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Charcot-Marie-Tooth Guide for Orthotics

At Ortho Rehab Designs we carefully evaluate your specific mechanical profile. We are American Board Certified in Orthotics and Prosthetics. We stress that if you are to be treated by an orthotist for CMT that they should be board certified in the discipline of Orthotics. We feel this is essential in order for basic standards to be met. We will work with your physician or physical therapist in order to ascertain muscle strengths and physical profiles that will help in the design of your orthosis. We pride ourselves in listening to the needs of each patient. Each device is designed for that specific patient's needs and physical mechanical profile. Our approach is straightforward and honest. We will always be attentive to your needs and goals.

Contents:
ABOUT ORTHO REHAB DESIGNS
QUESTIONS AND ANSWERS
VIDEOGRAPHIC ASSESSMENT
ANALYSIS OF PATHOLOGICAL GAIT
WHAT KIND OF BRACES DO YOU RECOMMEND FOR CMT?
WHO ARE YOUR PATIENTS?
PROGRESSION OF CMT
WHAT TYPE OF CMT DO I HAVE?
WHAT IS DEFORMITY?
BALANCE AND STABILITY
CORRECTION vs. OVERCORRECTION
GOALS FOR CMT
DIAGNOSTIC FITTING
CREATING CORRECTIVE ENERGY
TESTIMONIALS
LINKS





ABOUT ORTHO REHAB DESIGNS

I established Ortho Rehab Designs in Las Vegas in 1991. My goal was a focus on hard to fit patients that required creating stability and prevention of further deformity. My primary goals have always been to increase function and endurance for my patients. Being born with a foot deformity and defects in the skeletal structure of my right foot, forced me to be an orthotic wearer since the walking age of one. Throughout my professional life I have always sought out more ways to control my foot structurally and maintain as much function as possible. I have found that the combination of carbon graphite and silicone is the best way to achieve this with maximal correction and maximal comfort. When you visit Ortho Rehab Designs I would be glad to show you my foot, and can give you a living example of what can be done. While I am not neurologically impaired, my foot deformity is at a severe level. This has led me to develop bracing systems that can prevent further joint deterioration and maintain function. As my goals are similar to yours, I do not want to have joints and muscles that deteriorate with age. The goal is to maintain as much of what you have throughout your entire life.

Mitchell S. Warner, CPO
© Ortho Rehab Designs, 2002

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QUESTIONS AND ANSWERS

As you are currently researching bracing for CMT, you will have many questions. We will try and address the most common ones here. We urge you to e-mail us with any questions or concerns you may have.

Question:
I have a high steppage gait. Will this disappear with braces?
Answer:
Yes, but only if you are braced in proper alignment.

Question:
I feel off-balance in my current AFO's. Why is this?
Answer:
It is generally due to a poor fit, or poor fit in conjunction with poor
alignment.

Question:
I feel extremely tired after walking a long distance, is this related to
my braces?
Answer:
This is a strong indicator that you are not getting the benefits from
an energy return system. Or you might be walking with gait
compensations that are causing early fatigue.

Question:
With my current brace I am getting severe pain in my foot from the
footplate. Why is this?
Answer:
Generally, this is due to poor mold rectifications. Some
practitioners overcorrect, or there simply might not be any
correction at all. This is something that needs to be checked.

Question:
What are floor reaction forces?
Answer:
The reaction from the floor as an object, such as a ball or a foot, or
a braced limb, strikes it.

Question:
With my current braces I try to get to a faster walking speed, and I
have trouble sometimes as there is a hesitation when my foot tries
to roll over. Why is this?
Answer:
It can be because: 1) there is not enough energy loading, and
consequently not enough energy released by your brace. 2) if
your brace has a full length footplate, and you have strong
quadriceps muscles, you will not be able to bend your metatarsals
enough. In addition, a full length footplate with a person who
has good quadriceps, causes a tremendous amount of floor
reaction. Floor reaction used in bracing systems is generally done
for the purpose of creating an extension force at the knee, and
preventing the knee from buckling. This is not a desirable force
system to use with a person who has good quadriceps.

Question:
How fast should I be walking?
Answer:
The average human walking speed is 3.0 miles per hour.

