If you have not seen or read the first part of this story you can find it here it will help make this make more sense! #647175 I went back and forth on if I should add photos or not to make it easier for people to understand and decided to not to because of the length of the post for one and also some of the pictures they don't look so hot but that is how recovery is... it might look worse before it gets better.

What is Chiari Malformation There are a very types or versions of Chiari Malformation. For me I was born with it but was asymptomatic my entire life, even with the concussions, till the car wreck that "woke it up". What is occurring is that your cerebellum is herniating down your spinal column and interfering with your brain stem since ya know it isn't supposed to be there. Chiari is also something that has a TONNNNNN of best friends. These issues include (I am just going to list what I have that has been tied to it) ehlers danlos syndrome (EDS for short), Postural orthostatic tachycardia syndrome (POTS for short), epilepsy, and digestive tract issues. If yall would like I can further dive into these because well EDS and POTS are very complex and sometimes just confusing conditions themselves.

Before the First Surgery Breaking the News

Once my parents and I had decided to move forward with neurosurgery with Dr. B the few weeks between the decision and flying to New York was almost a complete blur. While the decision was a key first step there was still a ton that needed to be taken care of from the medical side but also with my personal life side and multiple times during those weeks I felt like I was going to explode due to the pressure. In all honesty at the time, I would swing from chomping at the bit for the surgery to dreading the idea of it but there was one key underlying thing.

I couldn't live the way I was anymore and I knew it. 

During this time I would think back to the first call I had with the Doctor and by the time I returned from Belize with my family my eyes were opened to my medical issues. It was during the first call with Dr. B that he addressed a ton of the typical symptoms (migraines, blurry vision, neck discomfort) but he also asked if I had balance issues, was clumsy, felt parts of my body were not attached to me, and if walking in a straight line was an issue for me. There were issues I suffered from but I never really told people about them because I thought I was just weird like that. There were times in my apartment at Texas A&M that I would just miss a step and summersalt down the stairs. In High School it was a common complaint with a couple of my girlfriends that I could not walk in a straight line to save my life and would often bump into them enough that they thought I was messing with them... turns out not only was that not normal but it was a symptom of my body being as messed up as it was. 

The Chiari diagnosis though was still a tough pill to swallow because it wasn't a cure and there was not a cure rather this was done to help with the symptoms and how successful it was would only be known after the fact. I kept thinking and talking to my parents and friends alike going do I really need brain surgery I mean it is brain surgery after all they are going to go into my head and remove part of my brain is this really worth it?! 

Beyond this mental part was breaking the news to my friends and family who didn't have a clue how bad everything had been. This included my best friends who I even lived with and it was hard for me to admit this. Maybe it was a pride thing maybe it was just wanting to continue the "normal" track of life I had been on.

Surgery Prep and Flying to New York On the other side of this battle I felt I had inside was all of the additional medical testing I needed to get. We are talking new MRI with and without contrast, CT scans, EKG, blood work, you name it I had to get it done if not for the first time then once again. It felt like every single day was at least one if not more doctor appointment to get this information gathered and sent to my neurosurgeon.

I also had to create and sign a living will. Now that hit me like a ton of bricks because here I was 20 years old writing legal instructions for my parents to plug the plug if need be. Then breaking up assets donating them to certain places and gifting them to my brother... it was something that I will never never forget.

I have a younger brother who was in high school during all of this, he is three years younger than me, so both my parents couldn't be with me the whole time. The plan was for my mom to travel with me and my dad to fly up for the surgery and the following days before returning back home. It was a little surreal flying to New York since at the same time my friends were just starting up school again so I was seeing all of these posts and parties knowing I wouldn't be around for a minute as I recovered.

For all my surgeries I was lucky enough to stay at the Ronald McDonald House of Long Island and that place will forever hold a special place in my heart. While most people think about it being just kids they do take people up to right around 21/22 years old esp if you have some sort of connection with the House which I had through my neurosurgeon.

