CMT is known for affecting feet, but the hands are often involved too. Grip weakens, fine motor control declines, and tasks like buttoning a shirt, writing, or holding a fishing rod become harder.
For some people with CMT, hand surgery can help restore function and return people back to doing what they love. Norm Krupp is one of them.
Growing up with CMT
Krupp grew up in St. Louis, an active kid who lived for sports and the outdoors. At age 7, he was diagnosed with type 1 diabetes.
In his teens, his feet started to drop. Doctors thought it was peripheral neuropathy from diabetes. Years later, he learned the real reason for his foot changes: Charcot-Marie-Tooth disease.
Krupp stopped playing baseball and basketball in junior high but kept at hockey and golf through high school and college. As time passed, running got harder. His coordination slipped. The CMT seemed to be progressing.
When CMT affects your hands
After college, Krupp took his Forest Management degree to the Pacific Northwest and built a career in the timber industry. The work was physical. As his CMT progressed, his hands started failing him on the job and at home.
In his early twenties, Krupp had tendon transfer surgery on his right hand. It worked. When his left hand started going the same way, he decided to “live with it” rather than go back into surgery.
Krupp’s left hand kept getting worse. He was losing a favorite pastime – fishing – because it was difficult to hold a rod for any length of time.
In 2023, Krupp underwent a series of procedures including tendon transfers and a carpal tunnel release at Barnes-Jewish Hospital in St. Louis.
Recovery was not easy. Krupp leaned on his family, his medical team, and his friends in the CMT community to get him through though the healing.
Considering Hand Surgery for CMT
Hand surgery can help with difficulty extending fingers or thumb, weak grip or pinch, nerve compression like carpal tunnel, and imbalances between stronger and weaker muscles.
Not everyone with CMT is a candidate for hand surgery. The decision can depend on which muscles are weak and which are strong, how stable the joints are, and the severity of CMT symptoms.
An orthopedic surgeon may recommend surgery if hand weakness or deformity is progressing, bracing or therapy alone isn’t enough, or if specific tasks like writing or buttoning clothes are becoming difficult.
Common surgical procedures for hands with CMT include:
- Tendon transfers, which replaces weaker muscles with a stronger ones
- Nerve decompression, like carpal tunnel release
- Procedures that improve joint alignment
A Final Note
CMT hand surgery is not a one-size-fits-all. Talk to your neurologist or OT about your options. Working with a knowledgeable care team and clearly communicating your goals can help determine if hand surgery is right for you.
Krupp’s hand isn’t perfect. He’ll tell you that. But he can hold a rod. He can work tackle. For him, that’s enough.
Find a CMTA Center of Excellence or CMT clinician near you.