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VIDEOGRAPHIC ASSESSMENT

At Ortho Rehab Designs we provide CMT patients with videographic assessment on request. However, if you will be seeing us from out-of-town, a videographic assessment is necessary as a tool to pre-evaluate you before you come to our office. From this assessment we can get a preliminary evaluation and determine what gait deviations and deformities your body is experiencing and this will allow us to make orthotic recommendations based on that. Please keep in mind our evaluations are limited to what we can assess on the videotape and computer. You will find that in the orthotic field some facilities may use similar videographic assessments and make assumptions that certain ligaments are stressed or that certain bony deformities are present. We stress that this cannot be ascertained medically unless a patient has had an x-ray or MRI. Only x-rays can determine deviations in the skeletal structure, and only MRI's can determine ligamentous damages; with medical certainty.

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ANALYSIS OF PATHOLOGICAL GAIT

Systematic analysis is a valuable clinical tool for determining the nature and severity of the patient's condition with skeletal or neuromuscular deviations or deficiencies. This also helps assess the adequacy of orthoses and other aids intended to assist in achieving a more normal ambulation.(1)

Many gait deviations are created by the neuromuscular patterns produced from CMT. These are a result of nerve loss and muscular weakness and ligamentous laxity. Some of the more difficult gait deviations you might have noticed on yourself or a member of your family might be as follows:

Hip hiking
Circumduction
Internal or external limb rotation
Abnormal walking base
Lateral trunk bending
Hyperextended knee
Excessive knee flexion
Insufficient toe-off

When we do a videographic gait analysis of a patient we look for these gait deviations. This helps us assess your walking pattern, and how the orthosis will need to be configured to help normalize these deviations. This evaluation gives us a preliminary guideline on what to look for, and will ultimately be checked in the diagnostic stage.

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WHAT KIND OF BRACES DO YOU RECOMMEND FOR CMT?

At Ortho Rehab Designs we specialize in energy loading, or what is also known as Dynamic Release bracing. Our bracing designs for CMT are all mostly based on dynamic release. We are the original inventors of the Double Helix AFO. In addition, we have just recently introduced our newest invention, the Helios™ Orthosis. Helios™ stands for Helical Energy Loading Integrated Orthotic System.

The Helios™ incorporates an extremely high modulous carbon graphite composite that creates a very high level of energy loading and dynamic release. In addition, the Helios™ incorporates a footplate using a custom designed silicone padding system. Most other braces that you will see in the orthotic marketplace use materials known as plastazote or pelite. With plastazote or pelite you will get the intended initial correction that you desire to maintain your foot in proper alignment. However, within as little as a few weeks plastazote and pelite start to compress from normal weight bearing. As it compresses you will lose your initial structural alignment.

The reason we use silicone is because silicone maintains its original durometer insuring that you maintain the initial alignment you were corrected in, and in addition, silicone is much kinder to your skin. You can tolerate greater loads and feel more comfortable throughout the day using silicone. I have used silicone on my own foot and this is what led me to realize its value, and to incorporate it into my bracing systems.

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WHO ARE YOUR PATIENTS?

We specialize in bracing for patients who have neuromuscular diseases. Most of our CMT patients come to Las Vegas from out-of-state. We have many patients using our bracing systems who have had them a long time and are doing quite well. We monitor their success as time goes by. We would be happy to give you their names for referral so you can find out for yourself the improvements our bracing systems have made for them, and the professional care they received at our facility. We will provide you with follow-up care as long as you need it.

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PROGRESSION OF CMT

If you were just recently diagnosed with CMT, you might be very concerned about what to expect. As the disease progresses, symmetrical muscular atrophy and weakness become apparent in the peroneal nerve muscles and toe extensors.(2) Subsequently, the disease may advance to involve the tibialis anterior muscles, in which case there is a bilateral drop foot gait.(3)

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WHAT TYPE OF CMT DO I HAVE?

This is a question sometimes asked by CMT patients, although many CMT patients know what type they have. The following is just a brief outline to help you to become more familiar with what you have. If you know the type you have when you call us or send in a videotape for assessment, we will automatically know what to look for in your correction system.

CMT Type 1
A pes cavus or high arch foot

Patients with CMT experience muscle weakness, or an imbalance of muscle strength which causes a pes cavus foot. In this type of foot the arch is raised into a position that is classified as a clinical deformity. The muscle that is responsible for this is the tibialis posterior. The forefoot adducts in what is an inward angulation. The back of the foot, or the hindfoot, usually goes into a varus position. This profile needs very careful analysis for proper correction because many times there is what we call a calcaneal varus contracture. Therefore, it is necessary to address the calcaneal varus contracture as a separate component. In these situations, we would like as much input from your physical therapist or physician as possible.

