I'm having brain surgery.
Published: 2022-06-16 16:54:59

Exactly one week from today, I will be going under to attempt to fix a [fistula](https://en.wikipedia.org/wiki/Arteriovenous_fistula) in my brain.

About three years ago, I started having daily headaches. At the time, I thought it was from stress, but they persisted. I went to my PCP at the time (I had no insurance) and they decided to try and treat me with anti-depressants, anxiety meds and a bit of scorn.

Turn out, that didn't work! I was finally able to push for an MRI which showed that my pituitary gland had been smashed from the fluid pressure in my head causing [empty sella syndrome](https://en.wikipedia.org/wiki/Empty_sella_syndrome). My Dr. called it "clinically insignificant". I told him that my new neurologist and I would make that decision and promptly fired him.

The neuro then ran me through 6-7 drugs over the course of a year until I finally got him to sign off on a lumbar puncture to test the pressure in my brain and spine. To his (and only his) surprise, it was elevated to the point of an [Idiopathic Intercranial Hypertension](https://en.wikipedia.org/wiki/Idiopathic_intracranial_hypertension) diagnoses. Which, was great. But also meant more meds to try.

Over the course of a few more months, we tried meds to lower the amount of spinal fluid that I produced. They weren't seemingly working and covid was surging across the country quickly, shutting down hospitals to all but life saving surgeries. So I decided to push for a [VP shunt](https://en.wikipedia.org/wiki/Cerebral_shunt) to be placed in my head to regulate the pressure.

The neurosurgeon I spoke to agreed and on July 2nd, 2000 I had what amounts to a fancy straw stuck into my skull and ran down the inside of my body to dump excess fluid into my belly area. The surgery was a success! The results, not so much. Still, the headaches persisted.

So I continued searching for answers. This entire time, I had to advocate for myself. I was basically making the decisions Drs. should be making without even 1/100th the training they get. But good Drs don't live or stay in Kansas.

I finally end up getting referred to a radiological interventionist so I can have a brain catheter done to test pressures and to map out my brains circulatory system. They go up through your groin and poke around in your brain and you're awake for all of this. It's pretty intense. 

He finds a fistula behind my right eye. Not a terrible one, but bad enough that it would be needing dealt with when I get older and given my symptoms, might even help now. [Let's fix that with some glue and platinum coils](https://www.hopkinsmedicine.org/neurology_neurosurgery/centers_clinics/cerebrovascular/conditions/arteriovenous_fistula_davf.html)!

This is not supposed to be a big deal surgery. I'm supposed to go under, but it shouldn't take more than 2 hours, max. I awake 6 hours later having a nurse literally vulcan death gripping me to get a response. Turns out, they created a hemorrhage on my brain. And in their work to keep me asleep to heal through that, they let my heart rate drop to around 20 and damn near lost me a couple of times. In the interest of brevity, we'll skip the horrendous treatment and lies that hospital gave me.

I make it out of there, lucky to not only be alive, but also nearly fully capable mentally. After a couple of more catheters to check, that Dr says he's completely fixed the issue. But my head still hurts.

Figuring out that my work wasn't done, I start looking for actual specialists in IIH in Kansas City. KU Med has one of the premier Drs that does a newer treatment for it, so I immediately schedule to see him. After getting him all of my images from Wichita he say, "I can CLEARLY still see the fistula on your old Drs images." He fixed nothing and nearly killed me while making a bag.

So, the gold standard treatment for the type of fistula I have is intense and gruesome. They basically cut from my ears, up into my hairline and peel down my forehead to access my brow bone and go in through there to staple it shut. It's 5 weeks of recovery though and I'm in the midst of transitioning into tech and changing my life. "Ain't nobody got time for that". There is however, a newer experimental way of dealing with it with a tiny little specially made catheter. The recovery time for that is a single day if all goes well. Sign me up for that one.

So, that's where I'm at. I'm trying to focus on learning and job hunting while being a week out from a surgery that I've had troubles with before, but could change my life.

If you read through this, thank you. I truly have love for you.