So what is the meaning of this oddly titled blog you ask? Well, the jist of it is this - I was recently diagnosed with a spinal ependymoma and decided to use this as a way to keep account of my journey through this crazy time and to help update my family and friends of my progress. I've also found that there are not many recent personal accounts from those who have had spinal ependymomas. The majority of what you will find with your basic search is tons of long and not always deciferable articles on clinical studies. Most of the studies are outdated or have very small sample sizes, mostly due to the rarity of this disease, so they don't provide much helpful information. That's the short of it, so if you would like to know more about this new aspect to my life feel free to follow along. You will notice that I do like to try adding humor in (hopefully it is funny and there aren't crickets off in the background somewhere), I don't mean any offense just trying to lighten the mood and not let this take over my life.
This all began when I started experiencing a pain in between my shoulder blades occasionally, especially after waking up in the morning. Didn't think much of it at first, but then started getting jolts at the spot and tingles down both of my arms. The tingles then started becoming more of an ache down my arms, especially my left side, that stick around sometimes for a few hours. Tried to work on sitting up straighter at my desk at work and sleeping with different pillows but nothing was helping. As the pain progressed to being at other times besides just the morning I decided to go see my doctor. My doctor wasn't sure exactly what could be causing this, I'm only 29 and most back injuries at least for people around my age are due to some type of injury. She ordered a chest x-ray, which came back clear, so from there we progressed to an MRI.
Went to the MRI appointment and got to experience that fun for the first time. I wouldn't consider myself claustrophobic, but I was definitely getting a little antsy when they pulled me out and said they needed to inject me with dye for another few minutes of testing. After I was finished they told me I needed to speak with my doctor, which I assumed wasn't a good thing. However at that moment my brain popped up the image of Arnold Schwarzenegger in "Kindergarten Cop" screaming "It's Not a Tumor!" (which a friend texted me before I went back to the doctor).
My doctor sent me to a neurosurgeon after letting me know that something showed up on my spinal cord and most likely we were looking at something needing surgical treatment. (So much for Arnold's advice)
So off to the neurosurgeon I went and after doing some tests of my reflexes and limb strength, which were fine and not giving off the sign something was wrong, the doctor gave me his diagnosis: spinal ependymoma. This is a tumor that grows from the ependymal cells which line the walls and ventricles of the Central Nervous System. Like most tumors, these cells were just fine until some unknown incident caused them to start growing rapidly and form a tumor. Mine runs from the C4 to T2 vertabrae and basically looks like a hot dog (Oscar, get it?). The tumor is rare, but my neurosurgeon was able to give me stories of some patients that he has treated for the same issue who lead completely normal lives now. The main treatment for this tumor is to remove it as completely as possible. Easy enough, right?
What type of fun surgery does this removal entail? Pretty much a scary and crazy description by the neurosurgeon, who makes it sound easy (where's Derek Shepherd when you need him?). I wouldn't suggest searching the videos in YouTube for spinal ependymoma because you will be inundated by something out of an Eli Roth movie. Made that mistake once trying to find doctors discussing it and won't make it again. So for the faint of heart, no worries I don't plan on releasing any videos or going in depth with what will take place. If you really want to know Google it or message me and I can give you a quick overview of the details. I've heard great things about my surgeon and he feels confident the risks of surgery can be kept to a minimum.
So now we know what it is and how they are going to get it out. What does this mean for the upcoming future? Basically in less than a week I will be having surgery, which will have me in the hospital for at least 5 days. After I'm released my recovery will be anywhere from 6-12 weeks depending on how I progress post-surgery. My doctor has high hopes for me to not have any major residual effects, aside from a couple of minor issues I should bounce right back. The process is going to be hard and long, but I'm in it to fight and won't be backing down from this. I will be off of work for a while, but plan to spend my time watching Netflix (already getting some good recommendations for what to watch) and knocking out any rehab I need to do. I'm praying along with my family, friends, and tons of others that everything goes smoothly during this process. I know God is going to take care of me during this time as He always has. I have been blessed with a great life and this is just a way for me to possibly reach more people and spread His love out to someone who is struggling with their diagnosis.
And yes, I named my tumor Oscar. It's a little dumb, but I'm a dork and appreciate the chance to blame things on Oscar. :-)
