This week’s Syringomyelia Saturdays post has been written by a friend of mine called Amy; Amy is a qualified pharmacist who had to give up her profession, after years of education & training, because of her syringomyelia. Amy’s story left tears in my eyes as her experience really has been horrific – nevertheless Amy has stayed strong, even when she hasn’t wanted to. Amy has previously released the page-turning Ride Every Stride & is currently working on her first YA fantasy series (I’ve read the first book & it’s wonderful). This is Amy’s story…
This post contains animated photos of surgical procedures.
When I graduated from Pharmacy school in 2003, I never imagined that my career would essentially be over in less than 2 years. That I’d spend the rest of my life on the patient side of the counter, not the dispensing side. Never mind that I would be the one receiving pain meds (and being subjected to the stigma associated with them).
In February 2005, I was diagnosed with idiopathic Syringomyelia (SM). I’d gone to my general practitioner (GP) complaining of pins and needles, numbness, headaches, and leg muscles that throbbed with a constant flu-like ache. My GP ordered an MRI, both of us anticipating a diagnosis of Multiple Sclerosis based on family history. We were wrong. I remember my GP saying “Well this is interesting” as he read the MRI report—he hadn’t heard of SM since medical school. He told me I had 2 syrinxes. The cervical one, from C4-T1, was 9mm wide while the thoracic one (T2-T11) was only about 2mm wide. He promised to look into it more and call me with the information.
Back at work, I hopped on the internet to see what I could learn on my own. What I read sent me into a panic. I remember breathing heavy, my stomach clenched, my heart pounding. I kept thinking “Get this thing out of me!” and I wanted to claw at the back of my neck. My GP called the next morning, told me how serious it was, and referred me to a neurologist 8 hours away (I live in northern Ontario, far from many specialists).
I saw the neurologist in April, and after examining me she called a neurosurgeon (NS) and he saw me right away. Since my SM was idiopathic and not associated with Chiari Malformation, he believed that decompressing the area around the large cervical syrinx via a laminectomy was the best course of action (in a laminectomy, the back part of the vertebra is cut out in order to open up the spinal canal; you can watch an animated video of a laminectomy here). They would also perform a duraplasty—slice along the sheath of tissue around my spinal cord and insert a donor graft, like adding an extra panel to a skirt. The goal of the 2 procedures was to give my cord more room to breathe, so to speak, and hopefully collapse the main syrinx.
Just 3 weeks later, on May 13, I went under the knife. The pain following the surgery cannot be described. After all, 5 of my neck vertebrae were no longer intact. Sitting up for the first time truly felt like I had an elephant on my head. They sent me for an MRI less than 24 hours after the surgery to see if the syrinx had shrunk. I cried through the entire scan and by the time they wheeled me back to my room, the agony became so unbearable that I lost my mind, screaming and writhing. And the syrinx hadn’t shrunk at all. Three months later, at a follow-up appointment, it was confirmed that the surgery failed.
I went back to work. My symptoms continued to worsen and multiply. Daily headaches. Neck pain. Knotted, aching upper back, neck, and shoulder muscles. Burning pain that radiated up and down my arms, right into my pinky fingers. Cramped and aching legs. Pins and needles. The feeling of ants crawling on me, biting me. Profound weakness of my arms and legs that would come and go related to activity levels. Difficulty concentrating and with my memory. The final straw was when I started to experience bladder-related symptoms. I went back to the same NS, who recommended a shunt be inserted. He asserted that the shunt wouldn’t be a cure. The spinal cord and nerve damage is permanent and I’d never feel any better than I did that very day. The hope was to stop the progression, or at least slow its rate.
Surgery #2 took place September 25, 2006. They once again sliced through the tissue surrounding my spinal cord, only this time they also cut into the cord itself, exposing the inside of the syrinx. Using pediatric cardiac tubing, they inserted 2 shunts, one running up inside the syrinx cavity and one running down it. When I woke up, I couldn’t feel my right leg. It was terrifying. When I tried to walk, I couldn’t judge where my leg was (in front of me, behind me, directly under me) or even if my knee was bending. Over the next few days, physical therapists helped me learn how to walk on it. Other than that, recovery was much easier and quicker than the laminectomy surgery because bones hadn’t been sawed through and removed. The majority of the feeling in my right leg eventually returned.
