CMT Simplified
Welcome to CMT Simplified, brought to you by the Hereditary Neuropathy Foundation. This podcast delivers bite-sized updates on the latest research and advancements in Charcot-Marie-Tooth disease (CMT). In episodes under 20 minutes, we cut through the jargon to bring you clear, concise insights into breakthroughs, treatments, and scientific discoveries shaping the future of CMT.
Perfect for busy listeners, *CMT Simplified* is your on-the-go resource for understanding complex information in a straightforward and approachable way. Stay informed, empowered, and up-to-date—one short episode at a time!
CMT Simplified
Inside CMT Foot Surgery: Risks, Recovery, and Results
Have you ever wondered what's actually involved in correcting CMT-related foot deformities? This episode cuts through medical jargon to deliver a comprehensive guide to foot surgery for people with Charcot-Marie-Tooth disease, combining expert clinical knowledge with invaluable first-person experience.
The classic high-arched, inward-turning foot seen in CMT isn't just a cosmetic issue—it creates real functional problems that impact daily living. Walking on the outside edge of your foot causes pain, balance problems, and can trigger issues up the entire kinetic chain, affecting knees, hips, and back. Understanding this mechanical issue helps explain why surgical intervention might be worth considering.
We break down exactly what happens during surgery: the bone realignment that creates a stable foundation, the intricate tendon transfers that rebalance muscle forces, and what makes someone a good candidate. You'll learn why finding a surgeon with deep CMT experience is crucial, with Dr. Glenn Pfeffer's insights providing the clinical framework. Most powerfully, we share a detailed patient journey from Liz, who documented everything from pre-surgery preparation to the five-month recovery process, including incredibly practical tips about travel arrangements, accommodation considerations, and managing daily life during recovery.
What makes this episode uniquely valuable is how it bridges the gap between clinical explanations and lived reality. Yes, recovery is challenging—requiring total non-weight bearing for weeks and a dedicated support person—but understanding the potential for 20 years of improved function helps put that temporary challenge in perspective. Don't automatically assume your limitations are permanent. Listen now to determine if surgical correction might improve your quality of life, and share this episode with anyone navigating this complex decision.
For Liz's full Surgery Guide & PDF, click here!
Thanks for listening! Learn more at hnf-cure.org and subscribe for more updates on CMT research and advancements.
Welcome to CMT Simplified, brought to you by the Hereditary Neuropathy Foundation. This podcast delivers bite-sized updates on the latest research and advancements in Charcot-Marie-Tooth disease, CMT. With episodes ranging from 10 to 20 minutes, we cut through the jargon to bring you clear, concise insights into breakthroughs, treatments and scientific discoveries shaping the future of CMT. Perfect for busy listeners. Cmt Simplified is your on-the-go resource for understanding complex information in a straightforward and approachable way. Stay informed, empowered and up-to-date. One short episode.
Speaker 2:Welcome to the Deep Dive.
Speaker 3:Great to be here.
Speaker 2:Today we're really digging into something important Foot surgery for people with Charcot-Marie-Tooth CMT.
Speaker 3:Yeah, it's a huge topic, a really big decision for many patients.
Speaker 2:Definitely Lots of questions come up like is it even right for me? What's it actually involve? What's the recovery really like?
Speaker 3:It's a complex area, finding that balance between the condition itself and what surgery might offer.
Speaker 2:Exactly and to help us understand it better. We're looking at two fantastic sources today. First, we've got these incredibly detailed notes a personal journey, really from a CMT patient named Liz. She went through it and shared so much practical advice.
Speaker 3:That kind of firsthand account is invaluable.
Speaker 2:Totally. And second, we're drawing from a discussion with Dr Glenn Pfeffer. He's an orthopedic surgeon who well, he really specializes in CMT feet.
Speaker 3:So you get the clinical expertise side by side with that real world patient experience. It's a powerful combination.
Speaker 2:That's the idea. Our mission here is to pull out the key insights, the important stuff, from these sources to help you get a clearer picture.
Speaker 3:Makes sense.
Speaker 2:The first, a really, really crucial point we have to make and it comes straight from the sources. Liz's notes. That's her personal story, her experience and the expert info is general clinical perspective. So this deep talk, it's informational, based on these sources. It is absolutely not medical advice.
