Question: I have CMT and had foot reconstruction surgery last month. While in the cast and recovering I have been even more aware than ever of the muscle deficit in my other leg. That leg has had several knee surgeries through the past 20 years. Each time I had knee surgery, my quadriceps muscles have “shut down” and have needed electrical stimulation therapy to reactivate and strengthen. However, I have never been able to get them up to a normal strength again. My leg circumference is noticeably smaller and it makes things like stairs and rising from a chair challenging when I can’t use my other leg. My doctors and physical therapists have always pushed me to strengthen these muscles and build them up, but it just doesn’t seem to work. My question is–could this be part of my CMT? It’s upper leg, so I didn’t know if that “counted.” But I’ve worked so hard to strengthen and I just never get there.
CMTA Advisory Board member, Dr. Glenn Pfeffer, expert orthopedic surgeon at Cedars-Sinai writes:
Unfortunately, the quadriceps muscle can be affected by CMT. It sounds like you have worked hard at PT, but I would make sure to continue a daily home strengthening program. Make sure to stretch the knee straight each day, to make sure you don’t get a flexion contracture.
Getting up from a chair can be a challenge, and there are special pillows you can sit on that can help you spring up. A higher chair can also make it easier. Your physical therapist will know about these issues.
Different types of walking shoes with slightly different heel heights (a quarter of an inch one way or the other) can make all of the difference when walking. There is no specific brand I recommend. Try several, once you recover from your foot surgery.
Glenn Pfeffer, MD, is Director of the Foot and Ankle Center at Cedars-Sinai Medical Center. He is also a Co-Director of the Hereditary Neuropathy Program and Co-Director of the Cedars-Sinai/USC Glorya Kaufman Dance Medicine Center. Dr.Pfeffer is an orthopedic surgeon specializing in CMT. Follow him on Instagram: charcotmarietoothsurgery
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I had thigh pain and weakness and it was much better after getting AFOs that had the support in the front instead of the back of my lower leg.
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I competed in national springboard and platform diving events, late teens and twenties. In my thirties, I ran 6 marathons, including Boston, and was good at it. Legs—upper and lower—and feet very healthy. In my late forties I began having symptoms of numbness in feet. Dx with peripheral neuropathy. Ran half-marathon at age 54, much slower pace than best pace in all marathons. One month later, dx with CMT 2. Switched to cycling. Got AFOs for climbing hills with very good upper leg, quad strength. Over last 10 years quad strength has declined significantly. Legs have lost substantial muscle and hill climbing is much more challenging. But…without cycling and hill climbing, my legs I know would be way worse. I have no doubt loss of nerve function and muscle mass and strength in upper legs is directly related to the ravages of CMT. I continue to ride 3 times per week and do ski squats twice a week which stimulate the nerve and muscle remaining. After hard bike ride, I no longer feel the “good soreness” I used to after a good ride. So training effect from exercise is decreased. But it’s still good, even wonderful, that I can go out and ride 25, just like running for a couple of hours. So, Just Keep Doing It! It helps with what’s still there.
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Thank you for offering this information. I have been asking this same question.
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Excellent commentary – thank you all
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