Re: About skeptical doctors

December 17, 2000

,

My input won't amount to much encouraging news. Since Annika's

treatment in May of 1999, we have spoken to doctors that we had

consulted with prior to our going to Iowa. The response was the

same as the doctor who replied to you. (Matter of fact, I started

wondering if it was the same doctor because the wording was so

similar).

For a doctor who is that skeptical, there isn't much (I don't think)

that a parent can do to even encourage them to seriously consider

looking into the validity of your message. Even the doctors who ARE

well trained in the Ponseti method and who have experience, have a

very difficult time getting skeptical doctors to understand the

differences between what they do during manipulations/castings and

what the Ponseti method does.

As far as reasons; there can be SO VERY many.

#1: Training: once trained in one particular method, it is difficult

for some/most to see that there may be a better, less invasive way to

correct the feet. They have been trained, in school, that following

casting (where there is very little time given to instruction on this

point) surgery is the way to correct clubfeet.

#2: Lack of exposure: Most doctors have never even been exposed to

what the Ponseti method REALLY is or does. Many think they have a

perfectly good idea, but that idea is almost never based on

observation of the Ponseti technique in practice. Rather that idea

gets based on what they have heard from other doctors/instructors and

from reading the Ponseti material and not having a decent

comprehension of the actual mechanical function of the anatomy of the

feet.

#3: Resistance to change: Changing to the Ponseti technique could

radically alter the structure of a doctors' practice. If they are

already skeptical, they may just not want to deal with what the drop

in income may do to their practices. Remember, many of these doctors

have spent 15 plus years building their practices; and while treating

clubfoot may be a small portion of their business, it would

significantly reduce the income into their practice. And they may

LIKE doing surgery, and even if they were to realize that the Ponseti

method is valid, they may not want give up their surgical treatment

of cases that require surgery. This is a tough topic.

#4: Inability to duplicate: I was told by one ped ortho that if the

method cannot be duplicated by other doctors by reading the book

(that Dr. P authored) there must be some other factor involved and

therefore the results that are quoted in the book are questionable.

Hence the suspicions that Iowa gets less severe cases (which seems

just utterly silly to me coming from educated individuals like ped

orthos). But, what doctors who may say this aren't taking into

account, is their own ability (or lack thereof) to interpret and

apply correctly, the instruction in the book. I find it funny that

doctors think that they should just be able to 'pick up' this

technique from a book because (I think) it's not a surgical

proceedure. I think it is just widely assumed that it (the Ponseti

method) should require less traing or supervision than learning a

surgical proceedure. I ask, WHY? Not all doctors come with the same

level of comprehension of the functional anatomy of the feet. And

while I would not suggest that anyone point that out to their

doctors, it is something that we as parents need to keep in mind, and

that is: Doctors are fallible.

There are a few doctors that received training by Dr. Ponseti and

still weren't able to duplicate the technique. I submit that some

doctors are incapable of it. But I know for DARN sure that plenty of

doctors ARE CAPABLE. So, it doesn't amount to 'artistry' or 'gift'.

I think it amounts to ability to understand the function of the foot

which leads to the understanding of how/why Dr. Ponseti's technique

works. And I do think it amounts to some 'inate' ability to apply

the technique...but does a doctor need " The GIFT " to apply it....I

don't think so.

Oh, and one last thing about the xray differences. Yes, you got Dr.

P's opinion correct. I have heard of several cases however, where

children treated with Ponseti method, had xrays that appeared as good

as their original doctors would have expected following surgery. A

perfect xray does not guarentee a functional foot, however.

Ponseti's technique and studies of his technique have demonstrated

that although xrays of 'their' feet are not 'optimal' by Surgical

Standards, that the functional outcome of a foot treated

nonsurgically was similar to that of people of the same age who had

no foot problems at all. There are NO long term studies of surgical

patients that could be used to compare the functional outcome. From

the studies/books that I've looked at, I haven't seen reference the

rating the functional outcome of feet after surgery. Yes, they rate

the success of correction based on the xrays....doesn't do much good

to a person if they have 'beautiful' bones, but have early arthritis

at the age of 30? I hope the Ped Ortho world DOES change their

standards for rating success...would sure like to see a long term

outcome study of surgically treated patients older than 15?!

Well, I gotta go...was up late E-shopping for xmas....

Don't know if that was helpful...but those have been just SOME of my

observations and certainly not all.

Lori and Annika

December 17, 2000

About xrays:

I am xraying my patients as they achieve correction: before and after

tenotomy. 2 of my patients so far are true bill severe clubfeet, one

not so severe (but no treatment until 8 wks age so not easy). The

patients that I have xrayed have good xray correction, better than I

have seen in operative cases. People are sceptical because they

don't understand this method and therefore can't personally acheive

the results.

As I keep saying, I am just learning all this stuff myself, I am not

the expert, but I think that it pays to have an open mind.

son

December 17, 2000

So what Zowie's treatment is called is the traditional method?

