(Slideshare.net)
I'd like to tell folks about my story and how I developed Conus Medullaris Syndrome. It is extremely rare but if surgery happens within the first 24-48 hours of the first symptoms, you can get much better and even had no lasting effects. However, if it is longer than 48 hours after the first symptoms, you are essentially stuck with whatever issues you have developed.
Like I said in my introduction blog, I am a father of 2 amazing kids. A son and a daughter who are my world. They are the reason I wake up every morning and take a breath. They are also what drove me to learn how to walk again. Let me explain...
In September of 2015 I had to have emergency spine surgery. I was told I was a sneeze away from being paralyzed.
I had a disc herniate and rupture into my spinal cord which left me with the diagnosis of Conus Medullaris Syndrome. I am really lucky. Not because I have this super rare diagnosis, but because I had the will to not let it beat me.
You see most people with Conus Medullaris Syndrome or the similar Cauda Equina Syndrome have drop foot, have to use walking aids to walk, or may never be able to walk again. Well, I am too stubborn for all of that in my life. I was NOT going to let it prevent me from walking or hiking with my kids or camping with them. I worked my ass off to get back to 95%. I will never be 100% due to the injury, but I am better than most.
(inspiredsciforum.com)
It started out as minor pain one morning when I woke up but it got worse every morning after for the next 3 days. I could not sleep. I could not get comfortable sitting, standing and especially laying down. The pain was too bad. Day 5 I had decided I was going to the Emergency Room.
You see, I started having the first symptoms and went to the ER to be treated like a drug addict pill chaser. I noticed that when I went to wipe my backside after using the restroom that I could feel the pressure but could not feel the sensation of touch when doing so. They did no tests whatsoever and I was treated terribly.
When I went to my doctor 4 days later it was horrible. The pain was out of this world, I had lost bladder function, I could not sleep, walk for any distance, sit for any length of time, and hardly stand up after sitting or laying down. I went to my doctor's office and told them the symptoms and they told me to sit down and do not move. I got REALLY nervous at that point.
The nurse came in and told me I had to be rushed to the Hospital in Columbus, Ohio that was over an hour away. This was a Tuesday. The problem I was running into is that I, nor my now ex-fiance, got paid until the next day and did not have the gas money to get there. When I told them that, the nurse gave me $20 from her own pocket to get gas to and from. It was at that point, I knew it was VERY serious.
It was so bad they could not do an MRI with me awake.
I had to be put under anesthesia to get the MRI because when I laid down, it was like someone had a blow torch to the back of my legs. Well, after the MRI and they woke me up, my left leg would not move so they rushed me into emergency surgery that was 9+ hours.
50 staples and some titanium to fuse my spine later, my left leg still would not work.
I made it work within 3 days. I had knee surgeries before so I did quad sets until I got it working on my own. I refused to lay in that bed and quit or feel sorry for myself.
About a week later, I was sent to an inpatient rehab facility for nearly a month where I fought every day to make progress. I went from a wheel chair to a walker to a cane to no walking aides at all in just about 2 months.
(Physio-pedia.com)
I beat the odds and did almost everything they told me I would never do again. Because of my kids, I fought and had the will to do it as opposed to just roll over and give up. My Monsters are my life.
Without them, I would probably not be here writing this today because I would have never fought back to get better.
I have recently started college to get a BS in digital photography because I refuse to let this "disability" beat me. I want to be an inspiration to my kids and to others to fight and never let anything hold them back from their dreams and goals.
Below is the second video I posted about my journey with Conus Medullaris Syndrome if you are interested in a little positivity from the perspective of a person dealing with an invisible disability. If you have ANY questions about anything I talked about, feel free to ask because I never want someone to have to deal with this like I have.