The ankle fixation is not the best solution for the unstable cavus varus feet, by Charcot-Marie-Tooth

I begin to write this post, after having a forty-five minute video-consultation with a patient from Australia, who lives in Brisbane, in the east of the continent. She has unsightly cavus varus feet,  by Charcot-Marie-Tooth. Like so many patients in many parts of the world who suffer from Charcot-Marie-Tooth disease, they reject the treatments that many hospitals want to give them. The fixation of the ankle, extended to the medial column of the foot and the operation of Jones that fixes the big toe when they are in claw, are the techniques without principles with which they wanted to treat it. Now she wants to come to Spain, to reconstruct her feet and abandon the orthoses she now uses and that apart from not cure the problem, she causes sores on the outside of the ankle, as you can see in these pictures.

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Again, in my opinion, mistakes are repeated in not recognizing that the problem is neuromuscular and that the bones are the ones that suffer the consequences of this. If to reconstruct a neurological foot, they forget to handle the main causes of the deformity as the muscles. This type of surgery is not only doomed to failure, but also to the worsening of the functional situation of the feet of these patients.

This is why I show you the case of this patient from Jaén, in the south of Spain, with cavus varus feet and ankle instability by Charcot-Marie-Tooth, type 1. We have operated to reconstruct her feet, as well as repairing the ankle ligaments, to make her walk back steadily and with her ankles keep moving.

She, an aeronautical engineer, started with the disease in adolescence, affecting both feet. The left more damaged than the right. Both with deformity in equinus cavus varus by paralysis of the anterior tibial and the peroneus brevis muscles. Then over the years and increased body weight, they caused repeated ankle sprains that led to the rupture of the external ligaments of the ankle. Her lack of treatment is what triggered that apart from the deformity, added serious instability of the ankle.

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More than a year ago we operated on both feet at once, correcting the malalignment, giving stability to the foot and transferring tendons to the dorsum of the feet. With that we managed to keep the foot from falling when walking. But our surprise was very great when she began to walk and the ankle turned again to deviate. And this is not because the reconstruction was done wrong, but it was because of the fact that the ankle instability, could not be diagnosed due to the ankle deformity. When this was corrected, the instability of the ankle appeared. For this reason we had to take our patient back to the operating room and anatomically reconstruct the ankle external ligaments, with a patient’s own tendon graft, a knee muscle flexor. In order to repair the last sequel of Charcot-Marie-Tooth disease.

The principles of foot reconstruction with Charcot-Marie-Tooth

Especially as you can see in the video, recorded 5 months after the last operation, our engineer normally walks again with her feet stable, well aligned and with his muscles balanced and also maintain the mobility and stability of the ankle. More importantly, our daily work and effort has its reward, as we currently have patients coming from all five continents, who come to IICOP.

This is a reward for doing our work well, we obviously can not cure everyone, but this makes Charcot-Marie-Tooth patients choose our clinic to treat the orthopedic problems of this disease.

Families with Charcot-Marie-Tooth and foot and leg problems, we can reconstruct them satisfactorily

I do not know if you know that Charcot-Marie-Tooth disease is the hereditary neurological disease that affects more families. It is also the most common, affecting entire families and several generations. Many of them are unaware that they can transmit the disease to their decendents. And this is an obligation that we have doctors who treat this type of diseases, with families with Charcot-Marie-Tooth and have problems in the lower limbs.
More important are the observations we are making when we see them for the first time, it is the consanguinity of several of them. This is not always the case, but more often than not we see it. This is not to say that all patients are consanguineous, but we can estimate that 15% of the patients we treat, if there is this family problem.

In the case of this family that I show you, we have already operated three of its members in the IICOP, in Madrid, Spain. Two brothers and the son of one of them. They all had equinus cavus varus feet.
IMG_5032 IMG_5031 IMG_5033Of the brothers the man had a terrible equinus cavus varus feet,  the woman did not know very well how were his feet after five operations. These had been done without following the basic principles for treating neurological feet, so the results of the surgeries had not been satisfactory.