Speaker 3:Cannot stress that enough. Always talk to your own doctors, your own medical team.
Speaker 2:Always Okay. So disclaimer covered. Here's what we're going to unpack today. We'll start with why these foot shapes happen in CMT.
Speaker 3:The mechanics of it.
Speaker 2:Yeah, then surgery versus maybe bracing Is each one the better path? Who's a good candidate?
Speaker 3:And what does the surgery actually look like?
Speaker 2:And we'll spend a good chunk of time on the recovery. This is where Liz's notes really shine all the practical stuff.
Speaker 3:It's a day-to-day reality.
Speaker 2:Exactly. And finally we'll touch on some common questions things about long-term outcomes, risks, that kind of thing.
Speaker 3:Sounds like a thorough plan.
Speaker 2:Okay, let's unpack this.
Speaker 3:So what's fascinating here is understanding the foot itself. In CMT, the classic picture, the most common thing we see is that high arch, sometimes pretty severe.
Speaker 2:Right the high arch.
Speaker 3:And often the foot is also kind of twisted inward. The technical term is a cavovarus foot. Cavo for the high arch varus for the inward turn.
Speaker 2:Cavovarus, okay, and you said before that shape comes down to muscles.
Speaker 3:Fundamentally? Yes, it's all about muscle imbalance. Cmt affects the nerves right, so some muscles get weaker but others might stay strong.
Speaker 2:Like an uneven pulling match on the bones.
Speaker 3:That's a great way to put it. Imagine different teams pulling ropes attached to the foot bones. If one team gets weak, the other team pulls the foot out of alignment. Like that arm wrestle analogy, the stronger side wins.
Speaker 2:And how does that usually play out? Does it start suddenly?
Speaker 3:It's usually gradual, often starts with the tiny muscles inside the foot, the intrinsic muscles they weaken first.
Speaker 2:Okay.
Speaker 3:That weakness makes the toes start to curl up. Or claw Clawed toes yeah, I've heard of that. Okay, that weakness makes the toes start to curl up.
Speaker 2:Or claw Clawed toes. Yeah, I've heard of that, Okay.
Speaker 3:And as those toes claw, they pull on ligaments and tissues that actually pull the arch higher At the same time, the muscles on the inside of your ankle. They tend to stay stronger in many CMT types and they pull the whole foot inward.
Speaker 2:So it's a combination effect building over time.
Speaker 3:Exactly, and if it's not addressed eventually, the bones themselves can start to remodel, to change shape, because of those constant unbalanced forces.
Speaker 2:Which just sounds well painful and really unstable.
Speaker 3:Oh, definitely. The consequences are huge. People end up walking mostly on the outside edge of their foot. Ouch yeah, think about walking a mile like that on concrete. It causes pain, obviously, but also terrible balance Calluses where they shouldn't be, sores, big risk of ankle sprains, even stress fractures.
Speaker 2:It must make you feel really unsteady.
Speaker 3:Very unsafe. It can really limit what people feel comfortable doing.
Speaker 2:So, given that, how does someone or their doctor decide whether to manage this with something like braces or to think about surgery?
Speaker 3:Well, a really strong point from the expert discussion was this Patients with CMT shouldn't just, you know, accept impairment as the final word, if there's actually a way to make things better.
Speaker 2:Don't settle for limitations if you don't have to.
Speaker 3:Precisely. The goals of surgery are really twofold Rebalance those muscle forces we talked about and correct the bone alignment so the foot sits flat on the ground.
Speaker 2:Get it flat Plantigrade, you called it.
Speaker 3:Plantigrade exactly and ideally. For many, the hope is also to reduce the need for braces or maybe even get out of them completely if there's enough muscle function left.
Speaker 2:But it's not for everyone, right? You mentioned that before.
Speaker 3:Absolutely not, and this is so important. If someone has a complete paralysis below the knee, like no muscle activity at all, and their foot is already flat on the ground, then surgery is usually not the right answer. In fact, it could be harmful.
Speaker 2:Why is that?
Speaker 3:Because in that situation a modern brace, an AFO, is often the best support. It uses the existing foot structure. Surgery might actually remove some of that structure. The brace needs to work properly. It takes away the spring action the brace provides.