First and foremost the wildest thing to most people is that up until surgery day, I had never met Dr. B in person. Given the distance and the speed at which this came together the best we could do was Skype. I swear I must have signed 100+ forms that day and that's with coming in the day before my surgery and signing 100+ earlier. About an hour or so before I was due to be wheeled back I finally met Dr. B and again I can only laugh at how this guy was getting ready to perform neurosurgery on me and this was the time just before I went back that I was actually seeing this man in person.

To summarize this surgery the plan was to make a 4-inch incision, drill a silver dollar-sized hole at the base of my skull (near my brain stem), and then for ease of understanding stick a hot poker into my cerebral tonsils. This causes the cerebral tonsils to shrivel up and easily be removed. The goal of this is to create more space in your skull and give everything some space. When I had it done and honestly I haven't checked the cerebral tonsils... we didn't know what they exactly did but they were not required to live and it was believed the cerebral tonsils were something like an appendix... had a function but not really necessary anymore. In total this was supposed to last roughly 6 hours from what I recall so it was not a crazy long surgery but it also wasn't to short either.

Turns out though well given my luck we had some stuff go sideways because of course! Oddly enough one of the ways that they monitor you is to put needles in your tongue that monitor your brain. I have no idea how it works but that's what I was told. Another thing is given how big of a surgery this is you do get an A-line or an Arterial line... think a special IV that goes into the artery and not the vein. While the surgery itself went well when they moved me to the recovery area someone must have bumped or done something and "broke" my A-line.

Why would I say this? Because according to them my blood pressure went to 220/110 or so and I was still sadated. The nurses must have flipped because I later found out they "hit me" with one round of medication to lower it and then another round because my blood pressure did not change at all! After the second round they called in a cardiologist who simply asked did you double check with just a blood pressure cuff... oops they didn't and now instead of having the super high blood pressure they were dealing with someone would had one that was stupid stupid low. I cannot remember what exactly it was but it was something stupid like 70 over 40 or 60 over 30 I mean it was bad.

Treatment for this though was even better! They dumped ice on me and KEPT SLAPPING ME TELLING ME TO STAY AWAKE I COULDNT GO TO SLEEP. Honestly, the brief flashes I remember were wild. Now during all of this not only has Dr. B gone out and talked to my parents but instead of being back there 45 minutes or so when he went looking for me 2 hours later he found my parents still waiting and went in himself to figure out wtf had happened.

Needless to say he was pissed when he found out and because he was the high-standing top of the hospital doc he was he was able to get my parents in to see me even though they typically do not allow people back there. Remember how I said they stuck needles in my tongue well the reason I mentioned that is because there was a probability of it causing bleeding but the guy told me don't worry the nurses will clean you up... plot twist they didn't so my moms first look at me after hearing about the heart stuff and how I am still out of it and cant stay awake is her son with a ghost white face due to the blood pressure meds with A TRAIL OF DRIED BLOOD COMING OUT OF THE CORNER OF MY MOUTH.

She kept it together when she talked to me and urged me to stay awake but after 15-20 minutes they had to leave so that the nurses could prep to transport me to the Neuro ICU for the night. They both lost it though outside the recovery area and my Dr. supposedly just ripped into the nursing staff. Dr. B apologized over and over giving them them his personal number and gave them a copy of the instructions he had left. This was so they would know exactly what was supposed to go on and to call him if something didn't seem right. He was also going to check on me again in Neuro ICU and first thing in the morning.

Waking Up and Dr. B Remember I was asleep for all of this or if I was awake was super out of it. The first thing I can recall is my mom telling me it was time to get up and I was at this point in the Neuro ICU with my parents. I had to spend the first night here due to the surgery which makes sense before I would be transferred to a room for another 4 days before discharge if I was lucky. Coming around slowly my parents were asking me how I was if I needed anything etc. etc. and then they asked "How is your head?" It was then I realized for the first time in over 3 years I had no headache! I looked at them and went "Mom my head it doesn't hurt anymore." Yeah, that broke them into tears as well but those were the good tears to have!