Apart from this, the three of them are already operated, the male brother had deformed feet and tibias, so it was necessary to properly align these and of course correct both feet, to make them stable, well aligned and muscularly balanced. The nephew, a 15-year-old pediatric patient, had the same problem as his uncle. Both show an important muscular atrophy in the legs, but not everything due to the disease, but to the lack of physical activity that both had and perhaps to the doctors who had seen them.

After almost a year from the operation I show you the images and videos of how they were before their feet and how they are now. It’s also different from how they walked before and how they do now. I believe that the difference is very great and as the daily study, the experience and the constancy in solving the sequels that produces in the families with Charcot-Marie-Tooth disease, we can have these results, that are more than satisfactory.

A long way to correct these equinus cavus varus feet deformed by Charcot-Marie-Tooth

This adolescent has had to go a long way of several years to see corrected her feet equinus caves varuss by Charcot-Marie-Tooth disease .

POST1-768x799Her mother, also affected by the disease, was excited this morning to see how her daughter walked with her feet already corrected, stable and well aligned. More importantly, she was very happy to see her daughter’s happy face as she walked.

Cavus varus feet by Charcot-Marie-Tooth disease

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Previously operated with poor result

Because since the age of 7, already started to walk badly, to have frequent falls. Not being able to make a normal life like the rest of the children of his age. She was operated in a public hospital in Madrid, Spain, not correcting the problem, where they returned to make the same mistake that is still being made in these patients.

Because you can not treat a lesion of the muscles by surgery only of the bones and forget that it is necessary to balance the muscular functioning. From that operation follow some of the screws placed in the bones. The result, it is clear an uncorrected deformity and leave it seven years more doomed to have serious problems to walk or to run. Not even able to wear normal shoes.

The operation we have done at IICOP

POST3 POST2 POST4-768x761A few months ago, we had surgery, stabilizing the foot, even rotating the distal tibia. As well as correcting the alignment, to get a foot plantigrade and transfer tendons to the back of the foot so that it does not fall when walking. We have not removed the previously implanted screws because we would have further damaged the bones of the back of the feet.

Not yet recovered, because their inability to walk, has translated into healthy and functional muscles, but also atrophied, by the lack of activity. I am optimistic for the many Charcot-Marie-Tooth patients we operate. And I know that with their personal effort, they manage to overcome this situation and return to a normal life.

Who said that patients with equine feet by Guillain-Barré’s disease, never returned to run?

It is clear that whoever does that statement is wrong, because patients who come to IICOP, to treat their equinus feet for a sequel of the Guillain-Barre’s disease, run again after being rebuilt their feet. The club foot splints are over, the eternal days of rehabilitation that are sterile and never lead to the recovery of these patients. Where apparently there was no functional muscles, some of these turn to act, not as a driver but as tensioners, so that the foot will not fall and allow effective and smooth running. When you check in a few months in the query, you can check the perimeter of his legs has grown in a significant way as they are able to walk without problems, thanks to having recovered the stability of the foot, with a very good propulsion . How do we get this? For applying reconstruction techniques of modern Neuro-Orthopaedics, which as you can see, we have improved obtaining these results. You can see in these two videos (Sorry because the first is in Spanish) as the patient came to our clinic and he is now able to run at a good pace on a treadmill. Must be overthrown so many myths about neurological patients, which many take as hopeless cases, when are the opposite, a field in which you can cure many of them to have a normal life

Two United States children come to IICOP, in Madrid, Spain, to operate them of the clubfoot and pes calcaneus with ulcers by spina bifida and his sister of teratogenic clubfoot

Maybe for us it’s a dream that come true, but we have reached when patients of the United States come to Madrid, Spain to treat deformities of their feet. This has been achieved after many years working hard and being continuously formed.

Many people think that hospitals and doctors in United States are the best of the best. I just saw on a digital platform some conferences about treatment of neurologic foot deformities and truly I tell you the low level they have. Over the years we have shown that not always everything that is written in English, is the best. There are many medical disciplines in which they are far behind compared to Europe and to us in Spain. Especially in the surgical treatment of neurological feet.

