Here is the third part of my medical journey! Sorry for the delay I had to work at the front for work yesterday... I hate that lol! If you are new part one is here #647175 and part two is here #648403!

Now, picking back up from where I left off in Part 2 my neck had made a god-awful popping noise and was stuck looking down (think chin to chest) and it felt off but I could still move the rest of my body. I called my mom and she was on the way and one of my roommates was sitting with me till she got there because no one had a single clue about what might have possibly happened. As far as everyone had known I was doing good I didn't have any issues. When my mom arrived she gave me a quick lookover and drove me to the Baylor Scott and White Hospital in College Station and called my neurosurgeon to find out what might have gone wrong. 

Once we got to the ER and walked in, I got a chuckle at how what had happened freaked out the ER staff. At first, they brushed it off but when I turned around to show them the scar on the back of my head they switched up really quick! However, they immediately dropped the ball because remember my head was stuck down chin to chest and they forced my head up to fit a C-collar on me thinking I might have broken my neck. In this situation that is not what you would do at all I later found out. Instead, they should have just stabilized my neck but alas that was not what they did. 

By doing this they caused an ungodly amount of pain and I have a pretty high pain tolerance. The nurse who took over once they got me in the back knew that basic pain meds were not going to help given my medical history so she had to go find a doctor to sign off on this. Luckily whatever doctor was there quickly did and so I was able to get one round of good pain meds. This doctor never made an appearance in my room though and instead, some 60-year-old male PA showed up. 

Now this guy was something let me tell you. I truly do not know how to put into words how terrible of a medical professional he was. In the medical sphere, you roughly have your nurses -> physician assistants -> doctors -> surgeons/specialists. Taking the little chart I just threw together into action the guy was not an expert. When get came into my room the arrogance and I figured it out yall need to leave was crystal freaking clear. Not only did he immediately dismiss my concerns and honest to god my medical history (THE FREAKIN BRAIN SURGERY) but because I knew my pain meds he made comments about how I was just a drug seeker. 

Bless my mom she listened to him and how he set me up for x rays but they would not show anything so we should be getting out of here shortly and told him well here are the tests that the neurosurgeon is asking to be run because my son is correct there might be something wrong. After trying to debate my mom he had the audacity to say he didn't believe us and not asked but demanded to speak to my neurosurgeon. When my mom texted my surgeon what was going on he called and the PA CONTINUED TO ARGUE WITH HIM. This PA was truly a wild insane guy. Finally, he backed down and ordered the freaking MRIs and CTs but he waited so long the techs had gone home for the day and had to be called back into work! He also had ordered the incorrect X-rays and even if I had broken my neck these X-rays would likely not show it! 

The poor nurse who was stuck with my mom and I kept apologizing for the PA's attitude and treatment and since we had been in the room for 4 hours at this point offered and bought us food to eat since we were both hungry. She also worked some magic to get me another round of meds that I was starting to need. Literally hours after we went in and got situated in the room and got our tests approved the tests were all ran and my neurosurgeon briefly looked at them and told us I would be okay for the night but to head back to Houston and we would talk in the morning. 

The following morning Dr. B informed my mom what he thought was wrong but there were a series of things that we needed to do to confirm it. First and foremost I needed to get this machine thing that you lay down and put your head on and pump an air pump. This device pulls your head up and in my case into the position it needs to be. If this did not help me then that was going to hint at there being another issue however it did and so I had some regiment of doing it. I would have been thrilled with doing it 24/7 but well that was even worse for me. 

Next up and because of how bad the hospital had been I needed new MRI scans with me looking up and down during the scan. Luckily I was able to get those knocked out in just a couple of days and sent them off to Dr. B who quickly responded with "You have to come back up here." All I could think was "yayyyy cant wait." During this time as well I was bouncing back and forth between Houston and College Station trying to finish up my classes. Well, I got close and my professors worked with me going way way way above and beyond but I ran out of time and had to have two marked as incomplete. This meant I had one semester to finish them up or they would go from incomplete to failures. 

Roughly December 18th of 2016 I flew back up to New York for the next operation. Now it sounds a lot worse than it is that's not to say it isn't easy or exactly the safest thing but it was called an Invasive Cervical Traction. Essentially I had what is called a Halo screwed into my skull and then Dr. B would put weights on the back of the pulley system. A healthy non non-compromised person can hold 40 pounds and their head will not move more than a few millimeters. Well, guess who failed this test at a whopping 5 pounds.... if you guessed this kid then ding ding ding you win! What was so wild about this was that it turns out my optical nerve was being affected by the compression as well as my eyesight improved during the test! 

The results were crystal clear now I had craniocervical instability and needed fusion surgery to fit this. Now what would happen if I didn't get the surgery you might wonder? Why the answer is death! On your C1 there is a part called the Dens that sticks up. Welp for me this piece of bone was bent due to the weight of my head and my body's inability to hold my own head up. If this broke then it would send the Dens right into the good ol brain stem! This was also the final and conclusive evidence my doctors all needed to begin to treat me as a patient who had Ehlers–Danlos syndrome something that had become more and more apparent with my recovery from the first surgery. 

Ehlers-Danlos or called EDS for short is at its core a connective tissue disorder. There are 13 separate types and some people have a couple of them while others might only have a single kind. Connective tissue is what most of your body is made of with the exception of epithelia, musical, and nervous system tissues. Your bones, ligaments, tendons, blood vessels, organs, etc. are all types of connective tissue so based on what kind you have there are numerous factors to keep in mind. One of the main ways that they diagnose EDS deals with a muscle biopsy and it is a lot of work and waiting compared to finding out the way I did which was ya know here are all these issues and EDS and Chiari go hand in hand. I do not know exactly what form/kind I have. We know now I have hypermobility and I have all the various skin issues so I act accordingly. The other more refined types honestly are ones I would rather not know I have because of the long-term implications and it is not necessary to actually know so hence the why bother idea. 

