Dr. Glenn Pfeffer Answers All Your Questions About CMT foot surgery

dR pFEFFER WITH BONSAI
Dr. Glenn Pfeffer: Orthopedic Surgeon at Cedars-Sinai

The CMTA hosted a very informative talk on Zoom in September, 2020 to the CMT community featuring well-known orthopedic surgeon, Dr. Glenn Pfeffer. I’ve transcribed this talk for you! Enjoy!

Elizabeth Ouellette: Welcome Dr. Glenn Pfeffer.  Dr. Pfeffer is the Director of the Foot and Ankle Surgical Program at Cedars-Sinai in Los Angeles.

I can’t tell you how much I appreciate and admire Dr. Pfeffer. He spends all his time with people with CMT. He wants to better their lives. He wants to see people walk.  He has devoted so much time and energy to the CMT community. I am just so honored to have him here as a doctor, my son’s surgeon, as a friend and as a colleague. So welcome, Dr. Pfeffer, and thank you for coming on. 

Dr. Pfeffer: Well, thanks for having me, and I’m surprised so many people came on a Saturday! 

Elizabeth: First, I’d like to get to know Dr. Pfeffer a little bit more. And when I was doing some research on him, I saw that he did magic.  I’m like, what surgeon does magic? 

Dr. Pfeffer: Actually, magic is important to me. I did this through high school, college and medical school. I actually performed in nightclubs.  I spent the summer in Nantucket at the Rose and Crown as their magician.  And whatever it is that attracted me and still attracts me to magic, is the exact same feeling I get two weeks after surgery when a CMT patient is sitting in the office.  Your foot’s going to be a little bloody.  You’re going to have some sutures to take out, and we open up the cast, and you’ll see some pictures of this, and I hold their foot and I say, “Take a look here, your foot.”  And it’s a new foot. It’s a foot they haven’t seen, perhaps ever, and the look on their face is identical to the look on people’s faces when you do a magic trick for them.

So whatever that is that attracts me is why I continue with magic. Magic is very simple you know. You can do things like this where you can take something and have it disappear. You can make it a little more complicated, which I do in the office for kids.  You just take the same little piece of foam or whatever, and you just put it into this hand and you can just show people that it’s empty.  So that’s sleight of hand, which of course is great for the magician. I still do this at orthopedic parties.  But not to belabor it, if I were going to do this I wanted this to have the same absolutely startling response that people have with CMT when they see their new foot. 

Elizabeth: Your father was a surgeon?

Dr. Pfeffer: He was a general surgeon.

Elizabeth: Oh and so is that what inspired you to be a surgeon?

Dr. Pfeffer: Yes, absolutely –  I don’t think I’d ever have even gone into medicine if not from my dad’s influence.  You know like all of us, I’m a mix of my dad’s DNA and my mom’s and they were very different people.  But dad really inspired me with his surgery, and he was hard-working and I think it was my destiny.  I probably have very little free choice in life.  He didn’t make me but in terms of who I was, it was sort of my destiny, like the Jedi.

Elizabeth: You horseback ride or you did in the past.  You scuba dive, you dance, you create bonsai, and I read somewhere you made a correlation between bonsai trees and surgery.  Could you tell us a little bit more about that? 

Dr. Pfeffer: I’ve always been interested in bonsai which are, you know, plants; they’re trees, and you keep them miniature by trimming their leaves, by trimming their roots, and you keep them in small pots.  Everyone knows what they are, and what you do to shape them is you wire the branches and you hold them down so they look like a tree.  And I realized only a year ago that what I’m doing with bonsai is identical to what I’m doing with CMT feet. I was sitting there in surgery and we were wiring a foot down and putting screw into it, and somebody who knew about bonsai said, “You know, Glenn, that’s exactly what you’re doing with bonsai.”  And it was startling to me. You would think it would be obvious but it wasn’t.

As you may know I’ve got my own foot problem.

Elizabeth: I was just about to ask you; when you told me you had foot issues, I’m like, “He gets it.He knows what it is like to have a foot problem, and I think that’s a bonus for your patients.”

