Re: New member / tenotomy concerns / Tx referral

[Guest guest]

Hi, and welcome!

My first question is what surgery is this doc talking about? Second, what

is the problem with the tenotomy? If I read this correctly I'm seeing that

the doc wants to operate on the whole foot because he doesn't like the

tenotomy? The tenotomy is a very minor surgical *procedure* which involves

a tiny nick to the Achilies tendon. It does not even require

stitches. This surgery is a part of the non-surgical Ponseti Method and

for nearly all babes is the only surgery they will ever require. 80% of

clubfeet treated with the Ponseti Method require the tenotomy. It really

can make a difference in those feet that need it.

From what I know there are no Ponseti Docs in Texas. Parents have been

known to drive to St. Louis for treatment from Texas because of this. I

would suggest considering your options and finding a Doc who is certified

to treat your son. Regardless of distance. The results of the Ponseti

Method are so good that parents have traveled from across the world to Iowa

to have their child treated rather than to let a doc who doesn't know what

they're doing mess their child's foot up. Incorrect casting can damage the

foot more than just leaving it alone. I don't know exactly how far St.

Louis is from you but it's worth consideration to go there.

Ponseti casting takes 5-7 casts normally, with 9 being the absolute most

for very severe feet. The last cast is the tenotomy cast which stays on

for 3w. How many casts has your son had so far? What kind of casts are

they and what do they look like? Pretty much, the rule is that if it takes

more than 9 casts to obtain full correction the doc is doing something

wrong and you need to move on to one who can help you. I think there may

be some more parents here from TX who may be able to shed some light on

Ponseti Docs in your area. But don't hold out hope for a certified one in

TX because I don't think there are any there (yet). Sorry.

Here's what I would do first if I were you. Take pictures of your son's

feet for Dr. Ponseti and send them to him. He's still in casts right? If

so, then you will want to have the doc take them off and then take the

pics. One each of his feet from front and back with him standing bearing

weight. The one each of the soles. Then a profile view of his foot being

dorsiflexed (push toes up as far as they'll go) as far towards or past L as

it'll go. This series will help Dr. Ponseti consult with you via

email. Don't forget to tell him where you are, what doc you're seeing and

leave your phone number. He occasionally calls instead of replying to

email. If you have pictures of the casting series send those as well.

Please let us know how it goes, we're here to help you get through this

without surgery. You're not the first to have been told surgery is the

only option after failed serial casting. Finding the right doc is

paramount to getting through this without surgery. They're out there, and

they can do wonders for your child's supposedly *so severe, can't be

corrected* feet. unfortunately, there's no room for error with the Ponseti

Method. It's either done correctly and it works or it's modified and it

doesn't. Docs who modify will undoubtedly say it doesn't work for all

CF. Arrogance and ignorance play a big part in this, if a doc refuses to

follow the protocols and decides instead to re-invent the wheel for

whatever reasons (usually arrogance IMO) the results are never as good as

if they SIMPLY followed the guidelines. But if not modified... it does

work. And works quickly and perfectly. Amazing! Who knew following

directions could be so simple?

A nice analogy/testimonial can be found in the Ponseti Uganda (Rwanda?)

Project. ( has more information about this) They trained cast techs

to apply Ponseti casts to CF babes and showed them exactly how to

manipulate the foot for the casting series. These people aren't docs, so

they of course follow the protocols and do exactly what they've been told

to do. They have no reason to do otherwise, no MD arrogance floating

around there... Then the parents are given the FAB (a hand made model any

cobbler shop can find materials for) and told how long and when to have

babe wear it. That's what the parents do. They don't modify the protocols

because apparently they have faith that they're being told the proper way

to help their child so that's what they do. Amazingly enough it is

reported that they have a better than 95% success rate, closer to 100%

actually. If cast techs can correct clubfoot with near 100% success,

there's no reason why docs here in the states can't do it.

Hang in there, it always gets better and you're in the exact right place to

get the help you need. By coming here you've made the best first step to

helping your son's feet. Please tell us more about your son and his

treatment so we can help you find the right doc and get those feet all

corrected and happy without surgery.