Shanna

Re: About skeptical doctors

>,

>

>Chloe was treated by the tractional method. Luckily she was one of the

>few who's foot was correctable without surgery. I did have a

>conversation with her ortho about Dr. Ponseti. I asked if he had heard

>of him. He said yes and that he respected him very much. I asked about

>Ponseti's Method. To which he said something like Dr Ponseti sees great

>results with his method, but other Dr practicing his method can't seem to

>achieve such great results. He went on to say that Dr Ponseti must have

> " magic hands " .

>

>What I think our ortho is referring to is the Dr's that " claim " to be

>using the Ponseti method but who really aren't following it so they are

>not getting the same great results. Our ortho obviously does not realize

>that there are orthos who can get the same results by completely

>following the Ponseti method.

>

>Tina

>

>On Sun, 17 Dec 2000 05:12:34 -0000 " Audilet "

> writes:

>> Hello all,

>>

>> I got a letter today from a pediatric orthopedic surgeon whom I had

>> written to tell about our experience with the Ponseti method. We

>> hadn't ever gone to him, but we'd been referred to him. Although it

>> wasn't an unkind letter, I'm a bit bothered by it, and I wonder if

>> any of you out there have any insight into the reason some doctors

>> are so resistant and/or skeptical about the method.

>>

>> First, he said that he and his colleagues do use the Ponseti method

>> (which I'm not so sure about), but that it only works on " selected "

>> patients. Then he indicated that the supposed high success rate of

>> the Ponseti method is debatable because " success " is measured

>> differently by different doctors, and if you value X-ray results,

>> the

>> success of the method isn't as great. Then, although he didn't

>> say it outright, he implied that the high success rate in Iowa could

>>

>> be the result of working mainly on easy cases (which I know isn't

>> true). He ended up saying that there is no one, easy answer to

>> clubfoot correction, and that it certainly wasn't necessary for me

>> to

>> leave the state for treatment.

>>

>> Maybe you all have heard this kind of thing before. I didn't really

>> expect, as a lay person, to make a huge impression on a doctor, but

>> I

>> thought it was worth a letter. The resistance is surprising to me..

>> since they all try conservative methods first. You'd think they'd be

>>

>> curious.

>>

>> About the X-ray issue: It's right, isn't it, that Dr. Ponseti says

>> that X-ray perfection doesn't really matter, that he has found that

>> the function of the corrected foot, despite radiologic differences,

>> is as good as a normal foot? Do any of you know if other doctors

>> think those radiologic differences will cause the patient some sort

>> of problem in the future?

>>

>> I'd be interested in any feedback you all might have.

>>

>> ('s mom)

>>

>> -------------------------- eGroups Sponsor

>>

December 17, 2000

Tina,

I'm so glad that you made this point...happens very frequently among

doctors who are colleagues and obviously happens to parents as well.

Lori

> What I think our ortho is referring to is the Dr's that " claim " to

be

> using the Ponseti method but who really aren't following it so they

are

> not getting the same great results. Our ortho obviously does not

realize

> that there are orthos who can get the same results by completely

> following the Ponseti method.

>

> Tina

December 17, 2000

Shanna,

Please don't take a lot of what you see here personally. Sure, my son

was treated using the Ponseti Method, but we don't see Dr. Ponseti by

any means. Zowie's doctor is obviously doing something right and that's

fantastic. I think one reason most people do recommend Dr. Ponseti

himself is because they have had such a good experience with him. I

have had a wonderful experience with Dr. Weinstein and would recommend

him in a heartbeat. We did deal with another ortho for Jakob's first

set of casts (which, in hindsight, did nothing to correct his feet - in

fact, they could have caused problems had we continued with them). This

first ortho did not answer our questions and gave us no information

whatsoever. Dr. Weinstein has always answered our questions and taken

the time to explain things to us in ways we can understand. I

personally feel extremely lucky to have been living in Iowa City when

Jakob was born. When we were first told about his clubfeet after he was

born, the nurses basically told us not to worry that it was " fully

correctable " and that he would " have casts and wear a brace " . No one

ever mentioned surgery to us at any point. After we had settled into

life with a newborn, I tried searching on the internet for clubfoot. I

found mostly info about clubfoot in horses and what I did find about

clubfoot in humans dealt strictly with surgical correction. At that

point, I started wondering if the doctors here knew something that

doctors elsewhere didn't know. Or were the doctors here not telling us

what everyone else heard (being that the baby would require extensive

surgery). Personally, I do not consider the percutaneous tenotomy that

Jakob had (which was done in the office with just local anesthesia)

surgery. Others may consider it surgery. While Jakob was in casts and

first in the DBB, we knew of no one else that had gone or was going

through this type of treatment. Believe it or not, I only know of 2

other LOCAL families whose children have been born with clubfoot (one is

listed on Dr. Ponseti's web site and the other family I met through a

local breastfeeding group at the hospital Jakob was born at). Every

other family I know of with a child with clubfoot is online in 1 of 4

places (the 2 mailing list here at egroups, the Parents Place message

board, and 1 other web site). I have felt that the things I have had to

say at Parents Place and the clubfootegroups list have been

completely ignored (except by Joy - Thanks Joy!). It was a year ago

while Becky Cresto was in town that I found out there were many others

who were going through the same things we had. It was through Becky

that I found out about , who encouraged me to get onto Parents

Place (which I hadn't even looked at Jakob had been about 2 weeks old)

and to put our story on there. I still feel like I don't belong there.

