Re: NYU and the Ponseti method (the rest of the story)

[Guest guest]

And now for parts of the rest of the story. [i don't know all of

the rest of the story, just parts of it]. These are the things that

I remember from conversations back in 1999 that I didn't really put

all together until a year or so later. I am sure that there are

many other parts of the story of why doctors at NYU changed over to

the Ponseti method in 1999 and early 2000 that I am not aware of.

When our son was born in March 1999, there were only about 10-

15 doctors who used the Ponseti method and most of them were in

Iowa. When our son was 2 weeks of age, my wife accidently found Dr.

Ponseti's web site on the internet. During the following 4 weeks we

did as much research as we could on different methods of treatment

for clubfoot. During that time, Dr. Ponseti suggested we call Dr.

Herzenberg in land, since he had recently changed over to

the Ponseti method.

I called Dr. Herzenberg and left a message for him at his office.

He called me back from his home on a Saturday evening and I asked

him every question I could think of about clubfoot treatment and the

Ponseti method. He explained his experience in changing over to the

Ponseti method after 10 prior years of using a method that was 90%

surgical. About that same time, he provided a review of Dr.

Ponseti's book at & Noble.com and Amazon.com

http://www.amazon.com/exec/obidos/ASIN/0192627651/upcapstoliclife/103

-/002-4532227-8757640

During our conversation, Dr. Herzenberg mentioned that he had some

other parents that year (early 1999) who were from Upstate New York

who had found out about the Ponseti method on the internet, called

Dr. Ponseti, and were referred to go him in Baltimore. The parents

had previous casting treatment elsewhere and surgery was being

recommended. They had also gotten treatment opinions from doctors

at NYU. Dr. Herzenberg told them he would be glad to treat their

child and after correction encouraged them to go back to show Dr.

Lehman at NYU how the Ponseti method had worked. I assume (but

don't know for sure) that those parents ultimately took their child

back to Dr. Lehman to show him how the Ponseti method had worked.

At that time, I didn't realize who Dr. Lehman at NYU was. During

that same month of April, 1999, I had acquired 3 clubfoot treatment

books; Dr. Ponseti's and two others that each had chapters on

clubfoot surgery after relapsing by a Dr. Wallace Lehman of NYU.

Apparently in the Fall of 1999, Dr. Wallace Lehman made a trip to

Iowa to meet Dr. Ponseti and see for himself how the Ponseti method

worked. I do not know if part of the reason he went was because of

the parents who had gone to see Dr. Herzenberg. Dr. Lehman was

impressed with the method and went back to NYU and told other

doctors there about what he had seen in Iowa.

In February of 2000, Dr. Feldman, the chief of Pediatric

Orthopedic surgery at NYU made a trip to the U of Iowa to see for

himself how the Ponseti method worked. Interestingly, a parent from

the internet groups was there at the U of Iowa for the casting of

their own child and reported on her meeting Dr. Feldman. Her

message was posted on Parentsplace which now doesn't have archive

files that I can access anymore. Her message at the Parentsplace

site had said, " I can not believe what a difference there is in

Henry's feet. In 10 days there was more change than in 14 weeks of

casting with Henry's first doctor. His feet are pointed out in

front now. The new casts are pointed out a little. He said we will

need 2 more casts, 1 this Friday and another next Wednesday. Henry

is 6 months old and Dr. Ponseti said his feet were severe club

feet. We had been told by 3 other doctors that he would require

surgery. The whole experience with Dr.Ponseti is very gentle. While

we were there today there were 2 doctors from NYU there learning

from him, one of whom is the Chief of Pediatric Orthopedic Surgery.

He was so excited about using this great doctor's method. If any of

you feel this would be right for your child, you should try it. It

is truly unbelievable. "

Her messsage here at nosurgery4clubfoot can be seen at

http://health.groups.yahoo.com/group/nosurgery4clubfoot/message/301

Because of Lauri's post about her experience in Iowa with a doctor

from NYU, we asked Dr. Ponseti about it when we saw him at the

Chidren's Hospital of L.A. for a check-up during his visit there.

On April 9, 2000; we reported on a conversation at

http://health.groups.yahoo.com/group/nosurgery4clubfoot/message/1172

In a few days, Lori S. had e-mailed Dr. Feldman for information on

how they were doing in their use of the Ponseti method. Lori

received a response and sent this e-mail on April 12, 2000.

Subject: An update on the NYU doctors

I just got an email from Dr. Feldman at NYU updating us on what they

are doing out there with the Ponseti Method. Dr. Feldman

said, " Since meeting with Dr. Ponseti: Dr. Lehman, Dr. Van Bosse and

myself have engaged full steam into the Ponseti method. We have 25

feet currently undergoing treatment and so far have had no failures.