Not long after I told them this Dr. B came by to visit and check in on me. I had been told by my family friends previously that moving your head to the left and right was a huge thing for recovery and if you don't Dr. B will move your head for you since you gotta. I had a pain pump at the time with the tip top-of-the-line painkillers that make Oxy look like nothing and hit that machine button right before I moved my head for him. He then told me the details about the surgery and well it turned out I was a lot worse off than the scans had shown.

The herniation that I had was significant but not the worst however what did not show up was how thick my tonsils were. With most people they are long and stringy while with me it was short and thick. Not only that but it had almost completely surrounded my brain stem so the comment of my cerebellum was strangling my brain stem was a very accurate thing for me. It was only a matter of time before I was going to have significant issues because of in life and taking care of it when I did was important to prevent lasting damage. Not to flex either but he did say mine might have been the thickest tonsils he had ever seen which I mean for a guy that specializes in this surgery is saying something!

Hospital Stay through Return to Texas The first night was terrible because Neuro ICU doesn't have doors so there was beeping noises coming from the entire Neuro ICU area going off all the time limiting the amount of sleep I was able to get. First thing the next morning they transferred me to my room which was a little funny from the standpoint that they did it so early Dr. B had trouble finding me! After he checked in he sent in the Physical Therapist for my first PT appointment. Something I didn't think of before the surgery is with this "extra" room that had been created in my skull my brain itself was now thrown off. Like back with a baby and them learning how to hold up their head and such it was the same with me. At the prime age of 20 years old I got my first cane that I had to use to walk around. Not only that but I also had to learn how to walk upstairs again because the whole perception thing was thrown out the window.

Remember I am from Houston, Texas so I had never seen normal snowfall like so many others had. Well on my third day, it started snowing outside and I could see it out my window. After knocking out morning PT and Dr. B checking in again I asked him if I could, in a wheelchair, go out and see the snow. As a reward for doing everything he asked he said that was fine and to go ahead. Once he left my mom flagged down my nurse and told her what the doctor had said.... well this kick off a whole tissy with the head nurse on my floor because my doctor would never do that I could see the snow from the window blah blah blah. We went back and forth with her I cried cause ya know pain meds make you emotional before my mom and I gave up. One of the nurses who I had hit it off with came back a few minutes later with a tray of snow he had gathered and a cup and stuff for me to play with. Again I cried because it was so nice and he told us this head nurse lady was a pain and people hated working with her.

I kid you not Dr. B texted my mom maybe 5 minutes after this while I was playing with my tray of snow asking how I had liked the snow and she told him the head nurse didn't let her wheel me out... Immediate phone call from Dr. B to my mom saying give the nurse my phone to talk to right now. The nurse lady did not like what he was saying and said she didn't believe it was him and if it was he could send in a doctor's order over fax to them. Well, bam he sent it and then I got to be wheeled out into the snow for 10 minutes to feel it fall on me and just experience it in person. I later found out that this nurse lady was either fired or forced into retirement because this was not the first time that she had challenged my Dr. but it was the last time!

Wrapping Up New York and Returning Home I followed all of my doctor's orders like I feel people should (turns out a lot of people I have met like me are awful at it and thus create a cycle of needing more surgery and then not listening to its an awful cycle) and was able to be discharged the morning of day 6! My dad went home at this point to be with my younger brother while my mom and I had to spend another week to make sure everything was good before flying back home. During my time at Ronald McDonald House, I was straight-up spoiled and could write a whole huge post about how these people who are nothing short of angels come in and spoil us. Several therapy doggos would visit and I was a HUGE HUGE fan of. There are two who I really clicked with and whose handlers are now family friends as well and they check in on me still to this day!