It's one of the main reasons I started this list. On Parents Place, I

kept seeing people say that the DBB was torture for their child (and

it's never been a big deal to us). I also still see so much more

surgical info, that I really feel that people do need a place to discuss

issues with the non-surgical (or minimal surgical - if you consider the

tenotomy surgery) methods.

I know I also wouldn't be able to afford flying halfway across the

country to see Dr. Ponseti (should we have been somewhere else when

Jakob was born). In fact, up until 1997, my husband and I had been

living in Albuquerque, NM (where Dr. Brown is). However, I do know that

the insurance we had there was not through the same hospitals as he

practices. I do sometimes wonder if we would have found out about Dr.

Brown had we been in Albuquerque when Jakob was born.

I know I don't post on every thread, but sometimes someone has already

said everything I would have said anyways. Or maybe I don't have

personal experience with the topic on hand (i.e.. anything dealing with

the French Physiotherapy Method or how good the Gap socks are).

I do hope you realize that no one is trying to make you feel like you

aren't doing the best for Zowie since you aren't bringing her to see

Dr. Ponseti. You say you've spoken with him and he feels your doctor is

doing a fine job. It seems to me that you've checked out your options

and you're happy with your decisions. By doing all you have for Zowie,

you have done what is best for her and your family. All of us here can

only do what we feel is the best for our families. I hope this makes

you feel a little better.

December 17, 2000

> A,

> Did you write to my doctor?! When we spoke to Rose's ped ortho about

> Dr. POnseti's method, he pretty much said the exact same things! I also

> wrote to him after treatment and sent him pics (I wanted to get an

> appointment, but he wasn't available the couple of times I was going to

> be travelling the 3 hours to Marshfield). He replied with a very

> similar letter. I haven't even spoken to the ortho who originally

> was casting Rose because I don't think I could be nice. The biggest

> disappointment for me has been our family doctor. Rose's foot looks

> perfect and functions as close to a normal foot as possible. She's

> concerned because it is still a little over extended. But not when

> she's walking, though! Just when her foot is relaxed. Anyway, I was

> anticipating a more excited, WOW, I can't believe how great her foot

> looks (and no scars?!) reaction. My ob was impressed but just didn't

> seem very interested.

>

> I'm sorry you've also had this reaction from a doctor. As to the xray

> thing, Rose's doctor said the same thing, and I wasted a month or two

> not calling Dr. Ponseti because of it. From what I have heard, patients

> treated with the Ponseti Method have a low incidence of pain and

> problems in adulthood. With surgery, I was concerned about scar tissue,

> etc. Rose's ped ortho said that he guessed we were between a rock and a

> hard place deciding between possible pain from surgery or a foot that

> wasn't radiologically correct (or something like that).

>

> Well, I've rambled long enough! I hope someone is able to answer your

> questions better, but I just wanted you to know you aren't alone.

>

> JOy

Joy,

Your letter to once again is some kind of carbon copy of our

experiences. (Sound just like when I wrote you so many months ago thanking you

for your personal story of Rose and wondering if it could work for .) I

was very hurt when I took to her 6 month (which she was actually 7 1/2

months old, late because shots were'nt possible with full leg casts) well baby

check up to have my very long time and trusted pediatrician say " WOW, you

traveled all the way to Iowa, must have been a long summer, and now you have to

deal with more casts, and full leg at that! " I told her all we had been through

and she knew it because she was there when was born. She knew all along

how hard I was taking the fact the needed full blown surgery at 10 or 11

months. I went in there glowing at the pure sight of 's wonderfully

corrected feet and expected her to be just as astonished and happy as I was.

I'm sure she was happy for us (in fact I know she was) but she just did'nt " get

it! " 3 months later at 's 9 month appt. she remarked that 's feet

look great and she said they look as good as the one other baby she has as a

patient who had surgery, actually better because she does'nt have the scars.

She said she was impressed with the results but then went on to say, wow,

's 9 months now and still not crawling? That's when I decided that a

doctor who has only seen 2 patients with clubfeet in all her years of practice

surely is'nt going to understand that delays may very well happen because of a

certain choice of treatment. I told her that " gives into " her shoes and

does'nt try to crawl or stand when she has them on, and she has them on all the

time. This time I came out of the office blowing everything except for her

regular check up advice off! I think once you try and then try again and you're

still " shot down " what's the point in trying with this paticular doctor again.