I tried to go back to work on a part time basis. I could not even handle two 3-hour shifts per week. My career was over. I was only 32 years old and still had tens of thousands of dollars in student debt for a job I could no longer do. I applied for Long Term Disability. The insurance company sent me to Dr. Tator (Canada’s foremost expert in SM) for an assessment. I think they hoped he’d say I was well enough to work, but instead he said that I would never be able to work “in any job, at any capacity” ever again.
So here I am, 42, single, no children, no medical benefits (after my condition was deemed permanent, Rexall severed their ties with me, cancelling all my insurance coverage). The shunt surgery was successful in that it did drain and mostly collapse the cervical syrinx and it has slowed the progression of my symptoms. However, the pain, fatigue, and brain fog do continue to worsen. I spend my days curled up in my recliner watching TV & movies, reading, playing World of Warcraft, writing when I feel up to it, and playing with my beloved pets (without whom I’d have no reason to get out of bed every day). I sleep about 12 hours per day.
I was always very active and physical. I grew up riding horses and competing. One of the reasons I became a pharmacist was to be able to afford that lifestyle for the rest of my life. Now, I can’t even brush a horse without terrible pain. I’ll never ride again, and I miss it with a physical ache that sometimes overwhelms me. I’ll never have a family. I’ll never run again, or lift weights, or unload shipments of hay bales like I used to. This is far from the life I imagined for myself, yet at the same time I’m relieved because I’m not as bad as I thought I’d be by now.
I’ll always miss my old life. The old me. The children I’ll never have. For a time, I avoided anything to do with children because it hurt too much. I’m finally at the point where I can (usually) enjoy them without it breaking my heart. When it comes to horses, I still struggle. I go through periods where I can’t watch show jumping coverage without sobbing, and other periods where I can enjoy it and simply be grateful for the opportunities I had growing up. As for my career, I’ll always miss it. I’ll miss helping people. Making a difference.
Depression has been a lifelong battle for me, and even more so since getting sick. I’ve cut. I’ve been suicidal. I still have days where I just want the pain and constant fatigue to end. On those days, the bottles of medication are oh-so-tempting. What makes it even more difficult is that so many people don’t understand my condition, and in not understanding it come to doubt its severity and legitimacy. I’ve heard of people, even family members, saying that there’s no way I can be in as much pain as I say I am. That I should be working and not on disability. That I’m a drug addict. It’s devastating. I have people glare at me for using handicapped parking because I don’t look sick (unless you see the giant, ugly scar that runs from the base of my skull to between my shoulder blades). I didn’t spend 9 years in university because I wanted to sit at home all day, every day, alone. I didn’t choose this. Who would?
I hate syringomyelia. I hate feeling like a burden—there are so many things I can’t do for myself. I hate that my loved ones worry about me. Yet at the same time I’m grateful to my illness. A strange thing to say I realize, but SM woke me up to what really matters in life. It’s not money and possessions, as I used to think. Despite how all of the above might sound, I am happier than I’ve ever been. I’ve come to appreciate that the ‘little things’ in life are actually huge.
I love my family. I love my furbabies and their antics, and their cuddles. I love the warmth of the sun on my skin. A fresh breeze. The crackle of fallen leaves beneath my feet. Most of my dreams will never come true, but that doesn’t mean I can’t make new ones. And I can still make a difference. In animal welfare and veganism, I’ve found a new purpose in life; this new purpose brought about my new dream — to have the means and opportunity to open a farm animal rescue. I would name it Boomerang Farm, in honour of my golden retriever Boomer, whom I lost to cancer at the age of 9.
I wish I could go back in time and do it all over again. I’d relax more. Enjoy things more. Laugh and smile more. Take less for granted and overcome my fears. This will never be, but what I can do, what is still possible is the ability to live that way moving forward. Life is too short to spend it wallowing in negativity and self-pity. So I’ll keep fighting the fight, enjoying what I can when I can, and above I will do so with love, gratitude, and kindness in my heart and in all I do.