The pes cavus foot usually has four basic characteristics:
1. An unusually high longitudinal arch.
2. Toes that are clawed.
3. Prominent metatarsal heads.
4. Foot is shorter than normal.


The clawing of the toes is due to a contracture of the toe extensors.(4)
 

CMT1 is the most commonly diagnosed type. Patients are inclined to manifest a pes cavus deformity. In addition to the foot angulation if left uncorrected, the alignment will affect the knee. Many patients find as soon as they have heelstrike with the floor, they feel their foot and knee rolling outward. As such, many patients that are affected by the pes cavus foot have a very narrow walking base. Patients have told me that other practitioners have instructed them to walk with a wider gait. Although this sounds reasonable, it will only encourage awkwardness and more compensations by the rest of your muscles. When addressed properly, the pes cavus foot with corrected alignment will reduce fatigue, thereby allowing greater velocity and more endurance or increased walking time.

CMT Type 2

The pes planus foot is very familiar to me as I was born with a pes planus third degree deformity. However, the CMT2 patient with a pes planus foot, has ligamentous laxity, in contrast to a pes planus foot that has a fixed or rigid deformity, such as my own foot. Fortunately for CMT patients, a flexible pes planus foot is easy to correct in comparison to a fixed or rigid pes planus. The pes planus is also known as a valgus deformity or where the foot goes into the

The pes planus foot, or more commonly known as the flat foot.
position of eversion. Most CMT patients will find it interesting to learn that a large percentage of the general population (who do not have CMT), suffer from pes planus feet. A major distinction between CMT patients and other patients who have pes planus, is that with CMT there is a foot drop or peroneal neuropathy, where the foot does not dorsiflex due to a weakness of the anterior tibialis muscle.

The anterior tibialis muscle is a large muscle on the front of your leg which dorsiflexes or lifts your toes up. With a pes planus foot the calcaneus is usually in a valgus position and the forefoot abducts (points outward). Ideally we want to do the reverse, adduct the forefoot, elevate the arch out of the pes planus position, and maintain that new corrected alignment with stability. If this is done properly it will reduce fatigue, pain, and allow you to increase your walking time. I stress that silicone is critical when doing this kind of correction.

As a sufferer from a pes planus birth defect, I have a lifetime of experience dealing with it. If I see you here in my office as a patient I would be glad to show you my foot, the carbon graphite device that I use to correct it, and can tell you what to expect. When I first incorporated my silicone correction system, I was the first patient to test it out. After using this for two to three months I realized the benefits and then started incorporating it into my new Helios™ Orthosis. I now have many patients using the silicone and they can tell you of its benefits.

Pes planus, or pes valgo planus, is a deformity producing a severe flat foot. This deformity mostly takes place at one particular joint, which is the talocalcaneal articulation. When there is a valgus deformity at this joint, there are usually three separate components that are put into effect:
1. The calcaneus has a valgus position.
2. The head of the talus angulates downward.
3. In relation to the hindfoot, the forefoot is totally abducted.

In addition, with this deformity the achilles tendon is normally pulled laterally. This is because of the outward rotation of the calcaneus. The outward rotation of the calcaneus displaces the line of pull of the achilles tendon. The primary muscles that plays a role in this is the gastrocnemius and soleus. The gastrocnemius and soleus muscles are the principal plantarflexors of the foot. Corrective bracing that takes place especially in the footplate of an orthosis can realign the joints, elevate the head of the talus and put the calcaneus back into its appropriate position. In time this will ultimately reduce the deviated line of pull of the muscle tendons and slowly let the muscles get back to their normal line of progression. This is assuming that there is no current permanent damage.

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DEFORMITY

What is deformity?
There are two categories of deformity:

1. The fixed deformity
Fixed deformities are also known as contractures. They are essentially rigid malalignments of joints. They can be a result of prolonged malalignment of joints which prevent the normal range of motion of that joint. Management for fixed deformity is quite difficult orthotically. Any kind of prevention of further deformity can be controlled with the proper orthotic system using the proper corrective force systems. Sometimes over long periods of time, orthoses can loosen up fixed deformities to a degree.

2. The dynamic deformity
The dynamic deformity consists of a non-fixed malalignment of the joints. This is the result of an imbalance of the muscle's tendonous pull. This is the category that most people with CMT fall under. Most of the time this can be easily corrected with the proper molding, mold rectification, and an appropriate carbon graphite device to maintain corrected joint alignment.