So, I decided to go to the source that sees the babies even before the

pediatricians get a hold of them. My O.B. Just like you. But unlike your story,

mine is so interested that they almost could'nt control themselves. I guess

it's just a difference in attitude, in judgment, in personality, and maybe most

of all in theory.

When it comes to doctors changing there ways, I agree with all that Lori wrote.

I even think some may be affraid that they won't be able to achieve the same

results weather they follow the method to it's entirety or not. So they dismiss

it and say comments like: " he must have MAGIC HANDS! "

Might I also add since I have read all the comments on this particular subject

that I feel doctor Ponseti has earned every right to be as praised as he is by

so many parents and doctors and nurses that are currently on this board. He has

saved many children from surgeries that may have in their futures caused them

unnessessary and painful outcomes and at the same time saved their parents from

the heartache of having to put their children through that. Please don't

missunderstand me, I would have had the surgery for if I had not of known

there was another choice. I almost did. As hard as that would have been for me

personally I know that would have achieved corrected feet and that was

our goal. But when faced with the possibility of a correction without surgery

and a future that looked even brighter than even surgery could have offered, we

put in in full gear to Iowa weather we could afford it or not. Like I said in a

recent post, traveling to Iowa has gotten extremely hard for us and that's why

we were so thankful that we can go to U of M for follow ups. For those of us

who have traveled to Iowa I don't think it was " easy " any way you look at it. I

origionally even asked Dr. P if there was a doctor closer that we could see.

There was'nt. Let's put it this way, if in the 3 months of " traditional "

treatment that recieved after birth she obtained full correction and no

surgery, except of course the tenotomy, I honestly would'nt have ever know that

this board exsisted! I found this site through people who were going through

the same experiences and frustrations that I was and part of it I stumbled on

because my heart was aching over the pure fact that I was'nt dealing with

's prognosis very well at all. I think it's wonderful that some children

are completely corrected with the traditional method without any other surgery

then the tenotomy done in some of even those cases. But, I don't think that

ENOUGH children are corrected with that method to say that I believe in it. I

don't and that's why I started writting here. I WISH would have been one

of those lucky children when we started at 5 days old.

Just some of my thoughts,

Holly

>

> http://community.webtv.net/joybelle15/ROSESCLUBFOOTPAGE

>

December 17, 2000

Donna,

This is the gal you and I saw in Iowa w/ the baby girl on our last trip,

sitting across from us. She sounds like me, a dumb lay person trying to

convince a HOIER than thou Orthopod! AAAARGGG! Read her post..

Audilet wrote:

>

> Hello all,

>

> I got a letter today from a pediatric orthopedic surgeon whom I had

> written to tell about our experience with the Ponseti method. We

> hadn't ever gone to him, but we'd been referred to him. Although it

> wasn't an unkind letter, I'm a bit bothered by it, and I wonder if

> any of you out there have any insight into the reason some doctors

> are so resistant and/or skeptical about the method.

>

> First, he said that he and his colleagues do use the Ponseti method

> (which I'm not so sure about), but that it only works on " selected "

> patients. Then he indicated that the supposed high success rate of

> the Ponseti method is debatable because " success " is measured

> differently by different doctors, and if you value X-ray results, the

> success of the method isn't as great. Then, although he didn't

> say it outright, he implied that the high success rate in Iowa could

> be the result of working mainly on easy cases (which I know isn't

> true). He ended up saying that there is no one, easy answer to

> clubfoot correction, and that it certainly wasn't necessary for me to

> leave the state for treatment.

>

> Maybe you all have heard this kind of thing before. I didn't really

> expect, as a lay person, to make a huge impression on a doctor, but I

> thought it was worth a letter. The resistance is surprising to me..

> since they all try conservative methods first. You'd think they'd be

> curious.

>

> About the X-ray issue: It's right, isn't it, that Dr. Ponseti says

> that X-ray perfection doesn't really matter, that he has found that

> the function of the corrected foot, despite radiologic differences,

> is as good as a normal foot? Do any of you know if other doctors

> think those radiologic differences will cause the patient some sort

> of problem in the future?

>

> I'd be interested in any feedback you all might have.

>

> ('s mom)

>

December 17, 2000

Dear Shanna,

I am really hoping that I can maintain some degree of objectivity in

responding to your post. I am so confused, let me tell you why.

First of all, I have posted MANY times on this board in my four

months

here, and sometimes I may only get one post back and there have been

a

few times where I have NOT gotton a post back. I just figure, that

much like myself, there are times that all one can do is barely get

through their EMail, let alone be able to respond to all of them.

While this list and other 'group' type email situations are ideal for

getting people 'connected', it does make for quite a busy email box.

So... I cannot imagine why anyone would take lack of responses to

posts personally.

