My Notes from the Ponseti Symposium in Iowa - Oct 7-8, 2005

October 20, 2005

On October 7-8, 2005, Allyson, (6 ½ years old) and I had the

opportunity to attend the Ponseti Method training symposium at the

University of Iowa. It was fun to see everyone there as there were

about 20 patients and their families that were there at different

times during the 2 days of meetings and the races.

I will try to provide some detail on the meetings and presentations

but please understand that I am a parent and not a doctor and am

giving my impressions of what was presented and it may not be

exactly what the doctors meant to say. Hopefully it will be close.

If anyone sees anything that is not accurate, please let me know and

I will try to correct it.

There were about 30 doctors there from 10 different countries.

Those that I knew included Dr. Dobbs from the St. Loius Shriners,

Dr. Penny from B.C., Canada, Dr. Naomi from the U.K.,

Dr. Mark Sinclair from Germany, Steve Mannion from the Malawi

Clubfoot project, a doctor from Finland who is aware of our parent

member Sanna Rekila, a doctor from Turkey who was studying with Dr.

Noonan at U of Wisconsin, Michiel and Marieke Steenbeek, of the

Uganda Clubfoot project. There were a number of others who were

there to learn more about the use of the Ponseti method. It

appeared that most, if not all of them were already using it in

their own practices. Also, Dr. Ponseti, Dr. Dietz and Dr. Morcuende

from Iowa. A day earlier, they were discussing the efforts to take

the Ponseti method to developing nations. There are now Ponseti

clubfoot projects in Uganda, Malawi, Ghana, Nepal, China and India.

The U of Iowa is also involved with training projects in many

Central and South American countries.

It was great to have Boston and NY Marathon winner Alberto Salazar

there as the honorary chairman of the Ponseti clubfoot races held on

Saturday after the meetings. A brief biography of Alberto Salazar

can be found at

http://www.distancerunning.com/inductees/2000/salazar.html

My guess is that there were probably 20 Ponseti method patients, and

their families, there ranging from infants on up to two gentlemen

who were 49 years of age.

The following is the outline of the 2 day meetings:

FRIDAY, OCTOBER 7, 2005

8:00am Registration. Continental breakfast available.

8:30 Welcome - Morcuende, MD

8:50 Stan previews the Ponseti Clubfoot Races

9:00 Dr. Buckwalter provides bio on Alberto Salazar and names him

Honorary Chair of the Second Annual Ponseti Clubfoot Races to be

held Saturday Afternoon.

8:45 " Kinematics of the Subtalar Joint:

Why the Ponseti Method Works "

--Norgrove Penny, MD

9:30 " Pathology of Congenital Colubfoot:

Errors in the Treatment

--Ignacio Ponseti, MD

10:00 Break

10:15 Casting babies. Tenotomy, if possible.

12:15pm Lunch

1:15 " Technique Practice with Models and Instructors "

Instructors:

Frederick Dietz, MD, Morcuende, MD, PhD,

Norgrove Penny, MD, Dobbs, MD,

(Clinic C and Treatment Room)

3:00 Break

3:15 " The Atypical Clubfoot "

-- Morcuende, MD, PhD

3:30 " Brace Compliance with Ponseti Technique "

-- Dobbs, MD

3:45 " Recognition and Management of Relapse "

-- Morcuende, MD, PhD

4:00 " Short Term Results of Ponseti Technique vs Surgery "

--Frederick Dietz, MD

4:15 Group Questions and Discussion

5:00 Recess

6:30pm Dinner for Participants

**University Athletic Club

SATURDAY, OCTOBER 8, 2005

8:00am Continental breakfast

8:30 " Long Term Ponseti Technique Result "

--Frederick Dietz, MD

9:00 " Long Term Results of Posteromedial Release "

--Matt Dobbs, MD

9:30 " Worldwide Approach to Clubfoot Treatment "

--Norgrove Penny, MD

10:00 Coffee Break

10:15 Longer Term Follow-up Patient

Parent Testimonials

11:30 Debriefing. Final Discussion and Questions

12:00pm Adjourn

GUEST FACULTY

Norgrove Penny, MD

Associate Professor

University of British Columbia

Vancouver, Canada

Dobbs, MD

Assistant Professor

Shriners Hospital for Children

St. Louis, MO

UNIVERSITY OF IOWA CARVER COLLEGE OF MEDICINE FACULTY

DEPARTMENT OF ORTHOPAEDICS AND REHABILITATION

Stuart Weinstein, MD

Professor

Ignacio Ponseti, MD

Professor Emeritus

Morcuende, MD, PhD.