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This is the case of these brothers who have come from San Jose, California is the confirmation of what I mean. They were being treated in a hospital linked to the Stanford University, in Silicon Valley. First with conservative treatments that were useless and when they saw that these treatments did not give any results, they told to the parents the possibility of a feet surgery, in which only they would make a bones fusion. Of course, they did not speak at all about tendon transfers, stability and alignment of the feet. Therefore before the mediocre expectations that offered them, they contacted us after looking at several countries and came last December to operate them.

A4-1011x1024 A5-693x1024This is not an economic problem, because in Spain is it a cheaper surgery, nor is it because they did not speak Spanish. They came because they found the quality that could not be given at home.

In the boy with with spina bifida we employ seven hours to reconstruct the right clubfoot,  with an ulcer that we debridet and closed, in addition we corrected the tibial torsion, the foot and transfer tendons, to make the foot works. In his left foot that was in calcaneal position by paralysis of the calf muscles and a heel ulcer. We correct it by a reverse Lambrinudi operation and transfer of several muscles to the Achilles tendon, also we repaired a terrible claw toes and close the ulcer.

E1 E2-937x1024The girl, with congenital/teratogenic clubfoot, presented a very structured deformity, we get also correct with a Lambrinudi operation and transplantation of various tendons on the dorsum of the foot, so she can actively lift the foot when walk.

You see our little International Orthopaedic Foot & Ankle Surgery Institute, in Madrid, Spain, is at the forefront of orthopedic foot surgery, innovating and not being afraid to make difficult and very complicated operations. We are proud that patients from United States choose us, to treat their foot problems.

I show this video so you can see as they walked patients before surgery and the testimony of the family before returning to California.

Until next post

The distrust has turned into gratitude after corrected their clubfoot for Charcot-Marie-Tooth

Over a year ago I told you the case of this patient in northern Spain, which has both clubfeet by Charcot-Marie-Tooth. The first time I saw him, scared and many doubts, came because the city hospital told him that only he had to do a triple arthrodesis. This technique is known in which most hospitals in our area, but the problem is that making a triple arthrodesis, the deformity is played back even worse.

We had a similar case of another patient two weeks of the same, which had caused him a paralysis by injection into the buttock and damaged the sciatic nerve. This brought a clufoot, which was operated thirty years ago and made a triple arthrodesis, but the doctors did not correct the lack of muscular balance.

A-300x250 IKER3-300x288The result was a deformed foot, because he set foot without correcting the poor position of the bones and muscles did not play well. We have spent nearly six hours in the operating room, to correct the damage that was created in the previous surgery.

IKER6-189x300 IKER4-213x300Our patient with Charcot-Marie-Tooth, we have operated first the left foot and this year the right, aligning the foot bones, making a minimum arthrodesis of the hindfoot, for stability and especially transferring several muscles now, as you can see in the video, he can walk normally now, lift his feet and not stumble when walking. He has regained confidence after seeing what we told him is fulfilled, he and his family are happy because again can walk properly, without crutches. We go on improving our techniques by experience that gives us being, IICOP is perhaps the center operates more patients with Charcot-Marie-Tooth disease in our country and our results speak for themselves.

But we also know that we are not resting on their laurels and that each patient is challenging, innovating and improving them treatment. To give you an idea has nothing to do with how we operate feet now than a year ago, by the way we have changed the techniques, improving them. This is only obtained through study and experience to treat many patients with CMT.

The beautiful small gypsy with spina bifida, can walk with their plantigrades feet, after the extraordinary correction of their clubfeet

If you remember those who follow this blog, last July, we operate this child of five who had terrible right clubfoot by spina bifida and congenital the left. His father said me: “Doctor please put pictures of my daughter for many parents to know that you can correct  clubfoot spina bifida”

A1-211x300 A2-197x300So we did, we correct these tough feet, that none of the three hospitals had treated definitely. We had to align the bones of the feet that were misplaced, both tibias had to align in its part closest to the ankle and finally we did a tendons transfer to her feet moving again. Do not forget that the involvement of the right foot is basically a muscular problem.

BLOGVAL3 BLOGVAL 2 BLOGVAL1Some days ago another patient came to see me, she was eighteen years old with spina bifida, which had been operated several times and none of them were transplanted tendons. When these problems are produced only by muscle paralysis of the leg, and bones are deformed by the muscle imbalance. Therefore only do surgery to correct bone is a waste of time because it repeats the deformity, as had happened to her.