Another bit of confusion you could clear up for me.. while I have

kept

up on Zowie's story through your posts and even visited her website

(which is REALLY cute :oD ) I guess I have never understood exactly

WHAT technique your ortho ascribes to? YOu say he does not practice

the Ponseti technique, but the full- leg casts, manipulations,

tenotomy and use of the DBB are classic traits of the Ponseti

technique. Unfortunately there are many docs out there, that just

CAN'T admit that this technique is a MIRACLE for MOST (note: I did

not say ALL nor does Dr. Ponseti) clubfoot kids. In any event,

throughout your story I have wondered just WHAT does your doc say he

practices as far as his technique? Kite used long leg casts too, but

no tenotomy or DBB there, so that doesn't add up.

NOW... onto the real HEART of why your post really affected me.

Shanna, I am the mother to SIX children under the age of nine. NOne

of my children had clubfoot or any other defect until my last

delivery.. which was the birth of my twins (boy and girl) on June

25,00... and my boy twin, Kavan Josiah was born with bilateral

clubfoot. I live in Indiana Shanna, and one of my BEST friends is

the

local Neonatologist at our hospital who also founded our Neonatal

INtensive Care Unit, where my twins spent a month in , as they were

six weeks premature. I tell you this because not just me as a

parent,

but my best friend who is a doctor who has cared for newborns for 21

years and I went through the 'experience' of NON-Ponseti tx for

clubfeet as well as Dr. Ponseti.

When Kavan was born, the local Pediatric Orthopaedic SURGEON was

called and we began casting/ manipulation on DAy one of my son's

life.

For the first ELEVEN weeks of his life, I took him weekly for

hideously PAINFUL manipulations which consisted of the doc CRANKING

his foot while blanching it WHITE for approx. 10 minutes. He would

follow this with a what we would soon learn was worthless, short leg

cast. Twice, Kavan kicked the cast off! This was my first indication

that hey.... 'if he can kick it off, how is it holding his foot/leg

in

a corrected position?'. In any event, my ortho kept saying that in

" six weeks casting/manipulation " Kavan's foot would be 'fine' etc...

Well, lo and behold, after the 11th week , I DEMANDED xrays when I

felt the ortho was evading my questions, and there was NO change in

his feet! MInd you, my doctor friend accompanied my twins and I to

EVERY appt. as well, and was also very concerned about the LACK of

progress. My mother's instinct began SCREAMING to me that this was

not right, I researched on the Net, found the POnseti technique and

went straight to the horse's mouth, so to speak and called the U of

Iowa and then talked to Dr. POnseti.

Now Shanna, I am NOT wealthy, therefore i could NOT fly to Iowa

immediately as I wanted to, HOWEVER, I had a baby who was almost 3

mos. old and I knew that if the POnseti technique was to be

successful, I must act quickly. Many here have been in my EXACT

situation where time is of the essence, that is why it may APPEAR

that

we just 'jet' off to Iowa out of luxury, where in reality, it is our

LAST chance. AFter all, I had WASTED 12 FREAKING weeks with my local

pediatric orthopaedic SURGEON.

I must be careful as this is getting to long, long story short, after

only 3 castings with THE Dr. Ponseti and a bilateral tenotomy ( which

is a part of Dr. Ponseti's treatment, I don't think you understood

that by your post) Kavan's feet are 100% corrected. Yes, he too

wears

the DBB 3 mos. 24/7 AS THAT IS PART OF THE PONSETI REGIMEN!!!! My

doc

friend accompanied me to all the Iowa trips, and incidentally was

totally impressed with what she saw and learned. So.... I ask you to

try to be objective to MY situation. I will ALWAYS have the guilt

over the pain and sacrifice my son endured at the hands of a doctor

whose surgery rate POST casting/manipulation is 100%!!!! I am the

only one who knows HOW badly my son hurt, as did my other children

and

my husband and I as our baby son sufferend UNNECESSARILY, so PLEASE

do

not expect me to not admonish other parents to NOT make the same

mistake I made with my son. Since you have not walked in my shoes,

you have no right to expect that of me.

This board was formed by Dr. Ponseti's patients and patient's whom

his

method was done via other Ponseti practicing physicians, and that is

the the bottom line. This is the ONLY place I have found refuge and

understanding for what I have gone through, and I refuse to sit back

as it is attacked so unfairly. If you haven't found Parent's Place

clubfoot bb, you may want to go there if you want 'objectivity' or

whatever it was you feel you are not getting here. I feel so badly

that you have missed what a special place this is, maybe it is

BECAUSE

you have NOT had the BAD experience MOST of us parents have had first

before finding Dr. POnseti and his technique, and I am so glad you

haven't. I hope that your doctor and your experience with him

continues to be as positive, and that your beautiful daughter will

have corrected, painless feet. That is OUR goal at this bb, please

be

understanding of where we are coming from. I wish you the best of

luck with the transition to the bar and continued success with

Zowie's

feet.

