Charcot Marie Tooth Disease

[livingwith]

My son is 15 years old, 7 feet tall, and an aspiring basketball player was just diagnosed with CMT He is in fairly advanced stages I’m told and orthotics really haven’t helped much. We are discussing major reconstructive foot surgery. We are unsure if he will be able to play basketball after surgery. He will lose his entire Junior season. I’m searching for direction and a physician who specializes in CMT in athletes. If anyone has any ideas, please let me know. Thanks!
...Read the full article

[phantomsec1570]

Melanie - What part of the country do you live in? I have a 15 year old, 6' tall who used to play basketball, but cannot any longer. Once they moved from 1/2 court as a little guy to the full court he had to stop because he didn't have the stamina anymore. He's had reconstructive surgergy on both legs / feet in the past year. Recuperation is long and hard. The leg operated on last January is just now getting back to normal...The surgeon we have in Orlando is phenomenal - it would be just my opinion, but if you say he is fairly advanced in his CMT you have to let his body tell him how much he can do. (As a mom it's the hardest part of this disease)

I would find out if your school system has a hospital homebound program of some kind so that his education continues along...My son has missed the better part of the past 2 years... Please keep us posted.

Julie

[jdenley]

just saw this. my daughter played all through varsity basketball running on her toes, unable to do lunges, but we didn't realize she had a significant problem. After her first 1 1/2 years of college, it got much worse. She had foot reconstruction with achille tendon lengthening 12/18/2008 and just walked with a tennis shoe on 2 days ago but only for a few steps. You have to weigh the benefits with the risks, and ask what is the worse thing that can happen if he plays as long as he can before he has surgery. My daughter was at the point she was begging for surgery. It is such a hard recovery I think it is really important that they be ready for it. I also think the same weakness and tightness she had going into surgery has made recovery difficult. By the way, the neurologist dx her with CMT. The genetic blood work was negative. The nerve biopsy was ambiguous and said "may or may not be CMT". The orthopedic was satisfied with that that is is CMT but I had 3 additional neuropathologist read the slides and they all said there was no evidence of CMT. So, although her foot looks like CMT, i don't know what she really has. hope this helps a little,j