Over the last couple of months, I have either commented or posted part of my wild rollercoaster of a life. I went from being someone who was running varsity cross country in high school as a sophomore and setting a personal best at 18:06 to being hospitalized five months later. Once I recovered from that another thing happened I covered below which sent me on a ~3-year journey to finally get the help I needed. For the sake of everyone who cares to read this, I have decided to break it up into the backstory, surgeries and recoveries, and finally how my day-to-day life has been over the last 18 months or so.
Backstory
The Concussion
Plain and simple my health has been a mess for the last 12 and a half years. On MLK day in 2012, I suffered a concussion that I did not recover from as expected. I had had a previous concussion a few years earlier from football. I lost a couple weeks of memory but once I rested and let my brain heal I was more or less able to bounce back and be "normal" after 6-8 weeks. This time though that was not the case. A lot of what I know about this time isn't from actual memories but rather from what my parents and friends told me after the fact. I lost 8 months of memory from this concussion going back to November 2011 when I was in a long-term relationship forgetting it had ever ended and to this day not exactly sure what ended it but oh well.
I was also hospitalized due to my general practitioner doctor at the time honestly just failing me as a patient and throwing a bunch of meds at me which had side effects and which also couldn't be swapped out. Instead, I should have been tapered down on one before being given another. All of this mismanagement ended up with me in the hospital for 5 days for my body to flush the toxic concoction and have a new doctor put me on meds that actually would help. It turned out that even with no memory I was smart enough to figure out how to beat the top-of-the-line IMPACT testing program at the time and be given back my driver's license only to admit I had no memory I could just beat pattern recognition crap testing.
The Accident
Right around July beginning of August, I started to drive a little bit. It was never very far and when I drove my parents were in contact with whoever I was going to see to make sure I arrived there and that there were no issues. The next incident occurred in the middle/end of August before my senior year started. I was volunteering at one of my good friend's mom's school for volunteer hours to satisfy my National Honor Society requirement. After I had finished I was driving to my allergist appointment to meet my mom and do my yearly checkup.
Halfway to the doctor as I was going through a green light on the highway, the speed limit was 55 and I was going about 50, I suddenly went from going straight down the road to suddenly flying off the road while slamming on my breaks... A college kid in an FJ Cruiser had blown a red light and "tried to merge" into my lane... Now I was in the left lane meaning he had crossed 4 lanes of traffic to hit me so instead of a direct T-bone I was hit at roughly a 60-degree angle spinning me out and sending my car through the 4 lanes he had gone through over a 10-inch curb and perfectly threading the 12-foot needle between the end of a concrete bridge and the metal pole holding highs of which way to go for various things.
I was in shock naturally and called my mom and told her I wouldn't be able to make my doctor's appointment on time because someone had just hit me. She asked where I was and immediately called my dad because I guess she could tell I was not doing too hot. The kid who had hit me did stop and pull over and waited till both my parents and the police got there to fill out a police report. At the time we had no idea that even though I looked fine this accident just set the ball rolling for what I can only call a nightmare. My mom drove me home my dad somehow drove the car back to our house as well and the following day I went to the doctor to get checked out. I had dodged a concussion but did end up with nasty whiplash and issues with my back as well.
Incorrect Diagnosis
Over the coming days and weeks I was not getting better at all I only increasingly got sicker and sicker my head was pounding, I had extreme light sensitivity, I wasn't hungry, and when I ate I often would end up not being able to keep it down. Hoping to quickly figure this out my mom got me in to see one of the "best" neurologists in our area. He heard everything listened to my symptoms and ordered some scans. A few days later after the scans came back I went back in and was told I had "chronic migraine". I was given more medication for this to help control it but those meds failed to ever completely control it. The neurologist went down what felt like a catalog of medications before we ended up at Botox... Botox sucks plain and simple I was getting 26 injections across my face and back of head I would bleed and it made me feel awful. Once I would get them I would often fall asleep and sleep for 15/16 hours straight.
Since you can only get Botox every X amount of days, I have no idea what the number was, I would still get migraines and suffer from all the effects of them. I did everything from self-administered shots, and nasal sprays, to occipital blocks and IV meds. This went on for years. I spent my entire senior year of high school battling this before finally getting to the point of living with the pain. I went off to A&M Galveston for my freshman year of college and would drive home for the Botox as well as to get IV's placed and would give myself the infusions to help me.