Tina and Kavan (born: 6-25-00 w/ bilateral clubfoot,

wasted 11 weeks w/ non-Ponseti SURGEON!

feet by God, but touched by the MASTER of

clubfoot, *Dr. Ignacio Ponseti*

*I am the founder of the new Clubfoot Support Group of

East Central Indiana.... our mission: To make new parents

of Clubfoot kids aware of the wonders of the Ponseti method

-- In nosurgery4clubfootegroups, " Shanna " <sherbahn@g...> wrote:

> You know I do have something to say about this. Well as you all

know

that

> Zowie is not being treated by the Ponseti method and she is doing

just as

> well as all of your kids are. SHe will be graduating to the DBB on

> Wednesday. I feel that any dr will treat our kids with the best of

knowledge

> they have and were trained in. For some reason I feel that when I

come on

> this board all we ever talk about is Dr Ponseti and the Method.

Well

I

> myself cannot afford to fly so far to get this treatment and I

think

not

> everyone can either. So I think it be fair that persons on this

board should

> not be attacked and told to go to Ponseti. I dont mean to be so

rude

or

> anything but it just seems that all everyone here is doing is

telling

> everyone to find someone that knows how to do the Ponseti method

when all in

> all Dr Ponseti himself said our Dr was doing a great job. And yes

alot of

> kids do have to get surgery because as with Zowie needed a tenotomy

and I

> think Dr Ponseti would do those also right? Well in my book that is

the same

> treatment. I do see how Dr Ponseti treats these kids with minimal

casting

> but as with Zowie's experience she has done wonderful with the

castings and

> the surgery was what she and many other children have needed to

correct

> this. Now I do see why you are all giving people good input about

the

> Ponseti method but I dont see why it is sooo important that everone

go seek

> a Dr that practices this. Now there is a Dr in Fairbanks near me

that does

> this and another Dr here in town that was willing to learn the

Ponseti

> method but after speaking with Dr Ponseti myself I felt we were in

good

> hands. So what I guess I am saying is this board is for advice and

we get

> alot of great advice here, but if we cant find a Dr that doesnt

perform the

> Ponseti method we feel as if we are not god enough or that our

children are

> being treated the wrong way and that that is not good enough for

the

board

> here. I have posted many messages here and being one of the people

not being

> treated by the Ponseti method I fee I am not getting the response

as

if I

> would be getting treated with hi method. And those that are

pregnant

with

> babies that have clubbed feet. I feel they should be able to chose

a

dr they

> are comfortable with. That is just what I feel sorry if I sound to

rudely

> about it.

> Shanna SHerbahn

> Oh and again by the way Zowie is graduating to the DBB if you didnt

see my

> many posts I have written. This will be on Wednesday.

> Re: About skeptical doctors

>

> >,

> >

> >My input won't amount to much encouraging news. Since Annika's

> >treatment in May of 1999, we have spoken to doctors that we had

> >consulted with prior to our going to Iowa. The response was the

> >same as the doctor who replied to you. (Matter of fact, I started

> >wondering if it was the same doctor because the wording was so

> >similar).

> >

> >For a doctor who is that skeptical, there isn't much (I don't

think)

> >that a parent can do to even encourage them to seriously consider

> >looking into the validity of your message. Even the doctors who

ARE

> >well trained in the Ponseti method and who have experience, have a

> >very difficult time getting skeptical doctors to understand the

> >differences between what they do during manipulations/castings and

> >what the Ponseti method does.

> >

> >As far as reasons; there can be SO VERY many.

> >

> >#1: Training: once trained in one particular method, it is

difficult

> >for some/most to see that there may be a better, less invasive way

to

> >correct the feet. They have been trained, in school, that

following

> >casting (where there is very little time given to instruction on

this

> >point) surgery is the way to correct clubfeet.

> >

> >#2: Lack of exposure: Most doctors have never even been exposed

to

> >what the Ponseti method REALLY is or does. Many think they have a

> >perfectly good idea, but that idea is almost never based on

> >observation of the Ponseti technique in practice. Rather that idea

> >gets based on what they have heard from other doctors/instructors

and

> >from reading the Ponseti material and not having a decent

> >comprehension of the actual mechanical function of the anatomy of

the

> >feet.

> >

> >#3: Resistance to change: Changing to the Ponseti technique could

> >radically alter the structure of a doctors' practice. If they are

> >already skeptical, they may just not want to deal with what the

drop

> >in income may do to their practices. Remember, many of these

doctors

> >have spent 15 plus years building their practices; and while

treating

> >clubfoot may be a small portion of their business, it would

> >significantly reduce the income into their practice. And they may

> >LIKE doing surgery, and even if they were to realize that the

Ponseti

> >method is valid, they may not want give up their surgical treatment

> >of cases that require surgery. This is a tough topic.

> >

> >#4: Inability to duplicate: I was told by one ped ortho that if

the

> >method cannot be duplicated by other doctors by reading the book

> >(that Dr. P authored) there must be some other factor involved and

> >therefore the results that are quoted in the book are

questionable.

