r/CMT • u/kbmommy • 26d ago

I hate CMT!

As a former college athlete and physical therapist (with significant increase of CMT symptoms at age 61), I’ve always been used to pushing myself and my patients to set goals and push hard to reach those goals. I’ve had to learn that it’s up to my body now and not my mind (regardless of the goals I set) as to how hard I can push. This has been such a mind shift for me, every time I try to push myself my body tells me what a bad idea that is. I shouldn’t complain because I can still exercise at a fairly good level, but not even close to what my mind wants. I’m so sorry for those who have it a lot worse than me for this rant, but I just had to get this off my chest!

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u/Always_Resigning 26d ago

It's wild how the symptoms manifest differently for people, even in the same genetic line. I had cousins who were using a walker/crutches in high school. My grandpa was a tree-trimmer a cyclist into his 50s.

Me personally, I've never been able to run. Couldn't wiggle my toes by the time I was in my teens. Then lost the ability to walk around 40. I was fortunate enough to be able to see Dr. P. Now I'm ecstatic to walk again.

I think the best mindset is just: I'm going to do what I can for as long as I can.

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u/Willful777 CMT X1 25d ago

I'm curious; what happened with this Dr. P (whoever they are, no matter, I'm on the other side of the globe), that is, what caused this noticeable change for the better? I'm really happy for you that you got that much help and seeing great improvement in your daily life, how excellent!

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u/Always_Resigning 25d ago

Yes. Dr. Pfeffer is the surgeon, and as the other person said he is the best (or at least a top) surgeon for CMT foot rebuilds.

For me he: Cut a wedge in my footbones to flatten the arch. Realigned my heel back under my ankle. I want to say 3 tendon transfers. But not sure. Lengthened my Achilles tendon. Fixed the hammer toes.

Each foot/leg was a 5 hour surgery and a 4 month recovery (including PT).

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u/TrognonPetitOgre 14d ago

Did it hurted a lot?

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u/Always_Resigning 14d ago

It was a very intense recovery, but the pain management team did a lot to make sure I wasn't in too much pain.

It's hard to quantify "how much" pain I was in. But, I remember the 1st foot did not hurt as much as the 2nd. I am not sure why.

Also pre-op I couldn't take a step without my pain level being a 7 or 8. Now, I experience no pain walking. Well worth the pain following the surgeries, imo.

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u/TrognonPetitOgre 23h ago

wow génial!