Dr. Pfeffer: Well I was just going to say, though, that’s how I got into horseback riding.  Because I’m athletic by nature, but I couldn’t run.  You know, I didn’t know what I had. It’s very poignant for me, the CMT world, because patient after patient, everyone who’s listening knows this, everyone, unless you had a mother or father who had CMT, you grew up not quite knowing what was wrong with you, right? And I didn’t either.  I didn’t know I had a problem with my foot for 40 years. It sounds dumb, right?  But if someone’s out there with CMT and no one told them they had CMT for 40 years, and they just thought they walked funny and they couldn’t keep up, and they were a little unbalanced, nobody would know. So I took up horseback riding because I could do what I wanted to do. I could fly through the air and jump, and I’m sure all the people listening have modified their lives in way so that they can function with their CMT.

Elizabeth: I think you can really relate to people with CMT and understand foot issues and the inability to do certain things. 

Dr. Pfeffer: Well there’s no question, you know I don’t like to talk about it too much because you don’t want to get a little corny on a Zoom chat with all these people, but yes, I 100 percent relate to what people are going through. I’m not in a wheelchair.  I don’t have problems breathing. My hands are strong.  But for the isolation that somebody feels, the difference that somebody feels growing up with CMT, that is exactly what I felt for sure, and I don’t know that you can teach somebody that.  I’m not sure you can really learn it, but it’s just in my soul.  I’m not as bad off as most of the people with CMT at all but that’s why I get it, you know, that’s why I think it’s probably why I was attracted to all this. 

Elizabeth: So why don’t we start your presentation, I think you are a fascinating person, and I know you’re an expert surgeon and the best of the best.  And you’re also a great presenter, so I’m sure people want to hear what you do every single day.

Dr. Pfeffer: I want to just show you my world of CMT, and I have a certain kind of person that comes to me, right?  Somebody who was unfortunately paralyzed in a wheelchair would not be getting to my office, so I do understand that I’m seeing a segment of the CMT population.  But this is my world and what I go through every single day. At this point I’m confident that we at Cedars are operating on more CMT patients than anywhere else in the United States and we have a plethora of experience with it. 

We’re lucky enough to have a large CMT program at Cedars with some of the most famous CMT neurologists on the face of the planet, such as Rich Lewis and Bob Baloh, and with amazing geneticists. If you have an issue, you can come to see the program. You’ll see a lot of people. Instagram is as alien to me as, you know, speaking Russian or French and yet it’s been a tremendous success for me and the people who follow it. I mean, my gosh, I didn’t even understand that at one point I had two people following it. Now we have close to 1400 people across the world, and I communicate with them all. It’s sad when someone from Ethiopia says “How can I come and have surgery?”, and of course the chance of them having surgery is almost zero for financial and travel reasons.

I encourage you to follow me on Instagram: #CharcotMarieToothSurgery

The foot has 20 muscles.

The foot’s complicated, right?  It’s got a lot of muscles in it.  There are 20 muscles in the foot, more than there is in the entire leg. 

The tibialis anterior lifts the foot.

The tibialis anterior muscle is the strongest dorsiflexor (muscle lifting foot up toward the shin) and helps to lift the foot from the ground. The Tibialis Anterior Muscle also facilitates flexion of the foot upwards and extension of the toes. The Tibialis Anterior Muscle originates from the outer surface of the tibia and inserts into the first metatarsal bone in the foot which is located behind the big toe. 

Extensor digitorum longus muscle - Wikipedia
Toe extensors

Above are the toe extensors. These are what lift up your toes, and interestingly with CMT, if the tibialis anterior that lifts your ankle gets weak, these toe extensors will start working harder, which is why so many of you will have a toe deformity. As the Tibialis Anterior muscle gradually weakens and the foot drops down, a contracture of the Achilles will occur because the tendon is no longer being stretched out during gait. The worse the contracture, the harder it is for the weakened Tibialis Anterior to lift (dorsiflex) the ankle. 

Achilles Tendinitis For Runners
The Achilles tendon tightens with CMT
Peroneus brevis - Wikipedia
Peroneus Brevis

Above is an image of the Peroneus Brevis, one of the key muscles that weakens in CMT.  Why it happens exactly is still unknown, but this muscle, when it weakens, destabilizes the ankle and the foot starts to turn in, because this muscle is weak.  And the other reason the foot starts to turn in so commonly is because this muscle in the right foot, looking from behind, stays strong.