> >Hence the suspicions that Iowa gets less severe cases (which seems

> >just utterly silly to me coming from educated individuals like ped

> >orthos). But, what doctors who may say this aren't taking into

> >account, is their own ability (or lack thereof) to interpret and

> >apply correctly, the instruction in the book. I find it funny that

> >doctors think that they should just be able to 'pick up' this

> >technique from a book because (I think) it's not a surgical

> >proceedure. I think it is just widely assumed that it (the Ponseti

> >method) should require less traing or supervision than learning a

> >surgical proceedure. I ask, WHY? Not all doctors come with the

same

> >level of comprehension of the functional anatomy of the feet. And

> >while I would not suggest that anyone point that out to their

> >doctors, it is something that we as parents need to keep in mind,

and

> >that is: Doctors are fallible.

> >There are a few doctors that received training by Dr. Ponseti and

> >still weren't able to duplicate the technique. I submit that some

> >doctors are incapable of it. But I know for DARN sure that plenty

of

> >doctors ARE CAPABLE. So, it doesn't amount to 'artistry' or

'gift'.

> >I think it amounts to ability to understand the function of the

foot

> >which leads to the understanding of how/why Dr. Ponseti's technique

> >works. And I do think it amounts to some 'inate' ability to apply

> >the technique...but does a doctor need " The GIFT " to apply it....I

> >don't think so.

> >

> >Oh, and one last thing about the xray differences. Yes, you got

Dr.

> >P's opinion correct. I have heard of several cases however, where

> >children treated with Ponseti method, had xrays that appeared as

good

> >as their original doctors would have expected following surgery. A

> >perfect xray does not guarentee a functional foot, however.

> >Ponseti's technique and studies of his technique have demonstrated

> >that although xrays of 'their' feet are not 'optimal' by Surgical

> >Standards, that the functional outcome of a foot treated

> >nonsurgically was similar to that of people of the same age who had

> >no foot problems at all. There are NO long term studies of

surgical

> >patients that could be used to compare the functional outcome.

From

> >the studies/books that I've looked at, I haven't seen reference the

> >rating the functional outcome of feet after surgery. Yes, they

rate

> >the success of correction based on the xrays....doesn't do much

good

> >to a person if they have 'beautiful' bones, but have early

arthritis

> >at the age of 30? I hope the Ped Ortho world DOES change their

> >standards for rating success...would sure like to see a long term

> >outcome study of surgically treated patients older than 15?!

> >

> >Well, I gotta go...was up late E-shopping for xmas....

> >

> >Don't know if that was helpful...but those have been just SOME of

my

> >observations and certainly not all.

> >

> >Lori and Annika

> >

December 17, 2000

Shanna,

I think that there may be some misunderstanding. From what you have

described as the treatment your child has received, it all has

sounded very similar, although perhaps not exactly the same as the

Ponseti method. We are glad that Zowie has been doing well and has

been able to avoid the major clubfoot surgery.

I am not sure that you realize that 75-80% of the Ponseti method

children, inlcuding our son, have also had the tenotomy just like

your child. Although technically some might consider the tenotomy as

surgery (and you have referred to it as surgery) most of us and those

who use the Ponseti method refer to a tenotomy as a " non-surgical "

procedure. The Wheeless textbook of Orthopedics also includes a

tenotomy in it's description of a non-operative type of clubfoot

treatment. http://www.medmedia.com/o14/120.htm

The tenotomy type procedure that you and most of us have experienced

is to some degree really no big deal at least when compared to the

major clubfoot surgery. It is the major clubfoot surgery that the

Ponseti method tries to avoid. The descriptions of the major surgery

types of procedures can also be read about on the same Wheeless

textbook site listed above. http://www.medmedia.com/o14/120.htm

I think that your doctor should be commended for doing things like

long legged casts and the tenotomy and being able to avoid the major

clubfoot surgery. But so far, in the past 18 months, other than with

doctors who have used the Ponseti method, I have only remembered

hearing of 2-4 other parents on the internet whose non-Ponseti method

doctors also used a tenotomy. I hope that your doctor is able to

achieve those good " non-surgical " results on the majority of children

that he treats.

The major clubfoot surgery, which is much more involved than a

tenotomy, is what the majority of pediatric orthopedists do for about

65-95% of the children they treat. So there are 5-35% of the milder

cases of clubfoot that most orthopedists correct without the major

surgery. Even with the Ponseti method, there are still about 5% of

children who will need at least the posterior release portion of the

major clubfoot surgery.

There are about 45 of us on the internet who have gone to a Ponseti

method doctor after being told by our original pediatric orthopedist

that our childs clubfeet were too severe to be corrected without the

major clubfoot surgery. Our objective has been to try to find ways

to tell other parents that " non-surgical " treatment is available and

possible for any parent who wants to know about it. I agree that

there will be many parents who when they know about all of the

different treatment methods for clubfoot will choose not to use the

Ponseti method. That is fine, as long as parents know there are

alternative methods, the risks and potential complications of each

and have the ability to make their own choices.