Speaker 2:Okay, so that's a clear no for surgery in that specific case. Who is the ideal candidate then?
Speaker 3:The best candidate is someone who has that crooked foot, the high arch, the inward turn, the cavivaris deformity and they still have some working muscle below the knee.
Speaker 2:So deformity plus some muscle function.
Speaker 3:That's the key combination. The surgery aims to fix the bad mechanics caused by the imbalance. If you have some muscle left, the surgeon can work with that, maybe move tendons around to help balance things out.
Speaker 2:Finding a surgeon who really gets CMT feet sounds critical, though Seems like it wouldn't be common.
Speaker 3:It's hugely important. Dr Pfeffer in the discussion mentioned how crucial that experience is. He sees, you know, many new CMT patients every week does a lot of these specific surgeries each year. That volume builds a deep understanding that maybe someone who only does one or two a year might not have.
Speaker 2:Right the nuances. So how do they figure out if you have that some muscle function, especially if you're not local?
Speaker 3:Well, besides the in-person exam, the expert mentioned using patient videos sometimes.
Speaker 2:Videos Interesting.
Speaker 3:Yeah, having the patients in videos of them walking or sitting and trying to actively, you know lift their foot up or turn it out, it helps assess what muscles are still firing.
Speaker 2:Okay, turn it out. It helps assess what muscles are still firing. Okay, what about timing? Is there a best age or should you wait?
Speaker 3:The expert really emphasized intervening earlier rather than later if surgery is needed. Why is that? Because the longer that imbalance goes on, the stiffer the foot gets, the more the bones deform. It just gets harder and harder to correct effectively. The advice was basically consider it when you reach a point where you feel you just can't live with the foot the way it is anymore.
Speaker 2:So less about a specific age, more about function and progression.
Speaker 3:Exactly. Age isn't the main factor. He mentioned operating on people in their 70s. It really depends more on your overall health, what you want to achieve and if you can handle the recovery. What you want to achieve and if you can handle the recovery. But you know, for a 23-year-old whose foot is getting progressively worse, waiting probably isn't the best strategy. Better to fix it before it causes even more problems.
Speaker 2:And if we connect this to the bigger picture, like you said, it's not just the foot, is it?
Speaker 3:No way that crooked foot throws everything off alignment, knees, hips, even your back can start hurting because you're compensating all the time. Fixing the foot's mechanics can actually help relieve pain way up the chain.
Speaker 2:Makes total sense.
Speaker 3:Yeah.
Speaker 2:Okay, let's talk about the surgery itself what actually happens.
Speaker 3:So it's usually an outpatient thing. You go home the same day. They numb the leg, usually with a nerve block, which the expert specifically noted is considered safe for CMT patients. They use a microscope for the detailed work.
Speaker 2:Microscope. Wow, and what are they actually doing in there?
Speaker 3:Well, there are almost always two main parts to the operation working on the bone and working on the soft tissue's tendons, mostly.
Speaker 2:Bone and soft tissue.
Speaker 3:Right. The bone work involves making precise cuts in the bones and then shifting them, maybe taking out a wedge of bone to straighten things, or moving the heel bone over to a better position.
Speaker 2:Why cut the bone? Is it always needed?
Speaker 3:The expert said pretty much always like 100% of the time in his experience because, especially if CMT started early, the bones themselves have often grown into that deformed shape. They're not straight anymore.
Speaker 2:And is that the hardest part? The bone stuff.
Speaker 3:Actually no, he mentioned the bone work. While it sounds, major is often the more straightforward part. Bone heals quite predictably.
Speaker 2:Okay.
Speaker 3:The bigger challenge, the more complex part is usually the soft tissue balancing the tendon transfers.
Speaker 2:Tendon transfers. What's that involve?
Speaker 3:It means taking a tendon, that rope that connects a muscle to a bone, detaching it from its usual spot and reattaching it somewhere else on the foot.
Speaker 2:To change how it pulls.
Speaker 3:Exactly To redirect the muscles force, trying to create a balance where you didn't have one before. Finding the best tendon transfers for different patterns of weakness is still an area of active research.
Speaker 2:It sounds incredibly intricate, like rebuilding the foot's mechanics.
