How I Fought for the Brain Surgery That Completely Changed my Life
I’ve lived a fairly normal, mundane life. Sure there have been twists and turns, loss and heartache, incredible excitement, the expected and the unexpected. But there was always a dimness to my life. I’ve never known happiness. Not to say I haven’t been happy, or I haven’t had moments of joy, but for the most part, even the most amazing times in my life have been peppered with an ache. It has always been as if the proverbial other shoe was going to drop at any moment. I can count on one hand the moments when I felt blissful and content. It is just who I am. How I am. It has been my reality since childhood.
Around the age of five, I started to complain to my mom about headaches. I remember seeing “floaters” at times. I remember sitting at my desk in first grade with my head down wishing I could go home because I didn’t feel well, but then feeling fine a couple hours later.
When I was 11 years old, on Easter Sunday, a headache suddenly came on that was so intense I couldn’t open my eyes, could hardly walk, couldn’t think. We left brunch and drove right to the pharmacy for Children’s Tylenol, where I ate one and immediately threw up brunch everywhere. And just like that, it was as if a pressure valve had released and my headache had immediately and fully dissipated. That moment was the beginning of more “nausea spells” and “migraines” and spurred a really annoying and severe fear of vomiting. The following ten years felt like one giant panic attack. Amidst this, at age 17, my father suddenly died. Enter in a diagnosis of clinical depression.
By my 20th birthday, I was being medicated for migraines, anxiety, depression, and later on, after I failed out of college my first try, ADHD, and I also struggled with severe OCD. After I had my children in my mid twenties, I was diagnosed with PTSD, postpartum depression, and began experiencing symptoms of a more physical nature. So aside from the nausea spells and dizziness that would come on as quickly as they would go away, and were dubbed “panic attacks,” I now was experiencing severe sciatic pain down my legs, tingling and numbness in my hands and feet, a toe that had no sensation or feeling whatsoever, and the headaches I had experienced since childhood increased in their quantity and severity.
I called them “pressure headaches” and as a kid they would come on maybe once a month. A strong and quick pang as though my head was a melon in a vice, manifesting after coughing, laughing, yelling, blowing up a balloon, getting overly excited, bending over too quickly, standing up too quickly, would debilitate me for a solid minute and then fade into a dull ache that lasted all day. But after having kids, they were no longer coming once a month. They would hit me 20 times a day. I stopped laughing, I had to actually restrict myself from watching comedies. I had to prepare myself and take a deep breath every time my husband showed me a funny meme. I took deep breaths before bending down to pick up a fallen sock, before hollering for a kid to bring me a roll of toilet paper, before going to parties, before doing just about anything. My entire life was now one big headache.
So I did what any sensible person would do, as did my mother when I was a child, I went to the doctor. Again and again and again, hence all of the fun diagnoses aforementioned. But none of them added up. My body was falling apart. My mind was foggy. I was exhausted and in pain and struggling just to be present for my kids.
The doctor would seem sympathetic at first, run blood work, then tell me everything was fine, prescribe me an antidepressant, and tell me to lose weight. Because, oh yea, somewhere along the line, I had gained insane amounts of weight. I’m talking 60 pounds in one year. I attributed the bulk of it to the antidepressants, but I essentially weighed at least 20 pounds more than my heaviest pregnancy weight. For reference, the day I walked out of the hospital after having my youngest son, and for a year after, I weighed 50 pounds less than I did once my weight skyrocketed a couple years later. I was miserable and then I was fat and miserable. So of course, the amazing answer was lose weight! I would try and sometimes succeed a bit. Then the doctor would say, "Eh, everything looks normal, let's just wait and see." And then I would change doctors, rinse and repeat.
I was not convinced. I knew something was going on that they were missing. I begged doctor after doctor to look harder. And doctor after doctor came to the conclusion that I was manifesting my issues, that I was allowing my stress and depression to cause my physical pain. I felt like I was going crazy. Part of me was like, “Chelle, you are your only advocate! You need to fight for answers!” While the other part of me was saying “Chelle, just admit that you are emotionally unstable and are being sort of a hypochondriac and maybe need to get in to see a better therapist.”
