stay at home, to help me regain function. The road to recovery may not be easy, but I'm eager to get through this and hopefully, be feeling worlds better.

As uncomfortable as it is to ask for help, I know that without assistance, the cost of surgery, physical therapy, and time off of work, poses a major burden on our household. The approximate estimate I have from my insurance company indicates an out of pocket cost of $6,500. This does not include required follow-up visits, post-operative care, post-surgical scans, or physical therapy. I do not have access to any type of assistance or paid medical leave through my workplace. My time away will cut our income significantly, leaving us in a precarious position.

If you have the means to donate, your support will go directly towards helping cover medical bills, prescriptions, post-operative care, and basic living expenses while I cannot work.

If you cannot or do not wish to donate directly to this fund, please consider the following:

Thank you for taking the time to read my story. Your support means so much to us!

My surgery is currently scheduled for August 12th - I will do my best to keep this page updated leading up to surgery and throughout my recovery!

With lots of love,

Tiffany & Aster ❤️