Assistant Professor

Frederick Dietz, MD

Professor

A copy of the brochure for the meeting can be seen at

http://www.medicine.uiowa.edu/cme/pdfs/ponseti%202005.pdf

Here is some information on each of the presentations. I didn't

keep notes except on Matt Dobbs' presentation on the long term

outcomes of posteriomedial surgical treatment and I missed a couple

of talks. I hope that my information is accurate in what each

presented.

8:45 " Kinematics of the Subtalar Joint:

Why the Ponseti Method Works "

--Norgrove Penny, MD

Dr. Penny pointed out that Dr. Ponseti has stated for many years and

repeats in his book that his method of manipulation and casting was

based on a proper " understanding of the functional anatomy of the

normal foot as well as of the clubfoot. Without this understanding,

it is impossible to alter the forces that caused the deformity and

apply the proper corrective manipulations and retaining casts. "

Dr. Ponseti has also said that the Kite method attempted to " correct

each component of the deformity separately instead of

simultaneously " which is not how the foot works and is why the Kite

method doesn't work.

In Dr. Ponseti's book it states, " All of the components of the

clubfoot deformity have to be corrected simultaneously with the

exception of the equinus which should be corrected last. " Quotes

from Dr. Ponseti are from his 1996 book " Congential Clubfoot,

Fundamentals of Treatment. " . A copy of the introduction to Dr.

Ponseti's book with the above quotes and his basic explanation of

the historical development of his method can be found in the files

section of the nosurgery4clubfoot group site under reference

information. You have to be a member of this group to access the

files sections but it's free.

http://health.groups.yahoo.com/group/nosurgery4clubfoot/files/Referen

ce%20Information

Dr. Penny showed in detail how the ankle joint functions and tied it

into the reasons why the Ponseti method works. He also showed why

the Kite Method of casting (which is what most other casting methods

are based on doesn't work).

He said that the motions of the ankle joint are very complex and

don't fit into 2 dimensional concepts of motion. The motions of the

ankle joint are 3 dimensional. He likened it to the motions of a

boat on the ocean. The motions of a boat include yaw, pitch and

roll which are similar to the 3 dimensions of motion inside the

ankle joint. A web site that shows the motions of a boat can be seen

at http://www.boatsafe.com/nauticalknowhow/captpat1.htm

Dr. Penny showed how the Kite method tried to fix each of the

problems of the foot in one plane at a time which doesn't work while

the Ponseti method addresses all of the 3 dimensional motions of the

foot simultaneously which is why it works.

It was a very good visual presentation of the motions inside the

foot that make the Ponseti method work

9:30 " Pathology of Congenital Clubfoot:

Errors in the Treatment

--Ignacio Ponseti, MD

Dr. Ponseti explained what is understood about when and how a

clubfoot develops in an otherwise normal foot at about 14 weeks of

gestation. He explained the complex details which are essentially

chapter 2 of his book.

Casting babies. Tenotomy. Many children were presented to show

various stages of correction.

3:15 " The Atypical Clubfoot "

-- Morcuende, MD, PhD

I am sorry to say that I missed most of this presentation. I

believe that this was concerning 18 children who had what they

described as Atypical Clubfoot. But luckily, this was also

presented at the 2005 AAOS Convention and an abstract of the paper

can be seen at http://www.aaos.org/wordhtml/anmt2005/sciprog/270.htm

3:30 " Brace Compliance with Ponseti Technique "

-- Dobbs, MD

Dr. Dobbs presented information on issues relating to brace

compliance. He also presented a number of new shoes and bar designs

that they have been using to try to make brace compliance better and

therefore reduce the risk of relapsing. He said that they have had

some good success in reducing brace compliance problems and also

reducing relapsing.