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BALANCE AND STABILITY

Whenever I receive e-mails or phone calls from CMT'ers, usually someone says "my balance is getting worse", or "will these braces help with my balance". Yes, they do help restore balance. They do this by correcting and stabilizing the deviations in joint alignment. But how is balance achieved? It is achieved through forces that stabilize segments of the body. What is stability in bracing? Stability: the broader the supporting area…the greater the stability becomes. Greater stability equals
greater balance. Through careful mechanical design of the orthosis, stability is achieved by two essential things: 1) the alignment of the orthosis, 2) the mechanical design of the footplate (the aspect that you bear weight on).

Designing the orthosis with stability brings your center of gravity to a more normal position statically (standing). This directly translates to better balance while walking. In order to maintain balance in standing and walking, the body's center of gravity needs to be in the appropriate location. These laws of physics apply to all things that require stability in remaining upright (including animals, buildings, bridges, etc).

Through proper brace design and reduction of gait deviations, better balance and stability is attainable for you.

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CORRECTION vs. OVERCORRECTION

With CMT, we want to correct your foot as much as possible. What does this mean? This means within the tolerances that meet acceptable standards. We do not want to correct your foot beyond what your body can tolerate. As practitioners, we must realize our limits and your limits as well. We will work with you to properly design your orthosis, so that you can wear it comfortably with maximal correction. Fortunately, silicone allows greater tolerance to correction and greater comfort.

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GOALS FOR CMT

1. To prevent any further deformity.
2. Correction of any deformity already present.
3. To improve limb function.

At the very least the primary goal of any orthosis is to prevent any further deformity. Once this is done new alignment can be put in place and better balance develops as a result. If you can take care of number one, and in addition take care of numbers two and three, and put all three equations together: the patient will experience improved alignment which is an improved structural outcome. This equals enhanced balance and usually results in an increased velocity or walking speed.

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DIAGNOSTIC FITTING

After your initial evaluation at Ortho Rehab Designs your lower limbs will be custom molded. Then a plaster mold is made of your limbs, and then mold rectification takes place. This brings us to the diagnostic stage of your visit. Once the mold is properly rectified with specific measurements and data from your videotape, a diagnostic orthosis is then made. The diagnostic orthosis serves as a fitting tool. From this we get back important information on how to make your final carbon graphite orthosis. The diagnostic orthosis helps us determine:
1. Your fit.
2. The proper structural alignment of your limb and joints.
3. Your comfort.

We will work with you in the diagnostic orthosis for approximately one day. Once we have determined that the fit, alignment, and comfort are all in check, we will then go to final fabrication of your carbon graphite Dynamic Response Orthosis. The diagnostic serves as a prototype to ensure a proper fitting final device.

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CREATING CORRECTIVE ENERGY

When a person's joints are malaligned, especially when wearing an orthosis, it fatigues the whole body and causes an increased oxygen consumption. In effect, what this means is that the person is losing energy while they ambulate. This is the worst possible thing that could happen to a brace wearer, as losing energy creates greater fatigue and in addition can cause further deformity as the body tries to compensate for this.

For example: when a foot is derotated, and the knee is taken out of hyperextension, we get corrected alignment. This corrected alignment linked with a proper stabilizing fit that uses corrective three-point pressure systems, will allow the patient to maintain proper alignment and have a much improved gait. Through proper correction the person is less fatigued and has greater endurance while walking in their orthosis, and with the addition of a dynamic release brace, gets more energy from the entire process.

With the proper corrective bracing we get increased energy return.

This is what the term "Creating Corrective Energy" means. I started using this term when I learned how much energy could be returned to a brace wearer, once the proper corrections were linked with a Dynamic Release Orthosis. When a brace user is not in proper alignment or does not have a proper fit, or proper three point pressure systems incorporated, that person will lose energy as they walk. Our goal is to produce energy, energy that corrects and gives back to the wearer. This energy also increases velocity which in turn gives better balance and stability.

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TESTIMONIALS


CMT PATIENT ANSWERS QUESTIONS ABOUT BRACING RESULTS
March 2003
South Carolina

Hello,

Thanks for your e-mail. My experience with Mitch was so positive that I'd gladly respond to your request for more information:

Q. Which Helios brace to you wear?
A. I wear the double Helios style.

Q. Do you wear one or two braces?
A. One on each leg.

Q. The how well do you walk with the braces?
A. The best I have ever walked in my life. No question about it. I was diagnosed at age 20. Discovered these braces at age 32. I had so many bad habits created in my gait. These braces, along with some discipline to remember to straighten my knees when I walked, changed my gait forever. When I walk now, it is fluid, and you would not suspect that I have CMT. In fact, to give you an even more compelling argument, I am now 34 and 7 1/2 months pregnant. I was very nervous that I would have problems with my legs and my stability during my pregnancy. With 9 weeks to go, I still have no problems and my balance is near-perfect. I think it has to do with a good diet and these Helios braces. Even more important than my gait improvements, my balance is near-perfect. I can stand still for hours at a time (when standing on both legs), not feeling the slightest bit clumsy or off center. (Remember again—even at 7 months pregnant, my balance hasn’t changed!).

