Her 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
A 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.
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
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.
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.
This 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.
The 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.
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.
The 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.
Our 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.
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”
So 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.
Some 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.
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.
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.
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;
Resistance exercises (where children use their own body weight, elastic bands, machine and hand weights);
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;
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);
Adult patients with CMT should avoid inactivity. Therefore, practice a little physical activity is better than doing nothing.
At present, there is no specific treatment or cure for the underlying genetic cause of CMT. Neither are there any drugs to stop or reverse the damage caused to the peripheral nerves. But, although there is no cure for CMT, there are a number of treatments available. These can slow the development, or ease, some of the secondary complications linked to CMT, greatly improving your quality of life.
The objectives of the treatment are:
1) Improve the ability to walk, this helps to avoid problems of everyday life to move and improve the mobility of people with this disease.
When frequent falls or sprains in adolescence appear shortly feet begin to deform and hurt. So these measures implemented correctly, can be useful. In our experience, CMT, is a disease that appears on the pre teens and their evolution to between 35-40 years of age, so the sooner treatments are applied, people who suffer improve their quality of life.
All of them are designed to optimize the position and support, but in the XXI century are obsolete. Not only is correct deformities caused by the disease, but they have a very detrimental to produce atrophy of the rest of the muscles are working and joint stiffness effect where they are placed. The Orthotic usually operated, unattractive and often quite uncomfortable to wear, often causing chafing and blisters.
– Ankle braces: Ankle braces may offer some support to prevent too much movement if you ankles are weak.
– Ankle foot orthosis (AFO): The AFO braces or splints equine anti begin under the foot and up to the back of the calf, generally is tied to the ankle. These braces are similar in length to the calf and can be made of plastic, which provides a flexible design and counteract foot drop.
I have told you again, as there are techniques to correct cavus varus foot by Charcot-Marie-Tooth, which do not give good results when it comes to correct the foot function. These techniques are repeatedly published in books and journals, usually in United States and Europe. But I really doubt that they are supported by evidence of the complete correction of the deformities caused by the disease. Nevertheless they continue to spread by many different means. This causes many doctors to learn and apply, giving mediocre or bad results.
And why this happens? Basically the lack of global information and broadcast domain by American doctors. And I say this with all respect as one of my mentors was Dr. Ted Hansen, from Seattle.
This is the case of the patient who has come to the end of April from Buenos Aires, Argentina, with cavus varus feet by Charcot-Marie-Tooth disease.
She underwent surgery in a big hospital in her city, and the doctors who operated her, accurately applied some of those techniques published in international journals or books. The result was a small disaster, because the deformity was not corrected, as you can see in the first pictures, taken before surgery.
And the reasons are clear, these techniques do not correct well the three problems with this type of feet, which are stability, alignment and muscle balance of the foot. So the deformity arises again.
We have applied the most innovative techniques in the reconstruction of neurological foot and as you can see from the feet’s pictures have changed dramatically.
Now they are plantigrades, well aligned and most importantly, as you can see in the video, she is able to move her feet, thanks to the muscles that we have transferred. I think this is a sign of a well done job and especially away from those techniques that are published.
She has returned to Argentina to continue her recovery, but hopefully soon again walk on her feet definitely fixed.