All That Is Positive: Dr. Glenn Pffefer speaks on Half the Battle for Awarenes

[Guest guest]

Half The Battle by Glenn B. Pfeffer, MD

Last week a 42 year old man came to the Charcot-Marie Tooth Clinic at

Cedars-Sinai. He had driven over 300 miles for the appointment. " I have come

here, " he explained, " to understand what's wrong with me, and to see if there's

anything I can do about it. " He had surgery on his ankle tendons a year earlier

by a local surgeon, and was told that his recovery would be slow. When his ankle

weakened further after the operation a neurologist ultimately diagnosed him with

CMT.

Unfortunately, his surgeon had not understood the extent of his problem, and had

performed a procedure that was doomed to failure. " Don't worry, " I assured him,

" I can help you. " " That's what the other doctor said, " he replied.

I spoke with my patient for about an hour. I explained his condition to him, and

what options he had for treatment. We discussed the possibilities of shoe

modification, special braces and surgical correction. I encouraged him to

participate in a specialized physical therapy program that focuses on the unique

needs of a person with CMT. He asked me about current CMT research.

When he left, I asked him what he was going to do. " I'm not sure, " he said, " but

I understand my options, and that's half the battle. "

CMT is one of the most commonly overlooked and misdiagnosed problems in

medicine. Most patients experience symptoms that remain undiagnosed for years,

if not decades. Isolation from one's peers and a distrust of the medical

community often occur. Many people stop turning to doctors for help; and when

they do, they are often sort changed, like my 42 year old patient.

Perhaps the most important increased awareness for CMT needs to occur among

physicians and other caregivers. Once patients with CMT understand their

condition and what can be done for them, half the battle is won.

At Cedars-Sinai we have a team of caregivers who are highly specialized in CMT.

As an orthopaedic foot and ankle specialist

I typically take care of patients who have failed conservative care, including

bracing and our CMT physical therapy program. When needed, surgery can transform

an unbalanced and deformed foot into one with a remarkable improvement in

function. Even if a patient decides not to have surgery, he or she will leave

our comprehensive care better prepared to deal with the second half of the

battle that lies ahead.

Glenn B. Pfeffer, MD can be reached at Pfefferg@... He is currently

Director of the Foot and Ankle Center and Charcot-Marie-Tooth Clinic, at

Cedars-Sinai Medical Center in Los Angeles.

[Guest guest]

I must say, I have been the see this doctor, and it is kind of weird, but he

seems to think CMT stops at the belt line. He is not, at least in early 2008

when I saw him, interested in anything CMT that happens above the hips.

If you have problems with CNS symptoms or hand problems, or problems with neck,

mouth, chewing, and/or swallowing, Dr. Pfeffer isn't really interested, or so it

seemed to me.

This is just the feeling I walked away with, as I asked about hands and mouth

and other symptoms, and he referred me to another doctor at another Cedars Sinai

facility. It was really disconcerting.

On Sep 23, 2010, at 8:07 AM, gfijig wrote:

> Half The Battle by Glenn B. Pfeffer, MD

>

> Last week a 42 year old man came to the Charcot-Marie Tooth Clinic at

Cedars-Sinai. He had driven over 300 miles for the appointment. " I have come

here, " he explained, " to understand what's wrong with me, and to see if there's

anything I can do about it. " He had surgery on his ankle tendons a year earlier

by a local surgeon, and was told that his recovery would be slow. When his ankle

weakened further after the operation a neurologist ultimately diagnosed him with

CMT.

>

> Unfortunately, his surgeon had not understood the extent of his problem, and

had performed a procedure that was doomed to failure. " Don't worry, " I assured

him, " I can help you. " " That's what the other doctor said, " he replied.

>

> I spoke with my patient for about an hour. I explained his condition to him,

and what options he had for treatment. We discussed the possibilities of shoe

modification, special braces and surgical correction. I encouraged him to

participate in a specialized physical therapy program that focuses on the unique

needs of a person with CMT. He asked me about current CMT research.

>

> When he left, I asked him what he was going to do. " I'm not sure, " he said,

" but I understand my options, and that's half the battle. "

>

> CMT is one of the most commonly overlooked and misdiagnosed problems in

medicine. Most patients experience symptoms that remain undiagnosed for years,

if not decades. Isolation from one's peers and a distrust of the medical

community often occur. Many people stop turning to doctors for help; and when

they do, they are often sort changed, like my 42 year old patient.

>

> Perhaps the most important increased awareness for CMT needs to occur among

physicians and other caregivers. Once patients with CMT understand their

condition and what can be done for them, half the battle is won.

>

> At Cedars-Sinai we have a team of caregivers who are highly specialized in

CMT. As an orthopaedic foot and ankle specialist

> I typically take care of patients who have failed conservative care, including

bracing and our CMT physical therapy program. When needed, surgery can transform

an unbalanced and deformed foot into one with a remarkable improvement in

function. Even if a patient decides not to have surgery, he or she will leave

our comprehensive care better prepared to deal with the second half of the

battle that lies ahead.

>

> Glenn B. Pfeffer, MD can be reached at Pfefferg@... He is currently

Director of the Foot and Ankle Center and Charcot-Marie-Tooth Clinic, at

Cedars-Sinai Medical Center in Los Angeles.

>

>

[Guest guest]

,

Not true at all. I have met with him many times and throughout the years, he has

gained great knowledge and experience about what CMT is. But, remember he is

first and foremost a specialist/surgeon in ankle/feet problems. That is his area

of expertise.

Of course it is common sense that if you have hand, neck, swallowing issues,

that he would refer you to someone else. " At Cedars-Sinai we have a team who are

highly specialized in CMT " .

Gretchen

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