Q. Has it improved your balance while standing still?
A. Please see above. The results are impressive when you are used to always having to hold onto something.

Q. Do you need to use a cane?
A. Nope!

Q. Did your medical insurance pay for the braces?
A. Yes. Check out your benefits to see if they cover this type of durable medical equipment and be persistent. I recommend that you get everything preapproved, if possible. This doesn't (shouldn't take very long). Collecting after the fact is very difficult.

Q. How long have you worn the braces?
A. Going on two years in June.

Q. How long did you need to stay in Las Vegas to be fitted?
A. 1 week -- there is so much to do! It was like a mini vacation for me -- even being alone.

Last but not least, Mitch is very responsive. I live on the East Coast and he responds very quickly (within 24 hours of my calls if not sooner). The stellar customer service you receive from both Mitch and his assistant Michelle make your investment that much more worthwhile. Any potential problems are addressed promptly. Michelle also has experience working with insurance companies. Although I had to file everything myself, she gave me very good advice throughout the process.

My bottom-line recommendation is: just do it! Good luck!

Sincerely,
E.H.
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November 22, 2003

Michael Meyer, Age: 58, CMT
The Helios Orthosis
New York, NY

To all those with CMT, who would welcome the ability to walk with a normal gate:

Over the past eight years, I have tried various types of braces. I have found this to be a thoroughly exasperating experience. Physicians lacked knowledge in bracing and orthotists did not understand the needs of a person with CMT. Also, they lacked the knowledge of innovative approaches and offered few options (the ‘One Brace Fits All’ concept).

I was searching for a brace that would act as a support for the muscles that were reduced in their strength and function, and additionally allow the muscle groups that were still working to perform.

Also, I wanted a brace that was comfortable, would enable me to walk with a normal gate, offer stability while standing or walking, and support proper posture.

If you have ever searched for a brace, you probably find my desires equivalent to ‘The Impossible Dream'.

My search is over thanks to Mitchell Warner.

Mitchell Warner at Ortho Rehab Designs has developed and trademarked braces specifically for CMT. He possesses the knowledge and experience to evaluate and recommend solutions based on an individual’s needs.

I spent five great days in Las Vegas, NV, receiving the ultimate in courteous and professional care.

I am now able to out pace a majority of pedestrians in Manhattan. The Helios Orthosis enables me to stand and walk with stability. I can navigate uneven surfaces, and climb and transcend slopes. Achieving all this with absolute comfort and proper body alignment.

Thanks again Mitch.

Michael Meyer

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LINKS

For more clinical information about CMT, consult with your physician, or visit any of these valuable links:

Charcot-Marie-Tooth Association
www.charcot-marie-tooth.org

Muscular Dystrophy Association
www.mdausa.org/disease/cmt.html
www.mdausa.org/publications/fa-cmt.html

Duke University Medical Center www.chg.duke.edu/patients/cmtd.html

For questions about CMT, you can e-mail the staff at CMT...today magazine:
cmt.today@sympatico.ca
cmt.info@bellnet.ca

Group discussion
www.yahoogroups.com/group/cmtus
www.yahoogroups.com/group/cmt-support

References:
(1) New York University Medical Center, Lower-Limb Orthotics, 1986
(2) (3) Robert B. Salter, M.D., Textbook of Disorders and Injuries of the
Musculoskeletal System, 1984
(4) Rene Cailliet, M.D., Foot and Ankle Pain, 1985


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"I am now able to out pace a majority of pedestrians in Manhattan."

-Mike, New York City

Ortho Rehab Designs is a proud supporter of The Hereditary Neuropathy Foundation, an organization dedicated to raising awareness and improving the lives of people with Charcot-Marie-Tooth and other debilitating hereditary neuropathies.



Ortho Rehab Designs
2578 Belcastro St.
Suite #101
Las Vegas, Nevada 89117

Tel: 702.388.9909
Toll Free: 888.696.9909
Fax: 702-388-9929

ordesignslv7@yahoo.com