My sophomore year I transferred to Texas A&M main campus and would scare the hell out of my roommates when they would find me either throwing up consistently or laying on the kitchen tile because the tile was cold and it felt good in the dark. One of them even called their mom concerned with what I was doing before my mom told him that I do the same stuff at home it was just a way I was handling it. The spring of my sophomore year a previous issue I had dealt with from the concussion rendered its ugly head.
Partial Brain Seizures
When someone has a seizure over 50% of their brain is having said seizure leading to it. When you have less than 50% there are not any visible signs and even the mental effects are a little hard to be able to decipher. Since I had been diagnosed with them before and I started to realize some of the same issues were occurring I went back to a different doctor in my ever-growing medical team who did an EEG and well bam there it was. Obviously, this led to me needing to return home and focus on my health again with medication changes and these brain therapy appointments to hash out and fix my brain waves. After a couple of months, I was able to return to normal life and return to school for my junior year.... or so I thought.
New Hope?
When it came to talking about how I was doing healthwise with my parents it had reached the point where I figured this was the best I was going to get and while it wasn't great it was something... not much but something. We had some friends of the family though who had kids that had a condition called Chiari Malformation. The doctor or well actually neurosurgeon they used was located in Long Island as Houston did not have anyone with this sort of expertise. My parents were hanging out with them one afternoon and the wife was off with one of the kids in Long Island and asked how I was my parents said I was doing okay still learning to live with the headaches and other issues but otherwise doing well. On a whim, the wife told my parents to send up my most recent MRI, and the Dr. would take a look and see if he saw anything.
I didn't know anything about this because my parents didn't want to get my hopes up for any sort of discovery to help me. From what I was told when the Dr. put my CD in and pulled up my MRI on the first slide not only he but our family friend could see the issue that was causing my pain and why nothing was working. I had Chiari Malformation.
Now how was I told this in hindsight was really really funny but at the time so much at the time. I had taken an Organic Chemistry final at 8 AM and once done drove straight home to Houston so I could finish getting packed for the trip with my family I was taking to Beliz the next day. Well as soon as I walked in the front door and started to walk to the stairs to take my luggage to my room my dad made the comment "we found out what is wrong with you but you need brain surgery." Not understanding he was being serious since we were both walking in different directions I shrugged it off. A couple of hours later though my parents did break the news do me that it wasn't a joke it was a dead serious thing and I had a virtual appointment set up not long after we got back from the trip after Christmas.
Belize was a rough trip because my emotions were all over the place. Reading about the surgery was horrifying and finding out that there was no cure for my condition rather surgery was used to alleviate the most amount of symptoms that they could wasn't exactly the most encouraging. Once we got back I met the doctor over Skype and given the severity, my parents and the doctor agreed we should get a second opinion from someone in the Houston area just in case I could get treated closer to home.
The one and I mean one appointment I went to with another doctor was easily the worst experience I had in my life. He had a couple of medical students with him and as soon as he found out I went to A&M he went in after how I went to A&M and he went to Texas and worked for the Univerity of Texas' Medical Center. He told me the patient to run a differential diagnosis on myself and prove I had the condition I did. Remember I only learned about this condition within the last month so whatever his goal was I had no clue. It didn't get any better either as he belittled me in front of both my parents and finally, I snapped and got up to leave in the middle of him talking. One of his medical students made the "brave" move to cut me off and stand in front of the door and I as calmly as I could while shaking told her she needed to move. Now.
Mind you during this entire time this doctor was oblivious I guess because after 10 minutes after I left he asked my parents where I had gone. They were well aware of what he had done and my dad who went to the University of Texas was sick of him as well and told him "Cody left. He wasn't going to be treated like that and since you treated him like crap he just left and we think is waiting in the lobby of this building but we would have to call." Bless my poor dad who when the Dr tried to justify his actions and asked my mom to call me and have me come back up and into the office (I declined to do so since this guy wasn't going to help me and instead wanted random testing done that would have been brutal) my mom after we talked left and told me dad we were done here. After the doctor told my dad "How you treat something like Chiari" which was super outdated and involved metal plates and chunks of skull removed my dad lit into him for how he treated me.
After talking with my parents and this being the only option that offered me a chance at a normal life I agreed and they supported me to have the surgery. My now doctor (neurosurgeon) in Long Island Dr. B was able to add me to his schedule just a little over a month later in February 2016.