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On November 20th, I had the worst headache I've ever had in my life, 10/10 pain, which I knew wasn't normal. However, being a nurse, we always think we are fine.
It eventually faded into a tolerable migraine but wouldn't fully go away. No amount of Tylenol, Aleve, water, or caffeine made it better.
As most people know, I just got a new job closer to home; so with the fact that I'm about to not have health insurance for a month, I decided it would be best to go to the Emergency Room before I lost my insurance.
I went to DHMC on Monday afternoon, still with a dull pressure headache, and was immediately told I was getting a CT scan of my brain. I waited on the stretcher in anticipation, putting all my jewelry back on because surely it was going to be nothing and I'd be going home soon.
The ED doctor came into my room and squatted down beside me; instantly, I knew something was wrong. "Has anyone told you yet the results?" he asked. I said no... and he continued to tell me that they found an 8.1 mm tumor in the 3rd ventricle of my brain, called a colloid cyst.
A colloid cyst is a benign, slow-growing brain tumor that's filled with a gelatinous material called colloid. It's not cancer. It's thought to form when you are growing in the womb and usually doesn't present issues until your 30s/40s. It's the most rare type of brain tumor and makes up 1% of all brain tumors; 3 in a million people are affected by this type of tumor. It usually doesn't cause people issues until it grows to the point of blocking CSF (cerebral spinal fluid) drainage or starts pressing against structures in your brain.
This is why I have had this headache. Neurosurgery was consulted and after an MRI for better pictures, it was diagnosed as a colloid cyst. The only solution is to have it removed via endoscopic brain surgery.
The team at DHMC didn't seem very concerned because my neuro exams were normal and the only symptom I have is a headache; however, in the same sentence, they told me the worst thing that could happen is sudden death from acute hydrocephalus (build-up of CSF causing brain swelling, loss of consciousness, and subsequently death). I was already so overwhelmed by everything I didn't ask too many questions, but after sitting with this diagnosis for a couple of days and doing a lot of research, the fact that I have a constant headache and the increased headache when I do anything that raises my blood pressure means that the cyst is temporarily blocking the drainage of CSF, building up that pressure, causing the headache to be worse.
I found a neurosurgeon that practices at NY Presbyterian Weill Cornell in New York City that has done the most of these cyst removals than any other surgeon in the United States. He has had a great success rate of complete removal with no neurological side effects post-op. When I spoke to him and his team, he was at about 380 of these specific surgeries still with no issues and the utmost confidence in what he does.
So many of my friends and family want to help me. I have been hesitant to make this GoFundMe page because if you know me, I don't like asking people for help. I like to help others...
I will be staying in NYC from 1/8 to 1/14, for my pre-op appointments, surgery, inpatient for a couple of nights, and then a post-op appointment on the 14th.
Even with insurance, this is going to be expensive, not just the $200,000 surgery that my insurance better cover but travel, stay, food, etc.
We're taking the Amtrak to NYC to avoid having to drive in that hellish city, and we have to survive in NYC for 6 days, which is going to be expensive. I will be out of work for 4-6 weeks, hopefully not longer but you never know how surgery will go even if there's been good outcomes but out of work nonetheless.
Thank you for reading and thank you in advance. <3
This video below is the surgeon who will be doing my surgery, and I've included my MRI photos as well.