So one weak muscle, and one strong muscle causes the foot to start to deform.

So let’s talk about that what causes the CMT deformity. I’m talking about this common cavovarus  (very high-arch) foot.  This is what happens every millisecond in our body. Muscles are pulling back and forth but keeping us balanced, right? With CMT, because of the paralysis that’s uneven, involving some muscles but no other muscles, they become weak.  There is CMT. Some muscles are powerfully strong, and others are weak and that causes a deformity.  It’s called a cavovarus, and you can really see it on this right foot. 

cavovarus foot

If you took your hand, put it in your pocket and left it there for a year. Not only will you not be able to move it, you’ll probably never be able to open it up again because all of the soft tissue contracts. And that’s what you don’t want to have happen.  If there’s one message I can give you, don’t let that happen. 

The minority of patients I think benefit from surgery with CMT: Most patients do not need surgery.

The person below is wearing ground reaction force braces. This type of brace, made from carbon fiber or plastic actually bends and stores energy.

So when you have no function in the leg and the Achilles tendon isn’t working, these braces are just terrific.  This person could walk a hundred miles if they had to because their foot’s flat on the ground and they’re doing great. Now, here are all the types of braces there are. Some are off the shelf.  Some are custom made. Which is better than the other?  I don’t know.

 I absolutely think chocolate ice cream is the best. Does anyone disagree?  Some people like strawberry or maybe vanilla, and the problem with the braces is you can’t try them all on unless you go to a spectacular brace shop, which I’m lucky enough to work with at our Center of
Excellence.  Would anybody say that a size six dress of a certain brand is perfect for you?  Of course not. You’d want to at least get it in the mail, try it on and send it back.  That’s what you have to be able to do with braces. Unfortunately, we can’t try all these braces and some of them cost thousands of dollars, so try to go to a brace shop that has a wide selection to let you try some of them off the shelf.

Now that is not the right brace for a for this crooked foot.  Some of you have it. I see this situation every day of the week.  Would anyone put a foot like this into a brace?  It’s like putting a square peg into a round hole.  This is from Friday.

This brace does not work for a crooked foot.

 I was a little delayed today getting my talk all set because this gal just came in. She lives on a ranch.  That’s the shape of her foot. That’s the shape of her brace.  Shame on everyone taking care of her.  Shame on her brace maker. She has pain walking on the side of her foot in a brace that looks like it’s something to a caged up an animal.  That foot should never be allowed to walk the face of the Earth.  That can be made flat, and even if this woman can’t get out of her brace, she can get into a brace with her foot balanced and her body weight plumb lined with no pressure walking on the side of the foot.

I can’t see you all, but how many of you have had or have a callus on the side of your foot?  Right. That’s what happens. So these people should all have surgery, that’s how I feel. Now some people don’t want to wear a brace. 

This is Katie’s Story

“Hi, my name is Katie. I live in Florida and I have CMT. Katie didn’t want to wear a brace. It was in sixth grade when I first started getting made fun of for the way that I walked and noticed that running and keeping up with my friends was becoming more difficult for me, and my parents started taking me to some doctors to try to find out what I could do to help me with my CMT.  With each doctor that I met with, I felt like they didn’t understand my specific case of CMT.  And they gave me some options, like braces and orthotics, and some of them would help me temporarily but nothing ever really helped me. So when I was in high school, I started falling almost regularly, and I missed out on my homecoming and my prom and just gave up on trying to find shoes that fit and started to become really discouraged.”

So Katie was a young woman, and she didn’t want to wear braces. She could have actually been in a brace.  So she came from Florida. She said, “I don’t want to wear braces the rest of my life.”  So I said okay and she had some muscles that were working.  We operated on one foot, and she was incredibly brave and so we operated on the other. Katie could hardly walk without a brace without holding onto a wall.

Many of you know that kind of person.  So the CMT type foot deformity is a tricky surgery. That’s the problem, right?  People have had a lot of issues with it.  There’s so many components to CMT surgery.  The surgeries will take at least three to four and a half hours. There’s no way to get through it quickly.  Basically, the failure of CMT surgery is when we don’t do enough.