Because we have come to the game recently we have started with

children of ages from 4 weeks to 14 months. Although the later

stages are more challenging, I have been quite satisfied with the

results to date. I have been strictly adhering to Dr. Ponseti's

recommendations as I do not feel changes are warranted. After

discussing this with Dr. Deitz in Iowa, I believe changes in the

method are foolhardy.

Being the Chief of Pediatric Orthopedics in a large university, I

have the opportunity to teach and inform physiatrists and surgeons

of this method. I am also arranging an instructional course lecture

at the AAOS (American Academy of Orthopedic Surgeons) meeting.

Along with Dr. Deitz and Herzenberg (from land) we hope to make

this method more universally accepted. I don't fully understand the

reservations people have to trying the method, although for years, I

too was a sceptic.

Please feel free to use NYU/HJD and our service as a resource for

your group. I would be happy to answer any questions you may have.

Also you may contact my nurse, Ella Pasquareillo ... She can

forward patient information that we are developing and a recent

letter that went to Pediatricians in our area.

Continue the good work and thank you for your interest. (my direct

email is david.feldman@m...)

Sincerely,

S. Feldman, M.D.

Dr. Feldman's nurse will be forwarding ... a copy of a recent letter

that went out to Pediatricians... Isn't this GREAT!!!

Lori Stime

Research Associate in:

Child Development and Human Relations

Annika's Clubfeet Photos

http://albums.photopoint.com/j/AlbumIndex?u=76323&a=601182

Then in the next few weeks, Lori got a copy of the letter that NYU

sent out to New York Area Pediatricians about their new conversion

to the Ponseti " non-surgical " method of treatment for clubfoot.

This is an e-mail copy of a letter sent to New York Area

Pediatricians by

Dr. Feldman

Chief of Pediatric Orthopaedic Surgery

Center for Children

NYU's Hospital for Joint Diseases

301 E. 17th Street

New York, New York

March 3, 2000

Dear Dr.:

The treatment of the clubfoot has been debated for nearly a

century. There have been advocates of conservative treatment as

well as proponents of early surgery. Numerous anatomic and outcome

studies have been performed in an attempt to answer the many

questions associated with clubfoot etiology and treatment. There is

a great deal of conflicting information furnished by individual

surgeons as well as in the scientific literature, however, I believe

this debate will be ending in the near future.

Dr. Ignacio Ponseti, professor emeritus of orthopedic surgery at the

University of Iowa, has dedicated a portion of his life's work to

the study of a number of pediatric ailments including the clubfoot.

If treated correctly, in the first few months of life, Dr. Ponseti

has stated that one almost never has to do the standard soft tissue

releases and joint surgery now done for clubfeet. There is a casting

and manipulative technique with minimal surgical intervention that

results in a uniformly good result. If Dr. Ponseti initiated

treatment by three months of age, he has never operated on the

joints and ligaments of the clubfoot. This is astounding.

The treatment requires 5 to 6 weeks of casting followed by an office

tenotomy (no anesthesia) of the Achilles tendon, bracing for a few

months followed by night time bracing for two to three years. The

bracing component is difficult but an essential part of treatment.

Approximately 25% of the feet treated in this manner will require a

tendon transfer surgery at the age of 3. This surgery is minimal

compared to the typical surgery done currently.

The University of Iowa, spearheaded by the work of Dr. Stuart

Weinstein and Dr. Fred Deitz, has the longest and most extensive

outcome studies of pediatric orthopedic conditions. They have 40-

year follow-up of clubfeet treated by this method and have published

positive results. ... There has been resistance to accepting this

method due to our training and pre-conceived notions of how to cast

and treat clubfeet in infancy. NOT all casting is equal.

I recently returned from a trip to Iowa where I examined many

patients in various stages of treatment and witnessed the long

follow-up available. The results were nothing short of miraculous.

Dr. Wallace Lehman, chief emeritus of pediatric orthopedic surgery

at Hospital for Joint Diseases and a world renown expert on the

clubfoot, is spearheading this initiative after he too visited Iowa

and experienced these results first hand. Dr. Lehman will now be

directing the Center for the Treatment of Childhood Foot Deformity

at the Center for Children. Along with the pediatric orthopedic

surgeons and physical and occupational therapists, this center will

continue to utilize tried and true methods and will evaluate new

methods of treating childhood foot deformity. Dr. Ponseti's method

will be the primary, but not sole, treatment modality utilized for

clubfeet.

I believe the pediatric orthopedic community has ignored an

important, if not revolutionary, technique in treating clubfeet.

This is now changing. We must now look to the future to insure the

ideal outcome for these children.

I would be happy to answer any questions you may have regarding this

technique or even demonstrate the technique and its results. Thank

you.

Sincerely,

S. Feldman, M.D.

A copy of this letter has been posted in the files section of the

nosurgery4clubfoot parents support site for 4 years.