Speaker 3:It really is and the expert was very upfront, you know, acknowledging it's a big deal, it's scary, it's big when it's on you, I think was the phrase used.
Speaker 2:Yeah.
Speaker 3:But he also balanced that by talking about the risk of not doing it, living with severe pain, instability, limitations.
Speaker 2:Right, which is the perfect lead in to Liz's notes, because we've heard the what from the surgeon, but her notes give us the what it's actually like from someone who's been there.
Speaker 3:That patient perspective is just crucial for setting expectations, isn't it?
Speaker 2:Oh, completely. The level of practical detail is amazing. Yeah, so walking through her experience pre-op appointment was the day before the surgery.
Speaker 3:Right, so you got to plan for that extra day.
Speaker 2:Yeah, it means flying out early if you're traveling Surgery day itself. She went home same day feeling groggy, obviously had a big splinter cast on. They gave her crutches. But she really recommended having a wheelchair or a knee scooter ready at home Much easier for getting around initially. And pillows, lots of pillows for the car ride home to keep that foot elevated. Elevation seems super important, always is after foot surgery and those first couple of weeks sound like the toughest part, absolutely Total non-weight bearing. And Liz was adamant you need a support person, non-negotiable for those first two weeks, for everything. I imagine Literally everything Getting to the bathroom, managing the pain, meds, food, just company, physical support, emotional support. She said she mostly slept, watched TV, suggested having crafts or books ready. Your phones are good.
Speaker 3:And the hygiene challenge.
Speaker 2:Huge. No showers for two weeks was the rule for her. So it was all about wet wipes, dry shampoo, careful washcloth baths. She said the pain was manageable with the med schedule. Use a reminder app. The nerve block helped the outside of her leg but she still had pain inside arch ankle, later needed gabapentin for twitching. Worst pain was maybe a 6 or 7 out of 10.
Speaker 3:Okay, so uncomfortable definitely, but sounds like it was controllable.
Speaker 2:Yeah, then the first follow-up, usually around two weeks and a day later. That's when the initial splint comes off they do x-rays put on a hard cast and off they do x-rays put on a hard cast and maybe fly home. Then, yes, yeah, she said if all looks good you can fly home that same day. But big, but allow tons of time for that appointment. Hers took over two hours.
Speaker 3:Good to know. Then the next steps starting to move again.
Speaker 2:Right. So a few weeks after that maybe four to six weeks total after surgery you'd see a local doctor. They take off that hard cast. You might get another hard cast, but this is when you typically start putting some weight on it with crutches or a walker, of course.
Speaker 3:Slowly getting back on your feet Must feel weak.
Speaker 2:Very sore and weak. She said Then after that cast, usually about two weeks in a walking cast, then another two weeks or so in a walking boot.
Speaker 3:Ah, the walking boot, the magic moment. The magic moment, yeah.
Speaker 2:Because, yes, you can finally take it off to have a real shower. Yeah, huge milestone After the boot, maybe another couple of weeks transitioning into a regular supportive shoe.
Speaker 3:And physical therapy starts around, then Usually yeah.
Speaker 2:Finding a PT who knows CMT is ideal but can be tricky. The focus needs to be on neuropathy management, balance work, strengthening the whole leg, the core. Liz also had a good tip Check your insurance coverage really carefully for PT, especially co-pays. Hospital-based PT can sometimes cost more.
Speaker 3:That's a practical point people might not think of. So, overall, how long until she felt, you know, somewhat normal again?
Speaker 2:Her timeline was about five months to feel almost back to normal, which is significant. She did mention a little lingering discomfort, maybe like a one or two out of 10. Pain might hang around for a bit longer, but she'd heard from others it often resolves completely within a year.
Speaker 3:Five months recovery for potentially you know 20 years of better function. That's the trade-off you weigh.
Speaker 2:Exactly and beyond the timeline. Her practical tips are just gold. Like travel, fly in the day before pre-op, consider extra legroom or an upgrade for the flight home. Definitely use wheelchair assistance at the airport.
Speaker 3:Little things that make a big difference when you're recovering.