So this is what we put on the operative board at Cedars-Sinai.  We put all the procedures someone’s going to have. “Hi, we’re going to fuse a part of your toe joint,” you’d say to a patient, “Okay, let’s schedule you for surgery.  Hi, we’re going to do a tendon transfer on you. Okay let’s schedule you for surgery.” But the tendon transfers are some of the most complicated and extensive surgeries that there is in all of orthopedics except for some spine surgery or hip surgeries with dislocations and acetabular malformations.

Many surgeries in one – CMT foot surgery

Now how do we know what to do? Well, the problem is there is no good consensus on what to do. At least there hasn’t been, but we’ve done a lot of studies on this at Cedars and much thanks to the CMTA for their help.

This was a study we did. It was published in 2018. It was sponsored by the Charcot- Marie-Tooth Association (CMTA) and this was really incredible for us because we won a prize for this operation telling us how to correct the heel varus.  And we won a prize for this as one of three research studies of the year most likely to change orthopedics. I just happened to have it here.

We took a print of one of my patient’s foot – Sarah. And we printed out 18 “Sarah’s”, 18 of these and then we studied them with different operations in the lab, but very exactly, and we showed which was actually the best operations for correcting heel deformities in CMT patients with her type of problem.  Since then we’ve done other research more on heal osteotomies.  We’ve looked at extensor transfers  The most difficult, competitive organization in the world and the most academic is the orthopedic research society.  And Max, who’s going to be joining us, he’s the second author, won a prize here just this past spring for a young investigator’s prize. I mean this is like winning a Nobel Prize in orthopedics and I was actually stunned by it.  But part of the reason is because the whole area of CMT surgery is so poorly investigated, it’s not that hard to do some landmark work if you do the research. 

Now there’s a big hole on how you should do CMT surgery and how it ends up in people and how do people do it. We’re just starting now.  Some of you I’ve operated on. I always say I’m a pretty accessible guy and I don’t hear about too many people doing poorly. I know the ones I’ve had to re-operate on.  I just spoke to a woman this morning where a young girl in New York is not having the motor strength that she needs. So I think I have a sense of it, but we’re going to study it and hopefully publish that by the end of the year. 

So this was a remarkable thing – years in the planning. There were seven past presidents of the American Orthopedic Foot National Society and some of the most famous foot and ankle surgeons on the face of the planet, and with the sponsor of the CMTA sponsorship and Elizabeth’s fire in her belly. we brought these people together.  And it almost killed me, literally, but we finally published a paper on our results, which just came out, and this is a consensus. We didn’t get everyone to agree, but I think just to sum it up here, this is accessible. You can get it through the CMTA and other places and if you’re going to have surgery locally in your area if you can’t come to Los Angeles for some reason, give this to your surgeon and say, listen I’m sure you know all about this but would you mind taking a look at this paper. And if they haven’t seen it they’ll be grateful to have it.  https://www.cmtausa.org/news/breakthrough-guide-to-orthopedic-surgery-for-cmt/

Chicago Think Tank

Consensus Paper – Can be found on CMTA website: https://www.cmtausa.org/news/breakthrough-guide-to-orthopedic-surgery-for-cmt/

  The goal of surgery is to give you a flat foot, and to balance your foot.  My goal is to keep you out of a brace if I can, and I usually can if I’m willing to operate on you.  It doesn’t always work that way, and if we can’t get you out of a brace, at least we’ll get you into a smaller brace.  Much better to wear just a small piece of plastic than some of these bigger, bulky braces.  So what do we do? We transfer tendons, which is moving muscle.  We move strong muscles that are deforming the foot to weaker muscles which are letting the foot become deformed.  We cut through the bone. Here you can see a bone. This is a right heel we’re looking at.

 We take a wedge out of the bone. We twist the heel around.  Here you can see it. So this is the heel from behind on the right side. You can see what we do. We take a wedge out and then we just simply shift the heel.

