I’m a 30-something cervical myelopathy patient, and this is my story. I encourage you to read the Introduction post to get a better understanding of me. 😊
What is Myelopathy? Myelopathy is defined as :
“describes any neurologic deficit related to the spinal cord”.
What is Cervical Myelopathy?
The cervical region is comprised of the neck vertebrae which are labeled C1-C7. So by the previous definition it would be a deficit located in the neck.
What’s this site about?
So throughout this almost 3 year journey I kept getting frustrated that there just wasn’t a whole lot of information on the internet about myelopathy patients. I can understand why. Myelopathy is a complex diagnosis and can manifest a myriad of different symptoms. So by taking this blog and turning it into my emotional therapy for this journey – my hope is that someone out there can read about my experience and learn something – whether they have myelopathy or not.
My Myelopathy Story
It all started with waking up with a kink in my neck in 2009 that never went away. After going through a divorce the following year I attributed the increased pain due to stress. In 2011, I lost 4 family members in 6 months and my job just 2 weeks after the last family member passed away, during the market crash. Again, pass pain off as stress related. During this time i was in chiropractic care where they just saw bone spurs and arthritic changes in X-rays. After losing my Cobra coverage I remarried in 2012 and immediately sought out a new doctor who ran X-rays (again bone spurs), blood work, and even MRI’d my brain as I was frequently having bad headaches at this point. So it was officially written off as Fibromyalgia. I really didn’t have any blaring symptoms other than constant pain and occasionally my fingers would get numb which I attributed to being in IT and constantly typing. Some of the medications seemed to help, and after several rounds of physical therapy, during my latest round of PT in April 2015, my physical therapist said something doesn’t seem right and to urge my doctor to MRI the neck. During this time I earned a promotion to my dream job after working up the ladder for 20 years without a formal education. I started that job officially the first week in April 2015. So I finally got my MRI ordered, and was in the machine 2 days later. I remember joking with the technician if she saw any aliens in there but she said no, no aliens. It was first the tone in her voice that gave me pause but I had no idea my world was going to be shaken up like a snow globe.
I didn’t even make the 5 miles home before the imaging center called my doctors office who in turn called the neurosurgeon to get me on the calendar ASAP. I made it home popped my disc in to take a look, and while I didn’t know what exactly was wrong, I knew this image didn’t look right. The doctor called me within 10 minutes of being home with the news that I needed to go to the see the surgeon in a couple of days and they would release the report to the medical app on my phone as soon as the radiologist was finished writing it.
The entire section of C4-C7 was blown out and my cord was being compressed and even buckled at C6 and was showing an abnormally high cord signal. So I did my research and was prepared to hear the term ACDF at the surgeons office. I wasn’t panicked or scared if anything I was relieved, the source of my problem has finally been found, I would be fixed and go on my merry way. Even though I did get the warning that there may be permanent damage.
I’m wasn’t sure why my family was flipping out while I was completely fine with it. They do the surgery, I’ll recover and go back to my newly landed dream job and resume my life. Boy was I in for a rude awakening. The surgeon came into the room where I was sitting in the chair and my sister in law was on the examination table. I’ll never forget the words “I’m amazed you walked in here, one fall or little fender bender and we wouldn’t be having this conversation”. Which freaked my sister in law out but again I was calm and had the attitude let’s do this so I can resume my life. Surgery was given the first available day, a little less than 3 weeks to get all the pre op done and make arrangements with work.
The one scene pre op that sticks out to me is my primary care doctor looking at my history and realizing this will be my first surgery ever said “Well you really do go big or go home”. Again, not even remotely realizing the path ahead of me.
The day before my surgery was Mother’s Day and my family and my 11 year old son all went out for steak as my “last meal”. I was in good spirits and was looking forward to being pain free. May 11, 2015 came and I was the first on the schedule. So the whole Motley Crue of my family (minus my son) was there at the hospital at 4 am. They wheeled me into the operating room and the last thing I said was “Cut me Mick” in reference to my father and I woodworking the past summer building patio chairs.
I woke up in recovery in the hard collar and heard my parents playful banter about underwear shopping and I quipped that I didn’t need to hear about them shopping for BVDs and they looked at each other said Yep she’s fine and left the hospital. I didn’t keep my husband there long either as 4 years earlier my mother in law passed away in the same unit of the same hospital I was housed in so I let him get back home to the dogs.
I spent 6 weeks 24/7 in a hard collar (yes I even had to shower with it) and it took another 6 weeks before I was clear to go back to work and my interrupted promotion. I went back to work thinking my body just needed time to heal. But I was so wrong. Every day back was harder than the day before. The pain, the weakness in my limbs, the chronic fatigue, the numbness, the myoclonic jerks, my legs constantly felt like I’d ran a marathon, it very much felt like being trapped in a broken body. I didn’t even last a full year back. I was on 12 different medications including 2 opioids at the time the doctor told me I wasn’t going to improve anymore and it was time to give up my career. It was the hardest decision of my life. I was only 36.
While I’m currently on long term disability, things haven’t improved but the decline has slowed down. This disease has robbed me of my independence and my family of the energetic and vibrant wife, mother, and daughter that seems like a whole other lifetime ago. It is something I wouldn’t wish on anyone.