So, I was at the end of my rope. I knew something had to change and I promised myself that I had one last fight left in me and if everything turned up okay, I would force myself to make big changes for a healthier life. I went to the doctor and I cried. I yelled a little bit. I got really upset. And I demanded that if she couldn’t tell me what was wrong, then she needed to send me to someone else who could.
She gave me a pamphlet for a medical weight loss program, a prescription for another antidepressant (that I told her I would not take), and, begrudgingly, a referral to a neurologist.
The specifics of my diagnosis are enough to write a novel, so for now I’ll keep it short and sweet. They found something. Something that I was born with. Something that could be the cause of every migraine, every nausea spell “panic attack,” every back pain, every pressure headache, my numb toe, my tingly fingers, my clumsiness, my foggy brain, my endless fatigue. There it was on my MRI in black and white (literally): Chiari Malformation and syringomyelia. In layman’s terms, my cerebellum was being squished into my spinal column and was causing a blockage of my cerebral spinal fluid which subsequently caused a sort of cyst in my spinal cord. The only treatment for CM is brain, skull, and spinal surgery. And I was a perfect candidate.
I was gobsmacked. I was in disbelief. I was coming around to the idea that it was all in my head. Turns out it really was all in my head, in a far more literal way, and I didn’t know how to process that. My reality was exploding before my very eyes. I had been told for so long that I was subconsciously creating this entire universe in which I was in pain and too exhausted to function, but here I was face to face with proof that my body was responsible, not my mind.
So I had the surgery. It sucked. I won't sugarcoat it. The pain just cannot be quantified. But I would do it over and over again because now I can feel my toes. Now I can go not just hours but months without needing Advil. I can sneeze without wanting to die. I can laugh without crying out in pain. I can be a mom who is present.
But while being on the other side of surgery is a lot less painful, a lot more fun, and a lot more hopeful, I find myself unable to decipher reality from fiction. Not to sound dramatic, but my life feels like a lie. It seems unreal. Trying to navigate a life while feeling okay for the first time in forever is pretty scary. Who am I if I’m not feeling crappy? What would I be doing now if I had felt this way, the way I should feel, since childhood? How do I get past the resentment and anger surrounding my 30+ years-late diagnosis? How can I trust a doctor again? Will I ever be able to feel unwell and not go to the worst case scenario in my head? Part of my existence relied on the fact that I could explain away my ailments by telling myself I was creating it. “This isn’t real. This is just anxiety. Calm yourself down and it will go away.” Now a stomach ache has me wondering if my doctors missed something else. A slight headache has me wondering if my brain is slowly slipping back down into my spine.
Recovery is still ongoing almost nine months post-op. I’m still in physical therapy, mostly to reverse decades of tension in my neck and shoulders from trying to stave off pain that I didn’t even understand the severity of until it was gone. I also started seeing a therapist of another sort to manage these emotions and navigate the waters of feeling “okay” for the first time in my life. On our first visit, I told her I felt like I should be doing more, I didn’t feel like I was enough. Now that I was recovering, I should be finding a job, working toward a career path, exercising more, losing more weight, making goals for our future, finally tackling some old dreams that never came to fruition. That I’m feeling like I’ve wasted years on feeling crappy and have nothing to show for it. “No,” she said, “right now there is nothing to plan. Nothing to fix. Nothing new to undertake. You’ve done a lifetime of work. You’ve done the fixing. Now you get to just be, and it’s going to be really hard.”
So right now I’m in the car listening to the radio, waiting to go in to my first grader’s classroom to read with some kids. I’ll go home and take a nap, maybe clean some dishes, fold some laundry, help my husband get the kids off to jiu jitsu, make dinner that half of my family might turn their nose up at, listen to my second grader grumble about homework, and kiss my kids goodnight. I won’t worry about tomorrow or how I am 34 and don’t have a fancy career and haven’t done anything with my degree. I’ll be grateful for today and for the improvement I didn’t even know was possible. And I can’t help but thinking, “so this is what happiness feels like.”