3:45 " Recognition and Management of Relapse "

-- Morcuende, MD, PhD

Dr. Morcuende went through what to watch for in relapsing and what

to do to avoid relapses as well as treat them should they occur. A

lot of his presentation was similar to the information in Dr.

Ponseti's 2001 article on relapsing which can be seen at

http://health.groups.yahoo.com/group/nosurgery4clubfoot/message/13223

and

http://health.groups.yahoo.com/group/nosurgery4clubfoot/message/29612

4:00 " Short Term Results of Ponseti Technique vs Surgery "

--Frederick Dietz, MD

Dr. Dietz presented information about the children that he treated

during the 1980's while Dr. Ponseti was retired. At that point in

time, they had felt that the Ponseti method could only be used on

children prior to about 6 months of age. So when older children had

transferred to Iowa in the 1980's who were older than 6 months,

usually Dr. Dietz did the surgery for them. It wasn't until Dr.

Ponseti came out of retirement in the early 1990's that they began

to try to extend the timeframe for which the Ponseti method could be

used. I did not write down the details of this presentation.

SATURDAY, OCTOBER 8, 2005

8:30 " Long Term Ponseti Technique Result "

--Frederick Dietz, MD

Dr. Dietz presented information mostly from the 1995 study. " The

Treatment of Idiopathic Clubfoot, a Thirty Year Follow Up Note " .

This study was published in the Journal of Bone and Joint Surgery in

1995 as a 30 year follow-up on the patients from Dr. Ponseti's

initia1 1963 study of children treated between 1948 and 1956. They

are in the process of finishing the 40 year follow-up studies on

those same patients that will be published in the next year or so.

The results of the 30 year study had been that in the 1995

review " of our patients treated 25 to 42 years ago, it was found

that although the treated clubfeet were less supple than the normal

foot, there were no significant difference in function or

performance compared to a population of a similar age born with

normal feet. "

This presentation went through how they set up the standards of the

1995 study and the specifics of the results of treatment. Dr. Dietz

mentioned that he did not think that this population of patients

treated between 1948 and 1956 would be their best outcomes compared

to children treated in the more recent past. He said that the

reason for this is that in the 50's Dr. Ponseti had only taken the

children's feet out about 50 degrees abduction and the time in the

brace and compliance with it were not emphasized as much as now

because the method was just being developed. As a result, the

1950's era children had a much greater rate of relapsing and need

for the Anterior Tibial Tendon Transfer.

He explained that in 1995, no one else had done a long term outcome

study out to a minimum of 25 years and so they had to determine the

kinds of things that they were going to study and look for to

determine what should be considered excellent, good, fair, poor etc

and also figure out a way to compare to a population of normal feet

as a constant.

The system they established in 1995 has now been used by a few other

groups as a model of methods to study outcomes. One of the things

that the U of Iowa has been known for worldwide in many medical

specialties is the longest long term outcome studies of different

kinds of treatment methods for all kinds of medical issues.

As far at the upcoming 40 year follow-up study, I basically remember

that they didn't find much in the way of differences from the 30

year study to the 40 year study on now minimum 35 year to 52 year

old outcomes.

9:00 " Long Term Results of Posteriomedial Release "

--Matt Dobbs, MD

This is I think one of the most important studies to be presented at

this meeting. Dr. Dobbs at the St. Louis Shriners Hospital did a

study of their patients who had surgical posteriomedial releases and

were a minimum of 25 years of age. So this study looked at a group

of patients similar in age to those studied in Dr. Dietz's 30 year

follow-up study that was done in 1995, but with the difference being

that they had surgical treatment instead of Ponseti method

treatment. Dr. Dobbs used much of the same study criterion and

rating scales from Dr. Ponseti's 1980 study to try to show a

comparison of treatment methods. In Dr. Ponseti's 1980 study, the

ages were from 10 to 27 years with a mean of 18.8 years.