Returning home was so nice but boring. My friends were all in college I wasn't able to travel or do much besides continue going to PT and do everything I could to recover. At the 10-week mark I was able to go on my first run and my heart rate was a mess for the 1 mile I went but it felt freeing to do so again. I few times I overdid it and when that would happen my head would often get stuck in some position because I would have either been looking down for too long or to the side and it would get stuck.

During this time esp. with PT signs of future issues started to emerge. I had always been in multiple sports and really did not have a season off. These sports also were good at playing to each other's weaknesses and so when I ended up being stationary for so long odd stuff started happening. My shoulders for instance started subloxing and dislocating and my ankles and hips would also randomly start to fail me. The biggest sign though was when you have your dura opened it takes thousands of sutures to properly close it to prevent any leaks. Now these are dissolvable sutures so your body should break them down and that that. My body though decided no lets not do that. For the next year, I was "spitting" out sutures meaning they were working their way out of my body coming out of my incision area.

Honestly, it was nasty but it never really from the outside appeared that way. My parents, brother, or friend would just say hey it looks like there is some clear piece of something coming out of your incision. More often than not I could grab it and with the slightest pull it would come right out. Again this was something that lasted for a year and hindsight is 20/20 but the joint issues and the way my body handled the sutures was a huge sign of an issue that was going to quickly pop up.

Whoops I Dropped Out of College With this surgery happening at the beginning of February I spent the rest of the spring and summer healing and getting to the point where I would be good to go for school again. Before my surgery though and when I knew I was going to be out the semester I went and dropped all my classes during the first week of school. I did this to give others the ability to grab these spots but what I did not know at the time was that by doing so this early.... I was withdrawing myself from Texas A&M as a whole. See you have to keep at least 1 class for the first 10 school days so that you pay them at the time I want to say $3k and that would keep your spot. Since I didn't at the beginning of March my mom logged into my A&M account to see when I needed to sign up for classes my login said "Welcome Former Student".

Many phone calls and panics later we figured it out. I had to reapply but it wasn't like applying to college the first time around you pretty much had to write entrance essays but could also provide the information for why you had left in the first place especially if it was a medical reason. Well, I was still on painkillers that did not allow me to write a paper during this time so my dad had to write my papers for me. I did try... what I wrote made sense to me but well it didn't make sense to anyone else.

I had been in the honors program as well so it wasn't like I had bad grades I was at the top of my class and thankfully was able to get back in. Granted they did lose my application (you had to mail it to them) for a couple of weeks but my mom's godparents came in clutch for me (the husband was a professor at A&M for 40 years and the wife worked with the Associate of Former Students so Mrs. Kathy walked right into the President of the University since she knew him and said hey this needs to be taken care of and addressed. I got a phone call from the head of the liberal arts college the next morning.)

Back in School.... uh oh.... After healing up and being cleared by my medical team I went back to school the next August and boy did it feel great! Everything was going pretty well for me to for the first month or so. I had the surgery in February and when I had a virtual follow-up in either October or November, before Thanksgiving break, I did the one thing you are never ever supposed to do... I told Dr. B everything was great and I wasn't having any problems. The headaches though had started to return and something was off I just couldn't pinpoint what it was.

Well I found out and not in a good way. Two to three weeks after the follow-up as I was getting out of bed one morning to go to class I pushed down with both my arms while lying down to push myself up. One loud loud crack and a shriek later one of my roommates was flying into my bedroom and I was stunned... My head was stuck looking straight down. I couldn't move it at all and I had no clue what had happened. Doing what any 20-year-old "adult" would do I called my mom in tears trying to explain to her what had happened and pretty quickly she told me she was on her way and she would be there in an hour and a half.

Update Due to how long this post is (my writing thing says it takes 10 minutes to read) I am going to break off the two other neurosurgeries since this one laid the groundwork for them. Sorry for the change but since yall actually seem to read it I don't want to hit you with a huge book at once!