Speaker 2:For sure Accommodation. She actually switched from an Airbnb to a hotel. Found the Airbnb had steps. Wasn't great for the wheelchair hotel advantages food on site, room service, maybe space for her support person, often handicap rooms available with grab bars near elevators. You can ask for extra pillows. She suggested a grocery run before surgery for snacks and basics and check if the hotel charges for package deliveries if you order things online.
Speaker 3:Good thinking what if someone does choose an Airbnb?
Speaker 2:Gotta be super careful. She advised Check for steps, measure doorways. If you need a wheelchair, think about bathroom accessibility. A washer dryer is a huge plus, though, and extended stay places with kitchenettes can be good.
Speaker 3:What about getting around town while you're there?
Speaker 2:She said they only bothered with a rental car for the first couple of days for errands before surgery. After that it was easier and cheaper just to use Uber, especially considering parking costs at hotels or hospitals.
Speaker 3:Makes sense. Packing tips. What does she find essential?
Speaker 2:Loose clothing is key. The splint cast is bulky. Things to do books, coloring games, body wipes, dry shampoo. Things to do books, coloring games, body wipes, dry shampoo absolutely essential for the no shower phase. Maybe bring your own mug bowl spoon for simple meals or reheating. Optional extras she found helpful extension cords, scissors, maybe an HDMI cable or Roku stick for the TV, a lap desk.
Speaker 3:And things to buy locally or have ready at home.
Speaker 2:Yeah, locally Snacks, paper towels, more wipes, tylenol, baby aspirin. Check with your doctor first on that. And definitely constipation relief meds Painkillers often cause that. Good reminder For home shower stool waterproof cast cover for when you can shower, maybe vitamin D supplements, ability aids besides the crutches. She strongly recommended getting a wheelchair or an e-scooter ahead of time. Have it delivered. She tried an iWalk, one of those peg leg things. Didn't work for her balance.
Speaker 3:Okay, any other final bits of practical wisdom from her?
Speaker 2:Yeah, a few really important ones. No shaving legs or getting pedicures right before surgery. Tiny cuts can be infection risks. Ah, good point. Double triple check with the surgeon's office about what specific pre-op forms your local doctor needs to fill out. Get those forms early. Lynn's had to reschedule her PCP visit because she didn't have the right paperwork from the surgeon's office initially. Also, insurance travel stipends they might exist but apparently require very specific letters from doctors. That can be hard to get. And follow those pre-surgery rules to the letter. No aspirin or Biprofen for 10 days before.
Speaker 3:No food drink after midnight the night before. Wow, that level of detail is just incredibly helpful for anyone even thinking about this.
Speaker 2:Isn't it? It bridges that gap between the clinical plan and the messy reality of recovery. Her notes also track the cast progression the first splint cast with the nerve block pump inside, then the hard cast, then the weight-bearing cast.
Speaker 3:Understanding those stages is useful too.
Speaker 2:Definitely. Okay. Let's switch gears slightly and look at some of the common questions that came up in the expert discussion. A huge one Will this surgery last forever?
Speaker 3:Right and the honest answer from the expert was probably not forever, because CMT is progressive. The nerves continue to change over time.
Speaker 2:So what's the goal then?
Speaker 3:The goal is usually aiming for a good solid 20 years or so of significantly improved function from that. Specific surgery Doesn't mean nothing else will ever be needed, maybe further work on toes or other parts of the foot down the line. But the major reconstruction aims for long-term benefit.
Speaker 2:Okay, 20 years is still a long time. What about relearning to walk? How long does that really take?
Speaker 3:It's a process the expert broke it down About 10 weeks for the actual tissues bones, tendons to heal strongly. Then you're looking at maybe two to three months of focused physical therapy.
Speaker 2:That's not the whole story.
Speaker 3:No, he emphasized that the brain takes longer. It takes about a full year for your brain to fully adapt, to rewire itself and learn how to use that newly positioned foot effectively and automatically.
Speaker 2:A whole year for the brain to catch up. Wow.
Speaker 3:Yeah, and he also made a point of saying it's completely normal to be absolutely terrified beforehand. It's a big undertaking.
Speaker 2:We keep coming back to the surgeon's experience. Is it really that vital? They know CMT inside and out.
Speaker 3:The experts stressed it was crucial, absolutely crucial.