One way to look at it is that in the US there are approximately 5,000

children born per year with clubfoot. My guess is that somewhere

between 3,500 and 4,000 parents of those children are told that their

child's feet can only be corrected by using the major clubfoot

surgery. In reality, if the Ponseti method was used, only about 250

of those children would actually have to have the major clubfoot

surgery. That means that theoretically, there are 3,250 to 3,750

children who undergo major clubfoot surgery every year that may

really not have needed to if the Ponseti method was used. And then

statistically, about 25% of those children who have had a first major

clubfoot surgery will end up having a second major clubfoot surgery.

In the files section of this site is a copy of a letter from Dr.

Feldman, the Chief of Pediatric Orthopaedic Surgery at the

Center for Children at NYU's Hospital for Joint Diseases, New

York,

New York who traveled to Iowa City last February 2000 to learn

firsthand about the Ponseti method. See the item called

FeldmanPediatricianltr.doc at

/files/nosurgery4clubfoot/

A month after his visit Dr. Feldman wrote,

" 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.....I

believe the pediatric orthopedic community has ignored an important,

if not revolutionary, technique in treating clubfeet. "

Since March 2000, there been a number of parents here who have had

their children treated at NYU with the Ponseti method including some

recent parents who put together this great photo web site that

includes Dr. Feldmans recent use of the Ponseti method (including the

tenotomy) http://members.aol.com/vc11/

This is not to say that the major clubfoot surgery is not needed,

because it is important where conservative methods have not worked or

cannot work. But are doctors telling parents the potential risks and

complications of the major clubfoot surgery and that there are proven

" non-surgical " alternatives with fewer potential risks and

complications. And a great thing about all casting types of methods

is that if the Ponseti method doesn't work, there is still plenty of

time to go forward and do the major clubfoot surgery. You really

can't do the major clubfoot surgery and if it didn't work go back and

do the initial Ponseti method.

During the recent clubfoot conference at the U of Iowa, I talked to

two doctors who had switched their manipulation and casting method to

the Ponseti method in the past 1-2 years. They both indicated that

they had personal very sad experiences with the potential risks and

complications of the major clubfoot surgery that made them eager to

try to help other pediatric orthopedists understand and learn about

the Ponseti method.

Again, the treatment that you have described sounds similar to the

Ponseti method and we are glad that Zowie did not need to have the

major clubfoot surgery. We are also glad that your doctor is using

the DBB and hopefully it won't be too much of a transition for you

and your child to get used to it. We are glad to have you here and

hope that you can find support and information that is of help to you

in the continued " non-surgical " treatment of your child.

and (3-17-99)

http://www.vh.org/Patients/IHB/Ortho/Peds/Clubfoot/Egbert.html

> You know I do have something to say about this. Well as you all

know that

> Zowie is not being treated by the Ponseti method and she is doing

just as

> well as all of your kids are. SHe will be graduating to the DBB on

> Wednesday. I feel that any dr will treat our kids with the best of

knowledge

> they have and were trained in. For some reason I feel that when I

come on

> this board all we ever talk about is Dr Ponseti and the Method.

Well I

> myself cannot afford to fly so far to get this treatment and I

think not

> everyone can either. So I think it be fair that persons on this

board should

> not be attacked and told to go to Ponseti. I dont mean to be so

rude or

> anything but it just seems that all everyone here is doing is

telling

> everyone to find someone that knows how to do the Ponseti method

when all in

> all Dr Ponseti himself said our Dr was doing a great job. And yes

alot of

> kids do have to get surgery because as with Zowie needed a tenotomy

and I

> think Dr Ponseti would do those also right? Well in my book that is

the same

> treatment. I do see how Dr Ponseti treats these kids with minimal

casting

> but as with Zowie's experience she has done wonderful with the

castings and

> the surgery was what she and many other children have needed to

correct

> this. Now I do see why you are all giving people good input about

the

> Ponseti method but I dont see why it is sooo important that everone

go seek

> a Dr that practices this. Now there is a Dr in Fairbanks near me

that does

> this and another Dr here in town that was willing to learn the

Ponseti

> method but after speaking with Dr Ponseti myself I felt we were in

good

> hands. So what I guess I am saying is this board is for advice and

we get

> alot of great advice here, but if we cant find a Dr that doesnt

perform the

> Ponseti method we feel as if we are not god enough or that our

children are

> being treated the wrong way and that that is not good enough for

the board

> here. I have posted many messages here and being one of the people

not being

> treated by the Ponseti method I fee I am not getting the response

as if I

> would be getting treated with hi method. And those that are

pregnant with

> babies that have clubbed feet. I feel they should be able to chose

a dr they