Living with Brown-Séquard Syndrome (BSS) presents a unique set of challenges. The condition affects movement and sensation on different sides of the body, leaving individuals with motor weakness or paralysis on one side and sensory loss on the other. But beyond the clinical facts, the day-to-day experience of those living with BSS paints a vivid picture of resilience, adaptation, and determination. Every individual's story is different, but these stories share common threads: the adjustment to life with altered mobility and sensation, the importance of support, and the role of rehabilitation in regaining independence.
In this post, we'll explore personal stories from individuals living with Brown-Séquard Syndrome. These narratives will help bring to light what it's really like to live with this rare condition and how people cope with its demands.
Samantha was in her mid-thirties when she experienced a life-changing event—a car accident that resulted in a spinal cord injury and the diagnosis of Brown-Séquard Syndrome. The accident caused partial damage to her spinal cord, leaving her with motor weakness in her left leg and sensory deficits on the right side of her body.
“I remember waking up in the hospital, confused. I could move my right leg, but my left side felt weak, almost disconnected. It was the strangest thing,” she recalls.
For Samantha, the physical aspect of her injury was just one part of the challenge. After the initial trauma, she faced months of physical rehabilitation. Regaining strength and learning to walk again with support was a long and difficult journey.
“I had to learn how to manage the imbalance in my body. My left leg wasn't as strong, but my right leg was fine. And then on top of that, my right side didn't feel pain the way it used to. I couldn't tell if I burned myself or cut myself on the right side of my body—it was nerve-wracking.”
Samantha highlights how the emotional aspect of recovery is often overlooked in the medical field. Although physical therapy helped improve her mobility, adjusting to the new way her body felt and responded was mentally exhausting.
“At first, I was frustrated. Every day felt like a battle between the side of my body that wouldn't move and the side that couldn't feel. I had to come to terms with the fact that this was my new normal.”
Today, Samantha uses a cane when walking longer distances but has otherwise regained much of her mobility. Her story emphasizes the importance of persistence and support, both from her medical team and her family.
“I learned to focus on the victories, even if they were small. Getting up without help or walking a few steps unaided was a big win for me. My family helped me celebrate those wins and kept me motivated, even when I felt down.”
David's experience with Brown-Séquard Syndrome came not from trauma but from a spinal cord tumor discovered in his early forties. His tumor, which was compressing the spinal cord on one side, led to symptoms typical of BSS: motor weakness in his right leg and a loss of sensation in his left leg.
“My diagnosis came after months of unexplained numbness in my left leg,” David explains. “At first, I thought it was just a pinched nerve or something minor. But then I started having trouble walking, and my right leg would just give out at times. That's when I knew something was really wrong.”
David's tumor was benign, but it required surgery to remove it before it caused more damage. After the surgery, he was left with lingering symptoms of Brown-Séquard Syndrome, but he was grateful that the surgery had prevented more severe paralysis.
“The surgery saved my life and my mobility. But I still had to deal with what came after—the numbness on one side and weakness on the other. It was hard to explain to people. They'd see me limping and assume I had a leg injury, but it was so much more than that.”
David found support through online communities of people living with spinal cord injuries. He credits these groups with helping him adjust emotionally and mentally to life after his diagnosis.
“I found a lot of comfort in talking to others who had gone through similar things. It made me feel less alone in dealing with the condition. Everyone's story was different, but we all shared that same sense of having to rebuild our lives.”
Today, David manages his symptoms with physical therapy and strength training exercises. He still experiences numbness in his left leg, but his right leg has regained much of its strength. He now advocates for others with spinal cord injuries, sharing his story to encourage them to keep pushing through their challenges.
Unlike Samantha and David, who developed Brown-Séquard Syndrome suddenly due to traumatic injury and surgery, Maria's experience with BSS developed gradually. Her symptoms appeared over several months and were eventually traced back to multiple sclerosis (MS), a chronic condition that can cause lesions on the spinal cord.
“At first, it was just occasional numbness in my left hand and foot. I didn't think much of it until it started happening more often and lasting longer,” Maria says. “Then one day, I realized I couldn't feel the cold tile under my feet with my right foot. That's when I knew something was wrong.”
Maria's multiple sclerosis had caused a lesion on one side of her spinal cord, resulting in Brown-Séquard Syndrome. Her doctors explained that her condition was unusual because most people with MS don't develop such specific, localized spinal cord damage.
“Learning I had Brown-Séquard Syndrome on top of MS was overwhelming. It felt like I was dealing with two completely different diseases at once,” Maria explains.
For Maria, the sensory loss on one side of her body and weakness on the other has been difficult to manage, particularly as her symptoms fluctuate. Some days, she can move around with little trouble, while other days, her right leg feels too weak to support her weight.
“The unpredictability is the hardest part. I can wake up one day feeling fine, and the next day, my leg just doesn't want to cooperate. I've had to adapt and learn how to listen to my body.”
Despite the challenges, Maria has found ways to maintain her independence and stay active. She practices yoga, which helps improve her balance and strength, and she participates in regular physical therapy sessions. Emotional support from her partner and her MS support group has also been vital in helping her cope with the ups and downs of living with a dual diagnosis.
“The support I've received has made all the difference. My partner has been incredibly patient and understanding, and my MS support group reminds me that I'm not alone. We all have good days and bad days, but we push through.”
The personal experiences of individuals like Samantha, David, and Maria offer insight into what it means to live with Brown-Séquard Syndrome. While each story is unique, there are several common themes that stand out:
These personal stories highlight the resilience of those living with Brown-Séquard Syndrome. While the condition presents real challenges, the experiences of individuals like Samantha, David, and Maria show that it's possible to overcome obstacles and continue leading fulfilling lives despite the diagnosis.