Speaker 2:And how does fixing the foot help the rest of the body? We touched on this.
Speaker 3:Yeah, it alleviates those unnatural stresses. Walking on a properly aligned foot reduces strain on the knees, hips, back. It can make a big difference to overall comfort and mobility, not just in the foot itself.
Speaker 2:Does the surgeon always?
Speaker 3:According to Dr Pfeffer yes, pretty much 100% of the time in his CMT reconstructions. The bone is usually part of the problem, part of the deformity, but he also reiterated bone heals. Well, it provides the stable foundation needed for the tendon work.
Speaker 2:What about hammer toes? Do they always get fused straight?
Speaker 3:Interesting point here. This expert actually prefers not to fuse them rigidly.
Speaker 2:What does he do instead?
Speaker 3:He typically takes out a small piece of bone from the joint and then holds the toe straight with temporary pins for about a month while it heals. The idea is to leave some flexibility, some ability for the toe to bend slightly and feel the ground, rather than being totally stiff like a fused toe he mentioned. This non-fusion approach is fairly common among surgeons specializing in CMT.
Speaker 2:That's interesting. What if a fusion is done, say an ankle fusion, and it doesn't heal right? Can that be fixed?
Speaker 3:Yes, definitely. If a fusion doesn't heal what's called a non-union and it's causing pain, it can usually be redone. The expert mentioned success rates for fusions are generally very high, like 97%, but revisions are possible using bone grafts or other techniques if needed.
Speaker 2:And maybe the most important clarification does the surgery actually fix the nerve damage or make weak muscles strong again?
Speaker 3:No, that's a critical point. Surgery does not reverse the nerve damage or restore lost muscle power due to CMT.
Speaker 2:So what does it do?
Speaker 3:It fixes the mechanical problem. It corrects the shape of the foot that resulted from the muscle imbalance. If you have zero muscle function and a flat foot, surgery isn't the answer. Use a brace. But if your foot is crooked because of that imbalance, even if the muscles causing it are very weak now, surgery can make the foot flat and stable again. It creates a functional platform. You can walk on properly, whether that's with or without a brace. Afterwards it fixes the structure, not the wiring. And just as a resource note, the expert, Dr Pfeffer, mentioned his Instagram account. It's at Charcot-Marie-Tooth-Surgery. He said a lot of this info is covered there too.
Speaker 2:Great resource, okay, so what does this all mean?
Speaker 3:Well, we've covered a lot of ground. We.
Speaker 2:Resource. Okay, so what does this all mean? Well, we've covered a lot of ground. We really have.
Speaker 3:We've tried to take this deep dive into CMT foot surgery, bringing together Liz's incredibly helpful patient journey and Dr Pfeffer's expert clinical view, and it's clear, isn't it, that deciding on surgery is a really big personal choice. Lots to weigh up, and the recovery is well. It's a marathon, not a sprint.
Speaker 2:For sure, but hopefully understanding the why behind the surgery, who might be a candidate, what it involves and getting that detailed picture of recovery from someone like Liz. Hopefully that helps you navigate the questions if this is something you're considering. And one last time this is information from our sources. It's not medical advice. Talk to your team.
Speaker 3:Absolutely, and for more general info on CMT, the source is pointed towards the Hereditary Neuropathy Foundation's website hnf-cureorg.
Speaker 2:Right, and if you want to revisit the kind of practical recovery details Liz shared, check our show notes. We'll link to a guide based on her personal notes and his Instagram again.
Speaker 3:At Charcot-Marie Tooth Surgery Okay.
Speaker 2:So a final thought to leave you with.
Speaker 3:I think it comes back to that idea of not just accepting limitations. Really reflect Are you living with significant impairment from your foot deformity that maybe could be improved If your foot fits the criteria we discussed, if correction is possible, weigh the potential benefits the improved quality of life, the better function against the undeniable challenges of the surgery and recovery. Don't automatically assume the way things are is the only way they can be. Explore the possibility.
Speaker 2:A really powerful perspective to end on. Thank you so much for joining us for this deep dive.
Speaker 1:Thank you for listening to CMT Simplified. To learn more about HNF, visit hnf-cureorg. Join CMT families around the world, creating impact that matters.