Dr. Dobbs and others said one of the problems in doing this type of

study was that most ped ortho's patients typically are only seen by

the original doctor until their teens. Also, you have to have a

surgeon to agree to do the follow up on their surgically treated

patients. He has also had a number of other doctors argue that the

surgery done 25 years ago is different than the ones being done

now. Dr. Dobbs said that the surgeon who did the surgeries in the

study was actually a bit ahead of his time in using circumferential

incisions as a part of the Turco method of posteriomedial release

and maybe 5 years ahead of what most others were doing. Dr. Turco

was from the New England area and had developed a new method of

combining the posterior and medial releases called the Turco method.

After 4 years of watching Dr. Dobbs introduce the Ponseti method to

the St. Louis Shriners, the older surgeon at Shriners felt that it

was important that the study be done and agreed to allow the follow-

up to be done on his patients.

Dr. Dobbs said that the study took 4 years to complete at a cost of

$100,000. During the period from 1976 to 1979, they treated 79

patients for congential clubfoot. For different reasons, 17 of the

79 patients were excluded and 62 patients were invited to

participate in the study. 45 of the 62 patients agreed to

participate in the study. 31 were boys and 14 were girls, 28 were

bilateral. They all had a Turco incision of complete soft tissue

release (a posterio-medial release).

The study used the Ponseti 100 point index from Dr. Ponseti's 1980

study. They also had a foot function index and used what is called

the SF-36 questionaire. They did clinical examinations that

included studies of what may have been done in subsequent surgeries,

questions on pain and a physical exam. They also did x-ray studies.

The results of the study are as follows: The ages of patients at

the time of the study was a mean of 30 years with a range of 25 to

32 years. Age at the time of first surgery was mean of 9 months

with a range of 6 to 15 months. 39 of 45 patients had subsequent

surgeries. The mean number of surgeries was 3.8 with a range of ±

1.52 surgeries.

The Ponseti index mean rating of Dr. Dobbs study on surgically

treated feet was 65.3 with a range of 30 to 82 points. The Ponseti

index rating of Ponseti method treated children in Dr. Ponseti's

1980 study was 87.5 with a standard deviation of 11.7 points and a

range of from 50 to 100 points. I do not remember if Dr. Dietz had

indicated a Ponseti index rating for the 1995 study and it is not

stated that I can find in Dr. Ponseti's book. The rating system for

functional results was designed with 100 points indicating a normal

foot. The factors included a maximum score of 30 points for

questions related to amount of pain with more points meaning no pain

and less points more pain related issues, 20 points for questions

related to level of activity and 20 points for questions related to

patient satisfaction; and 10 points each for motion of the ankle and

foot, and position of the heel during stance and gait. The Ponseti

index classified scores at excellent from 90 to 100, good from 80 to

89, fair from 70 to 79, poor for less than 70 points.

In Dr. Dobbs Surgical treatment study, 68% reported foot pain during

normal activities.

In the Foot Function Index, 67% had tenderness to touch, 42% limped

while walking, 56% had moderate to severe osteo-arthritis in at

least one or more joints. Dr, Dobbs said, " The longer the patients

were followed, the worse they did. " Dr. Dobbs said that the study

should be published in the next year or so.

About this point, at the end of Dr. Dobbs' presentation, one of the

older doctors who was visiting Iowa stated that 3 years before he

died, Dr. Turco had presented, but didn't publish, that his patients

who had Turco method surgeries had done poorly. Dr. Turco's

surgical method was developed during the 1950's and he published a

15 year outcome study on his method in 1979 and other papers in

1974, 1981 and 82. Dr. Turco died at age 82 in 1998 in

Providence, Rhode Island.

After this, Dr. Ponseti stated that when he came to the U of Iowa in

1941, one of his first assignments had been to study the long term

outcomes of clubfoot patients who had been treated surgically. He

said that the outcomes he saw and studied were very poor and that

was what had spurred him to look for a different way of treatment.

