Five weeks ago I had a spinal surgery to relieve compression brought on by my achondroplasia. I took a break from blogging because, first of all, I’ve only recently been allowed to sit for longer than an hour or two, and secondly, major life interruptions are almost always best discussed from hindsight. (Even though the personal usually ends up being political, this blog is not and never will be a tell-all of how high my temperature is or how my incision looks today.)
I will confess that the hardest aspect was the lack of community. No one at home or in the hospital had the same condition I did. Since several of my readers have achondroplasia or children with achondroplasia, and I myself was ravenous for any sort of information I could get my hands on, here’s a synopsis of the past five months:
One night in July, I noticed I couldn’t sleep on my stomach without the muscles in my left thigh and hip burning with pain. I took some Ibuprofen and applied a hot pack but to no avail. Within a few days, the burning sensation expanded up into my lower back and deep in my backside. It came whenever I lay on my stomach, lay on my back, or walked more than a few yards. Strangely, it disappeared when I was sitting up straight. I had to sleep propped up on pillows to keep the pain at bay and woke up during the night whenever I curled into a new position. I described it as sciatica – which is, apparently, just a name for a set of symptoms and has various causes. Maybe sleeping for five nights straight on a friend’s uncomfortable couch had done it? My doctor gave me a prescription for physical therapy and stronger pain killers, but the medication had no effect and, after three weeks of physical therapy, the symptoms only got worse.
By the time I met with an orthopedist, the burning began to be replaced with a pins-and-needles sensation that ran all up and down my left leg and worsened with walking. Once again, it disappeared whenever I flexed my hips. While the therapists tossed out the usual suspects for usual patients—disc herniation or degeneration, etc.—my family and I had begun to suspect achondroplastic lumbar spinal stenosis. People with achondroplasia are at high risk for this because our spinal columns are exceptionally narrow and become acutely so with age. The symptoms described in the medical literature on achondroplasia exactly matched mine. Between one-quarter and one-third of all people with achondroplasia develop stenosis, usually in their 20s or 30s, and I was a perfect candidate. Average-sized patients with stenosis are usually encouraged to turn to surgery only as a last resort, but achondroplastic patients almost always require a laminectomy. And, according to most specialists I’ve spoken with, the sooner the better.
I hate having surgery. Talking with the anesthesiologist about all the medications I’m allergic to brought back all sorts of unpleasant memories. But I eventually got in contact with an excellent team of neurosurgeons who were very informed and reassuringly confident that a laminectomy (without spinal fusion) would be the best defense against permanent paralysis. And with my 13th operation now behind me, I know several things I didn’t before.
I learned that, unlike orthopedists, neurosurgeons cannot tell you at what time your surgery will take place until the day of, if at all, because emergency cases such as strokes and spinal cord injuries take priority. Your surgery could be postponed by such cases more than once, as mine was. It is surreal to find out you just spent a whole day without food or water for nothing, while also finding out the people who knocked you to the back of line are probably fighting for their lives.
I learned that, contrary to what I had assumed, you wake up after back surgery lying on your back. I was especially grateful for this after my partner pointed out that I had a black-and-blue mark on my cheek from lying on my face for the two and a half hour procedure.
I learned that the day of surgery is one of the easiest. Waking up in the recovery room and discovering I could cope with the pain and seeing myself wiggle my feet sent waves of relief everywhere. Seeing my husband waiting for me in my hospital room was thrilling. And the drugs took care of the rest.
After that, however, each day threw a new curveball, whether it was the pain of moving, the vomiting that came after moving (typical for spinal patients), or the dilemma of never wanting to go to the bathroom because it destroyed whatever comfort I had finally found. Unlike the patients whose stenosis had been caused by disc herniation, I could not walk without a walker after surgery and managed no more than baby-steps. As with limb-lengthening, I learned to take it week by week in order to see that progress was happening, however slowly. By the third week, the worst pain was gone and I could walk short distances without any assistance. (After five weeks, I can now manage a few blocks, though it takes me twice as long as it used to and my balance remains fragile, so I like to avoid crowds.)
I learned that after spinal surgery, walking and lying down are good for you. Sitting and standing are bad for you. I can’t remember the last time I watched so many films in such a short time.
I learned that sippy cups are perfect for drinking when you have to lie flat on your back. They make you look ridiculous/adorable.
I learned nurses are among the hardest working, strongest, most fearless people in the world. No one whose work is free of analyzing other people’s vomit and urine can say otherwise.
I learned (once again) that there is always someone at the hospital about to go through something a lot worse than what you’ve endured. Hospitals have a bizarre way of inundating you with more self-pity than you’ve ever felt before and, at the same time, more sympathy for others than you’ve ever known before.
I learned that as an adult I could see how much skill and patience goes in to being a great caregiver. When you’re a child, you expect—and should be able to expect—your parents and relatives providing unconditional support and tolerance for your needs and your bad moods. When you’re an adult, you’re more likely surrounded by friends and partners; people who choose to check in on you and listen to you and soothe you for three hours straight and accompany you to the doctor and run errands for you and reach things you can’t out of their own free will. You begin to understand the sacrifices your family made and those your true friends are making. Just because you don’t deserve the raw deal you’ve been given doesn’t mean you deserve to take their patience or attention for granted. No matter how bad you think you have it, always, always say thank you to whoever is being kind to you. (And take a break from whoever isn’t.)
So now I have a new scar and hopefully I’ve helped flood the web so that googlers can find information about “achondroplasia spinal stenosis” more easily. In my experience, seeing what you’ve learned, what you’ve been humbled by, is the whole point of having scars.