The stay in New York was super short and I was back home on December 23, just in time for Christmas, where I got to psychologically prep myself. My surgery was going to be on January 25 and Dr. B was very upfront with me that getting opened up a second time was going to be much rougher. If we had known I had EDS before the first surgery I could have gotten the fusion at the same time however since we never even remotely thought about it we never investigated. The incision was also going to be a lot larger roughly 8 inches or double the size of the first one and the operation would take 7 or 8 hours if not a little more. 

I flew back up to New York with the same plan parent-wise as I did the first time around. My dad was going to join us the day before and then stay for 8 or 9 days and go back home to help with my brother. There are a ton of caveats to this time around regarding my personal life but I will save those for another time because it makes quite the story was well... plot twist I was kinda sorta engaged at the time and my fiance was also currently staying at the Ronald McDonald House of Long Island where we had met after my first surgery. Back to the story at hand though I got to New York a few days early so that I could do some things in the City that I wouldn't be able to do after the fact for instance I love M&M World and you bet I made my mom take me there! 

Going into this surgery I was a lot more at peace with everything. Yes I might only be 20 and yes this is a lot and ridiculously hard both physically and mentally but this surgery would finally put another set of issues behind me and hopefully allow me to pick up with my life again. It was awful being as isolated as I had been in Houston and unable to do much at all this would be a huge step to fix it so I was ready for it. I think my parents were as well. They had seen how much the first surgery had helped and applying that logic to this one there was only up from here! 

The surgery itself went well. Overall, I believe I was under for 9 hours and one of Dr.Bs top right-hand man was privileged to shave my entire head once I was out. Thank goodness Phil's life didn't depend on his hair-cutting ability because well it was awful I had sections of hair not shaved all the way down like other sections were and my mom later had to trim me up. This surgery fused me from occipital (skull) to C2 with two titanium rods and six screws.  Once I was out of surgery I was stuck in recovery for a long time because well there wasn't any room on the floor of the hospital I was supposed to go to. After a couple of hours, the hospital made a decision that will forever be burned into my mind and that was to "temporarily" put me in the critical care area. 

For those who do not know critical care is well where they put people that are going to die. They either signed DNRs or something else went wrong and so it was quite an experience... It was important for me to get up and walk around and the first day or so I did it nurses would be thrown off seeing me walk laps around the floor because well these patients were not getting out of bed. Something that I think added to the confusion for nurses of why I was up and moving around was that I was also wearing a C-collar. I can firmly say I absolutely hate nothing more than a C-collar and I am 99.9% sure the devil himself couldn't have created such an awful device. In total I was down in critical care for a little over 2 days before I was able to be moved to the correct floor.

Unlike the previous two surgeries were I was able to get out ASAP this one I was stuck for almost a week. The pain was much much worse this time around like I had been warned and I hated taking the pain meds as well. This was the strong stuff, it was super addictive, and I knew people within my little community at the time who were hooked and couldn't live without it. I was 20 and didn't want that for myself so I ended up having to stay at the hospital I believe it was an extra day and a half before I was released back to the Ronald McDonald House. 

As I have written about previously the Ronald McDonald House (RMH) is a beautiful place. I was on the old side for sure but that did not mean that there wasn't anything for me to do they had numerous things from video games, books, and people to talk to. During the three times, I spent there I was given numerous gifts and they ranged from blankets and jackets (North Face donated a bunch during this last trip so I was able to actually get a pretty decent zipper jacket it wasn't a puffer or anything that expensive but it was a nice solid jacket I still use to this day) to gift cards and other items like that.

Earlier I mentioned on how on this trip my Fiance at the time (I will write about her cause I never proposed but managed to get engaged.... its only something that would happen to me) was also at the Ronald McDonald House of Long Island seeking treatment from Dr. B. I think it is safe to say that there were give or take a trillion red flags that I ignored but it was once I returned to the RMH that even in my drugged up state started to see them.

First and foremost in the roughly week I was in the hospital she never visited even though she was close by and they had a car. I was able to get visitors so it was odd to me that she never really checked in to see if I wanted her to visit. The other issue was that up until my return to the RMH after surgery my Dad had never met her since we had only known each other for roughly a year and she lived in Ohio while I lived in Texas. My Dad being from the south is huge on first impressions and so when I tried to introduce Bailey to him she was horrible. He would try to talk to her and she would either be short or not answer, she got into a yelling match with her mom, and she kept wanting me to go lay with her in her room and not socialize. This was all within I kid you not a couple of hours of me being back at the RMH. Just wild behavior if we are being honest. 

It was safe to say her impression might have been the worst impression one could have left with my Dad. Her parents were better but her dad gets some getting used to because he is so brash and animated and her mom is quiet and shy so it was a lot for my poor Dad to have to take in all at once. He stayed with us at RMH for a couple of days due to how rough it was for me and how I was trying to wean myself off of these strong painkillers at an accelerated rate. For reference, I had my surgery on Jan 25 and by Feb 12 I had successfully tapered off the meds for the first time. Only a couple of days after my Dad left did one of my favorite things of all time happen that I will never in a million years forget the New York Islander Wives cooked dinner for us.

I have written more but due to the length I am splitting it here and making it a Part 4! Thank you to everyone who has read this and left kind and encouraging words it means a ton!