A copy of the introduction to Dr. Ponseti's book " Congential

Clubfoot, Fundamentals of Treatment " 1996 with his basic explanation

of the historical development of his method can be found in the

files section of the nosurgery4clubfoot group site under reference

information. You have to be a member of this group to access the

files sections but it's free.

http://health.groups.yahoo.com/group/nosurgery4clubfoot/files/Referen

ce%20Information

I had posted a summary of my understanding of the prior 4 Ponseti

method long term outcome treatment studies in the past. A link to

that message can be found at

http://health.groups.yahoo.com/group/nosurgery4clubfoot/message/16462

9:30 " Worldwide Approach to Clubfoot Treatment "

--Norgrove Penny, MD

Dr. Penny presented a great summary of the worldwide issue of

140,000 clubfoot children being born per year with 80% of them in

the developing world. He reviewed the Uganda Clubfoot project and

other projects in Malawi, Ghana, Nepal, China and training being

done by the U of Iowa in many Central and South American Countries.

They are working on developing a coordinating center that can help

organize donors, countries, doctors, supplies, training materials,

etc. with areas that want a program. They are hoping to take it to

the World Health Organization and get their endorsement of the

general method of conducting it. Having one centralized

organization to deal with the administrative stuff will let the

doctors deal more with going out and doing it as well as making it

easier for more doctors to go.

One of the other great things at the meeting was a parent who is at

the Mc house with her 3 year 9 month old adopted

daughter from China with untreated clubfoot. Dr. Ponseti is

treating her and they are hopeful that it will work to at least

minimize any possible surgery and push back the time frames of when

using the Ponseti method is still possible.

Dr. Penny explained that he and Dr. Mark Sinclair from Germany went

to China to begin helping a few centers learn about the Ponseti

method. He said that because of China's one child rule, that often

children with disabilities are discarded to die while the luckier

ones may get to orphanages. They are hopeful that if the Ponseti

method catches on there, that more children will survive, be treated

and adopted.

One doctor mentioned that she was occasionally brought in to

counsel " high risk " pregnancies. She said that when the ultrasounds

detect a condition like clubfoot, often the parents are sent to

a " high risk " OB doctor who gives them some additional information

and offers advice on alternatives, including abortions. This doctor

said that the first time it kind of shocked her to go into talk to a

pregnant mother who had been told that abortion was an alternative

to having a baby with clubfoot. She said she tried to very

clinically tell the pregnant mother that most likely her child was

normal and that current Ponseti method treatment would mean that the

child would be functionally normal in every way. The doctor noted

that we need to get this information out to prospective parents so

that they don't make assumptions based on outdated and incorrect

treatments.

On Saturday, the older children were examined including two - 49

year olds, Ross Snyder and a guy from the Atlanta Track Club, who

had both been treated by Dr. Ponseti in the 1950's. Also, a 25 year

old 1st year medical student at the U of Iowa that Dr. Ponseti had

treated a long time ago. There were also lots of kids from about 7

on down. There were probably about 15-20 who raced and about 50-75

who watched. There had been a Friday night dinner of parents at

Bennigans in the Coralville Mall. On Saturday, the parents had

snacks in the lounge area of the lower level while the older

children were examined and prior to going over to the races. The

races were really cute as Dr. and Mrs. Ponseti sat in chairs at the

finish line about 25 yards from the start. The races were divided

by age groups and were just for fun. There were a couple of

children racing in casts that did great. Although the younger

children went just the 25 yards, the 5-7 year olds decided that they

needed to use the full quarter mile track and they just took off for

the full distance once around. The final race was the two 49 year

olds who took off and ran the full quarter mile lap around the

track.

It was a great 2 days and fun to meet a number of other parents

there. I hope that I have communicated what each doctor said

accurately. Please remember that I am a parent and not a doctor and

this is my understanding of what was said during the meetings. It

is possible that I may have misunderstood someones presentation and

or not recorded important details of what they presented, so please

do your own research on this information. I hope that this

information is of help to others.

, Allyson and (born 3-17-99)

http://www.vh.org/pediatric/patient/orthopaedics/clubfeet/egbert.html

October 20, 2005