Okay, now who can you trust to do surgery?  I hear there’s a lot of talk about me in chat rooms and stuff. I said, is there anything I ask my patients they don’t like.  One person said, well you kept them waiting a lot, and another person apparently said, well, I just didn’t like him, but I guess he’s a good surgeon.  But look out there. I don’t hear anybody saying about me, anyway, oh he sold me a bill of goods. He said I’d be good but I’m not. I just do not hear it.  And if you do, tell Elizabeth and she’ll tell me because I want to hear about the failures I’ve had.  I know the failures. I know why they’ve occurred but most of them have just been in the hands of God.  Find someone who does at least one CMT surgery a month.

Find someone you trust


That’s a fair number of CMT surgeries to do. Most very experienced, busy surgeons will be doing three CMT surgeries, maybe two a year. But if you can find people around the country. that’s a good thing. 

When should you do your surgery?  Do it as soon as you know that you or your child can’t live with their foot the rest of your life.  The sooner the better. Dr. K, my partner, because I don’t operate on people really under the age of nine, he just operated on a four-year-old yesterday from Utah, both feet. All these people are the perfect age for me to be doing surgery.  You know, 10, 11, 15, 16, but you can do it anytime. It just gets harder because things get stiffer the older you are. So every day, because of Instagram, I chat with people.  Some people are from Eastern Europe. Some people are from United States, and I have met most of them.  I guarantee you I will make you better. I don’t know how much better.  I’m not 100% sure I’ll keep you out of a brace, but I tell people you’re about a C-. I’ll at least get him to a B +. All right. So all I need is one strong muscle.

All I need is that muscle to move.  That’s it.  I just need any muscle. Is there risk? Of course. 

CMT Foot

The biggest reason surgery fails are that not enough was done. To do 18 surgeries at one time is a lot.  T

 

Sarah was one of the most amazing. You may have seen her. She was 16.  She couldn’t walk. We operated on one foot.  All she said she wanted to do was walk down the high school aisle without having to hold on to her father.  I called her years later.  I said, “How are you doing? What’s going on with you?”  And she said, Dr. Pfeffer, you don’t understand.” She said, “I just walked 10 kilometers around London with my boyfriend in cute shoes.”  So that’s a magic trick all right.  This gal, she said, “I don’t want to wear braces. I’ve had surgery.  I’m going to be the first woman President of the United States.  I’m going off to college.”

There she is.  I mean, I can’t do that.  Could she? She texted me a while ago. She goes, “After five or six hours of walking around campus, I need a little co-op brace. You know, ones that go into your laces because I get tired at the end of the day and sometimes need a little bit of help.” That’s better than I ever thought. 

Q & A

I’m wondering how you deal with toes.  Yeah it’s a great question.   Very succinctly, toes  are among the most difficult, actually, of  surgery to do  and the the longer people wait, the worse off they are. I can  still  fix the rest of the foot, but the toes  become more and more problematic  and  there’s no easy answer for that.  Sometimes as simple as just  transferring the tendons. Sometimes we just cut the  flexor tendons but I don’t like to do  that in someone who has a motor disease.  And what I’ve been doing lately with  severe problems is we actually have been  fusing these joints. It’s okay because  the joints are useless. It’s not doing  anything for anyone except getting in  the way.  So we fuse the joints and leave the  tendons alone  and and we can have some beautiful  results with that. The problem is  it’s a lot of surgery. That, in and of  itself, that operation could take an hour,  hour and a half. To add that onto a four  hour operation …  someone like the boy I’m operating on on  Monday who has all that  may have to come back, he may for the  toe operation.

I had foot surgery, now my knee and hips  are not aligned with my feet and I am having gait problems as well as some knee and hip issues. I’m wondering  if that is because she waited too long and  the CMT foot made her walk differently  or do you do gait analysis beforehand?  Have you heard of these problems?    Someone has foot surgery. They get  deconditioned and the hip muscles which  are vulnerable to begin with, and the  knee muscles  get weaker, right? So they just get  deconditioned. I know of one person in my  career from Santa Barbara,  and she had foot surgery. She was, you  know, recovering  and then she had that problem. You know,  and all of a sudden her hips started to  have a problem.  It’s really really rare if the foot’s  have been bad … feet have been balanced  properly. My first thought is that the  surgery didn’t work on the feet and that  they’re imbalanced.  The key is to remain conditioned, even if confined to a bed. Get some five pound  weights on your ankle and lift up the leg.