Last week when our protagonist came to IICOP,  to see me and to explore that their feet are fixed, are plantigrade and can walk normally. I share with you these images before and after so you can see the change. When we started talking as had been the evolution, her mother said the girl had told her, that she wanted to give me a hug. With what I like the hugs and kisses! So we hugged and she gave me a tender kiss on my cheek, he got excited.

The parents are happy, the patient is happy with her “new” feet, she has returned to school like any girl of her age and we are happy to having been able to solve such a problem.


Charcot Marie Tooth: Recovery exercises

Conservative treatments of Charcot Marie Tooth disease are ineffective because they do not stabilize the foot and aligned it properly. With Surgery treatment can repair all these problems, making plantigrade feet and well aligned. When transferring tendons of muscles that work, we prevent the re-deformation. In cases of complete paralysis we can also transfer tendons back of the foot to act as a spacer preventing the fall in the equine foot.

After undergoing surgery to correct deformities caused by the disease, it is necessary a process of rehabilitation to regain mobility and strength in the joints, so that allows to walk again normally. Recovery treatment may be prolonged for a period of about 6 months.

Patients should operate an intensive physiotherapy program to increase the strength of leg muscles and restore flexibility.

Physiotherapists are specialists in how the human body functions and moves. They are specially trained to understand how the joints, muscles, tendons and ligaments of the body work together and to spot any problems.

Download “The patients Guide to Charcot Marie Tooth” here

Although physiotherapists (often called physios) cannot stop the progression of CMT, they can often spot a potential problem – like any stress you may be putting on other joints like your knees or hips – early enough so that it can be treated and, possibly, prevented. This can help prevent secondary weakness causing other problems.

American College of Sports Medicine, through its “Exercise is Medicine” (EIM) incorporate as objective the assessment of physical activity and exercise prescription as a standard clinical method for the prevention and treatment of disease. No doubt, the objectives described include patients with Charcot-Marie-Tooth (CMT).

Exercise and physical activity are safe and effective for children and adults with chronic diseases such as CMT. In fact, organizations like the American Medical Association, the Institute of Sports Medicine, the United States Department of Health and Human Services and the Office of the Surgeon General of the United States recognizes that children and adults with diseases and chronic disabilities should practice regularly exercise and physical activity.

Download “The patients Guide to Charcot Marie Tooth” here

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Below are some frequently asked questions about exercise and physical activity for patients with CMT:

1. Who should do exercise?

Both children and adults can do, should practice regular physical activity and exercise.

2. How much physical activity and what types of exercises should be performed?

Children with CMT should carry out activities and aerobics, balance, muscle and bone strength at least one hour of exercise or physical activity per day.

As the CMT is a motor and sensory neuropathy, it is important to recognize individual limitations in order to minimize the possibility of injury. In most cases, motor control and sensory awareness of the ankle and foot are limited. Under these circumstances, the activities that involve running and jumping – or other activities in which the feet leave the ground continuously or intermittently – perhaps are unsafe.

They could be considered another kind of exercises and activities, including:

  • riding a bicycle;
  • swimming;
  • Resistance exercises (where children use their own body weight, elastic bands, machine and hand weights);
  • certain martial arts (such as tai chi).

Download “The patients Guide to Charcot Marie Tooth” here

Furthermore, it should encourage children with CMT to participate in appropriate forms of play. Adults with CMT should also be involved in some aerobic exercises and muscle and bone strength.

It is recommended to practice 150 minutes of physical activity and aerobic exercise per week. This activity should be done in periods of moderate physical activity. The exercises and activities of bone and muscle strengthening should be practiced at least two days a week.

Some examples of activities and exercises with less impact are:

  • stationary bikes, tandem and semihorizontales, elliptical machines, rowing machines;
  • swimming;
  • aerobics;
  • vigorous gardening (with components such as digging and lifting);
  • Housework (eg sweeping, washing and putting away groceries);
  • Resistance exercises (with bands, machines, dumbbells and / or resistance exercises body weight);
  • yoga;
  • Tai Chi.

Adult patients with CMT should avoid inactivity. Therefore, practice a little physical activity is better than doing nothing.

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