So these were some of the things that were happening on the internet

in relation to NYU's changing over to the Ponseti method in 1999 and

early 2000. And so now you know parts of the rest of the story.

Which brings us back to what happened after these messages in 1999

and 2000. Since then Dr. Wallace Lehman, Dr. Feldman and the

rest of the doctors at NYU have been tremendous advocates of the

Ponseti method both to their patients as well as to other doctors.

Which brings us back to the papers, studies, etc. that they have

done since early 2000.

In September 2000, Dr. Lehman was at the U of Iowa for a Ponseti

method training seminar as one of the instructors.

http://health.groups.yahoo.com/group/nosurgery4clubfoot/message/3118

Also in September of 2000, the Cotton Family began treatment of

their child with the Ponseti method at NYU with Dr. Feldman. They

left a great photo record of their experience.

http://hometown.aol.com/vc11/

Subsequently, in April 2001, Dr. Lehman, Dr. Feldman, Dr. Van Bosse,

Dr. Scher and other physicians at the Mount Sinai NYU Hospital for

Joint Diseases named their new clubfoot treatment center in honor of

Dr. Ponseti. On Sept. 28, 2001, the University of Iowa dedicated the

clinic Ponseti directs as the Ponseti Clubfoot Treatment Center.

http://www.press-citizen.com/progress2002/health/ponseti.htm

At the 2002 AAOS Convention, Dr. Lehman, Dr. Feldman, Dr. Van Bosse,

Dr. Scher and others presented a paper on the first 50 children that

they treated with the Ponseti method.

http://www.aaos.org/wordhtml/anmt2002/sciprog/051.htm

Abstract of an article by Dr. Lehman, Dr. Feldman, Dr. Scher, et al,

titled, " A method for the early evaluation of the Ponseti (Iowa)

technique for the treatment of idiopathic clubfoot, " published in

the Journal of Pediatric Orthopedics, March 2003.

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?

cmd=Retrieve&db=PubMed&list_uids=12584499&dopt=Abstract

I have now met Dr. Lehman about 5-6 times and Dr. Feldman 2-3 times

at different conventions and meetings on clubfoot treatment. We

should all be grateful to them for the efforts that they have made

to provide the Ponseti method to their own patients and in providing

scientific papers, training and encouragement to other doctors in

the Ponseti method.

and (3-17-99)

> For those of you who are relatively new to our group, I thought

that

> I would provide an interesting story from the experiences of

parents

> on the internet over the past 5 years as doctors have changed over

> to the Ponseti method.

>

> From 1980 to the mid 1990's, Dr. Wallace Lehman of NYU's Hospital

> for Joint Surgery had published a book, chapters in books and a

> number of scientific articles on clubfoot surgery. He is

recognized

> as a leading expert on the treatment of clubfoot and especially

what

> to do in secondary surgeries for clubfoot.

> http://www.clubfoothjd.com/biblio.asp

>

> In 1999 and early 2000, something happened to change Dr. Lehmans,

> Dr. Feldmans and Dr. Scher's initial approach to the treatment of

> clubfoot.

>

> In September 2000, Dr. Lehman was at the U of Iowa for a Ponseti

> method training seminar as one of the instructors.

>

http://health.groups.yahoo.com/group/nosurgery4clubfoot/message/3118

>

> Also in September of 2000, the Cotton Family began treatment of

> their child with the Ponseti method at NYU with Dr. Feldman. They

> left a great photo record of their experience.

> http://hometown.aol.com/vc11/

>

> Subsequently, in April 2001, Dr. Lehman, Dr. Feldman, Dr. Scher

and

> other physicians at the Mount Sinai NYU Hospital for Joint

Diseases

> named their new clubfoot treatment center in honor of Dr. Ponseti.

> On Sept. 28, 2001, the University of Iowa dedicated the clinic

> Ponseti directs as the Ponseti Clubfoot Treatment Center.

> http://www.press-citizen.com/progress2002/health/ponseti.htm

>

> At the 2002 AAOS Convention, Dr. Lehman, Dr. Feldman, Dr. Scher

and

> others presented a paper on the first 50 children that they

treated

> with the Ponseti method.

> http://www.aaos.org/wordhtml/anmt2002/sciprog/051.htm

>

> Abstract of an article by Dr. Lehman, Dr. Feldman, Dr. Scher, et

al,

> titled, " A method for the early evaluation of the Ponseti (Iowa)

> technique for the treatment of idiopathic clubfoot, " published in

> the Journal of Pediatric Orthopedics, March 2003.

> http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?

> cmd=Retrieve&db=PubMed&list_uids=12584499&dopt=Abstract

>

> As to what happened in 1999 and early 2000 to help change NYU's

> initial approach to the treatment of clubfoot is the rest of the

> story.

>

> and (3-17-99)