When Life Wobbles: Living with Superficial Siderosis After Chiari Surgery

Life doesn’t always fall apart in dramatic, earth-shattering moments. Sometimes it wobbles—quietly, unexpectedly, and in ways you don’t fully understand until much later. For many of us living with rare conditions like superficial siderosis, the wobble becomes a familiar companion. My own journey began after a Chiari decompression surgery in 2018, long before I’d ever heard the words “superficial siderosis,” let alone imagined they would become part of my life. I wasn’t searching for symptoms or expecting bad news; I only knew something felt wrong. What followed has been a path marked by imbalance—physically and emotionally—but also one shaped by resilience, community, and the determination to keep going, one step at a time.
My story is the result of a chiari malformation decompression procedure in 2018.
My journey started long before I even knew what SS was. Back in 2018, I underwent brain surgery—a decompression procedure for Chiari malformation. I hoped it would be the beginning of some relief, a turning point. But by 2020, I could tell something wasn’t right. It was during a routine MRI that things began to unravel again. More tests followed—gruelling, exhausting ones—and that’s when they found the real culprit: superficial siderosis. They also discovered a lump on my clivus bone (I had to look up how to spell that, too).
By then, I'd already been through so much. I had survived cancer at 26. I’d undergone open heart surgery, and now live with three artificial valves. I have lupus (SLE), osteoporosis, and a list of other health issues I’ve long since stopped counting. But I’ve always just put my head down and gotten through it. I never wanted to be defined by illness.
When they told me SS had no cure, I felt like the floor fell out from under me. I remember the moment clearly—I was in hospital, wheeled into a side room full of doctors. My surgeon, the professor who had done my earlier surgery, started to explain things. I tried to listen, but the words bounced off me like rain on glass. “No cure.” That’s all I heard. That’s all I could hear. I went numb.
I didn’t want to know more. I didn’t Google symptoms. I didn’t ask too many questions. I just wanted to live. I figured if I took things as they came, maybe I could stay afloat. But it hasn’t been easy.
Balance and coordination are my biggest struggles now. I’ve fallen so many times—bad falls—ending up in hospital, even needing surgery. The headaches are relentless. I’ve lost feeling in my feet. I’ve had involuntary movements that left me terrified. Sometimes, just walking is a battle.
And behind all of that is the emotional toll. I was married once, but when I got diagnosed, my husband took it upon himself to adjust my medication. That’s a whole other painful chapter. I never thought something as life-changing as illness could bring out the worst in someone I trusted. But it did.
Still, I’ve always prided myself on not letting anything keep me down. Cancer didn’t. Heart surgery didn’t. Even when my body gave out, my spirit didn't. But SS… it’s different. It’s rare. It's isolating. People don’t understand it. And that ignorance can be just as painful as the symptoms.
I tried to carry this on my own for a long time. I thought I had to. But joining a support group changed everything for me. Suddenly, I wasn’t the only one anymore. I wasn’t just “the one with the rare thing.” I found others who got it—who didn’t need me to explain why I wobble when I walk or why lights make me squint. I could breathe a little easier.
I’m still learning what SS really means. I’ve kept it at arm’s length, mostly out of fear. But I know now that turning away doesn’t protect me—it isolates me. That’s why I’m sharing my story. If my voice can help even one other person feel less alone, then this is worth it.
I may not have all the answers, but I have hope. And community. And for the first time in a long time, I don’t feel like I’m walking this path alone—even when my balance wavers.
– Deanne Lambert