Do you ever do both feet  at the same time? 

Never. You could do double surgery, like in a four-year-old like yesterday where Dr. K  did that.  Where you can just carry them around  easily, but no,  an adult is going to be completely  impaired because they can’t put any  weight on their foot for six weeks.  Yeah. They would have to be tiny.  Carry them around to the toilet. Carry  them to the chair.  What weight would that be? I don’t  even know. You know, 50 pounds  if dad’s strong.

Is there a particular age you recommend surgery?

There’s not a specific age, but how do you  know  to bring your child to trust you with  his feet or her feet?  When do you do it? Well, it’s absolutely  the  most important question anybody can ask,  and I don’t have an answer. To operate on the crooked foot at any  age,  operate certainly on the young  adolescent at 12 or 13,  as soon as you know that person’s not  going to live with that foot ideally for  the rest of their life.  If you look at your child, your friend,  and you say  I don’t want them to have that foot the  rest of their life, that’s the time to  have surgery. 

Since CMT is a progressive disease  do you do surgery and then 20 years  later you have to do it again  because the foot deforms or what is your  experience with that? 

There’s no literature on that whatsoever.  The study that we  started in 2017  will be coming to fruition soon. I said   I told you, anyone I’ve operated out  there  please answer us when we write to you,  and we’ll follow these patients along  forever, and the only way  anyone will have an answer for that is  in 2037 when those patients are still  around.  Most … many of them … many of them were  young and we’re going to find out how  they’re doing  but I can tell you this. If anyone’s  considering surgery  and they’re not doing well, don’t delay  because someone says, tells you, you’re  just going to be paralyzed in 10 years  anyway.  That’s not my experience. I’ve been  operating for 30 years  in California and no one has ever come  back to me and said  the operation hasn’t worked because I’ve  gotten weaker,  ever. And I’m around, you know, so I’ve  never had that. So I don’t  think these things progress. and I    personally think that when you do this  on a young person …  this is really critical … what do you  think happens? And we’re doing a study on  this.

Is it true you should not operate on children  until their bones are finished  developing? Is that sort of an  old school philosophy?

No, it’s an old  school philosophy. Just  throw it out the window.

How can you find a foot and ankle surgeon,  one who really knows what they’re doing on  the CMT foot, 

  I want people to come here if they  can.  I’m  amazed but I admire that  COVID is not stopping anyone. Tomorrow  there’s a girl from Texas  and she’s driven up. There’s a boy next  week from New York, and he’s flying in,  you know.  So it doesn’t seem to stop anybody much  for the CMT and they think it’s a  good time, right, because schools are  virtual. So all of a sudden  someone’s saying, well, this is not worth  it to be freshman in college for seventy  thousand dollars a year. I’m gonna get my  feet taken care of.  People come, I want them to stay.  A lot of surgeons wouldn’t want that,  but I want the person to stay here for  two weeks.

Now it’s a big  city and a lot of people have relatives  and I would say what I tell everyone. You  can get a hotel  out of town for $59 somewhere  a week and you can get a hotel in town  for $5,900  a night, and I’ve had both types of  patients.  Normally the former than the latter  but you stay and then the sutures will  come out in two weeks and then you go  home.  Insurance will … we’ve never been denied  insurance because most …   if you’re in North Dakota …  in your town the insurance knows that  there’s nobody who’s going to  want to do this, and if they do want to  do it, the patient will say doctor how  many have you done?  Have uoi done hundreds of patients, the way  they have at Cedars? It’s too difficult  a surgery to take on you know  so the the surgeons don’t want it. Even  the HMOs will allow people that …  one of those people I showed you is  from an HMO, which is very restrictive  healthcare, right,  in Hawaii but the HMO doctor  doesn’t want to do it.  Medicaid and the medical patients aren’t  allowed to come  but almost all insurances will allow  this.

I’m an employee. I don’t get a penny  from doing the surgery,  just not a penny. I’m an employee of  Cedars and Cedars is part of almost  all plans.  And the last thing I would just say is  if somebody doesn’t allow you to come at  first,  they will because all you have to do is  say this is where I want to go.  Are you willing to take the  responsibility,  doctor, insurance plan, but I’m not going  to do well.  And the answer for that 99% of the time  would be,  why don’t you go to Los Angeles? Now there  are  certainly people who do what I do in the  United States, but they’re large areas  where they’re not.  Okay, that’s a really helpful answer.  Great to know.  I just said the cash price is just  insurmountable. I just …  it’s tens and tens of thousands of  dollars. So you really need to  to go through insurance and get that. 

So in that regard  we’ve never had anyone turned down. Sal  Rosette, my surgery scheduler …  I was working late night in the office,  he was leaving late and I asked Sal  about this.  And he said to me is exactly what he said. I don’t know if it’s true or not.  He said, Doc, he goes, we have no one ever  turned down by  insurance for you. Each doctor has  something called an NPI number that  designates them.  He said he’s at the insurance company  I’m talking to them on the phone  and they say well what’s his NPI number  and it’s CMT  and the insurance just  immediately says, oh yeah, you can go  there.  I don’t know if … I don’t know if he’s  just reading into that  or not. I said, so they’re tracking us  with CMT and my doctor number? He goes. ” they must.”  Blue Cross, he said … I don’t know if it’s  true … but according to him he said Blue  Cross knows about you  and CMT. Anyway that’s a long answer.  That’s okay, very helpful. Back  to the age a little bit, and I know you  spoke to the crooked foot  being, you know, of surgical  possibility at any age. 

What are your thoughts on ankle fusion?

There was a consortium  in Europe which you know about. Dr.  Shy was there and others  looking at this, the  surgical issue,  and we met and I was amazed that one of  the surgeons there does a lot of CMT  surgery said  we do fusions in everyone. We do tendon  transfers and fusions. 

So I was born with a  fusion  You can do okay with the fusion of the  joints that are usually involved with  CMT,  but you’re not perfect. And I had …  if my foot moved perfectly, I would not  have dislocated my ankle when I fell in  the pool recently.  You  don’t want to do a fusion in a young  person.  If you have to, it’s not the end of the  world.  Let me tell you, if anyone’s telling you  who has CMT  that you need an ankle a fusion, you need  another opinion  from out of town.

But never  fuse an ankle in a CMT patient  as a general rule. Why? Because you’ll do  much better with those braces.  When you fuse the ankle, you take all the  spring out of the ankle  and you negate the ability of using  those wonderful braces, those ground  reaction force braces that are made now,  and those braces are anything from over  the counter or  basically online to  ten twelve thousand dollars a pair, so  there’s a lot of options.  But you have options unless you get your  ankle fused. 

Who should do my surgery?

  There are orthopedic foot and ankle  specialists. That’s who you want to see.  An orthopedic  MD foot and ankle specialist … M-D,  someone who went to medical school.  You know,  that’s the first thing. Not a podiatrist. If there’s a podiatrist  out there who’s done 100 CMT surgeries,  then fine,  I have no problem with that. You know,  podiatrists are not medical doctors.  There’s some natural competition  between orthopedic surgeons and  podiatrists.

I’ve operated on always over 40 000  people with CMT. Wow. In this one you need somebody with gray  hair. I am  so much better at this than I was 15  years ago.  Go see somebody. Contact me if you want.  Set up a telemedicine visit,  and I’ll tell you whether I agree with  your opinion or not.

And I know everybody,  and I’ll secretly tell you if I think it’s a  good person to go with.

The Consensus Paper – Take that paper, put it in your pocket  bring it to your surgeon …  learn it. CMT patients are pretty smart  people.  And learn what’s in that paper. Ask a few  questions and see what the answers are.  What we wrote in that consensus patient  paper will change  and it’s not the final answer, but it’s a  very good start to knowing who the right  surgeon is for you, right?

Elizabeth: I can’t thank you for being so  passionate about our cause,  and you’re very approachable, and even  in  the world of orthopedic surgeons. And  it’s you guys are very very busy,  and very task oriented, but you care. You  have heart.  You have soul. You follow up with your  patients.  I mean, the quality of care that you give  is amazing. So not only are you a very  competent surgeon, but also you’re  somebody that’s approachable and you can  talk to and you’re interesting.  And so A+. Thank you so much.  Thank you so much for this wonderful  presentation and caring about our community. 

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