Kori

Darbi's Mama

3/28/03 - FAB 12-14hr/d

At 05:39 AM 6/28/2005, you wrote:

>Hi

>My ds is 15 weeks old and has been undergoing serial casting since 4

>weeks of age. His Dr. now wants to do surgery to correct his

>clubfoot. The Dr's. biggest problem with the Ponseti method is the

>tenotomy. I'm concerned about that too. Could someone please help me

>feel comfortable with this. Also, are there any Ponseti doctors in the

>Houston area, or Texas for that matter, that I could consult with?

>

>Thank you for your help. I sure you all know how difficult these

>decisions are.

>

>

>

>

>

>

>

[Guest guest]

Hi, and welcome!

My first question is what surgery is this doc talking about? Second, what

is the problem with the tenotomy? If I read this correctly I'm seeing that

the doc wants to operate on the whole foot because he doesn't like the

tenotomy? The tenotomy is a very minor surgical *procedure* which involves

a tiny nick to the Achilies tendon. It does not even require

stitches. This surgery is a part of the non-surgical Ponseti Method and

for nearly all babes is the only surgery they will ever require. 80% of

clubfeet treated with the Ponseti Method require the tenotomy. It really

can make a difference in those feet that need it.

From what I know there are no Ponseti Docs in Texas. Parents have been

known to drive to St. Louis for treatment from Texas because of this. I

would suggest considering your options and finding a Doc who is certified

to treat your son. Regardless of distance. The results of the Ponseti

Method are so good that parents have traveled from across the world to Iowa

to have their child treated rather than to let a doc who doesn't know what

they're doing mess their child's foot up. Incorrect casting can damage the

foot more than just leaving it alone. I don't know exactly how far St.

Louis is from you but it's worth consideration to go there.

Ponseti casting takes 5-7 casts normally, with 9 being the absolute most

for very severe feet. The last cast is the tenotomy cast which stays on

for 3w. How many casts has your son had so far? What kind of casts are

they and what do they look like? Pretty much, the rule is that if it takes

more than 9 casts to obtain full correction the doc is doing something

wrong and you need to move on to one who can help you. I think there may

be some more parents here from TX who may be able to shed some light on

Ponseti Docs in your area. But don't hold out hope for a certified one in

TX because I don't think there are any there (yet). Sorry.

Here's what I would do first if I were you. Take pictures of your son's

feet for Dr. Ponseti and send them to him. He's still in casts right? If

so, then you will want to have the doc take them off and then take the

pics. One each of his feet from front and back with him standing bearing

weight. The one each of the soles. Then a profile view of his foot being

dorsiflexed (push toes up as far as they'll go) as far towards or past L as

it'll go. This series will help Dr. Ponseti consult with you via

email. Don't forget to tell him where you are, what doc you're seeing and

leave your phone number. He occasionally calls instead of replying to

email. If you have pictures of the casting series send those as well.

Please let us know how it goes, we're here to help you get through this

without surgery. You're not the first to have been told surgery is the

only option after failed serial casting. Finding the right doc is

paramount to getting through this without surgery. They're out there, and

they can do wonders for your child's supposedly *so severe, can't be

corrected* feet. unfortunately, there's no room for error with the Ponseti

Method. It's either done correctly and it works or it's modified and it

doesn't. Docs who modify will undoubtedly say it doesn't work for all

CF. Arrogance and ignorance play a big part in this, if a doc refuses to

follow the protocols and decides instead to re-invent the wheel for

whatever reasons (usually arrogance IMO) the results are never as good as

if they SIMPLY followed the guidelines. But if not modified... it does

work. And works quickly and perfectly. Amazing! Who knew following

directions could be so simple?

A nice analogy/testimonial can be found in the Ponseti Uganda (Rwanda?)

Project. ( has more information about this) They trained cast techs

to apply Ponseti casts to CF babes and showed them exactly how to

manipulate the foot for the casting series. These people aren't docs, so

they of course follow the protocols and do exactly what they've been told

to do. They have no reason to do otherwise, no MD arrogance floating

around there... Then the parents are given the FAB (a hand made model any

cobbler shop can find materials for) and told how long and when to have

babe wear it. That's what the parents do. They don't modify the protocols

because apparently they have faith that they're being told the proper way

to help their child so that's what they do. Amazingly enough it is

reported that they have a better than 95% success rate, closer to 100%

actually. If cast techs can correct clubfoot with near 100% success,

there's no reason why docs here in the states can't do it.

Hang in there, it always gets better and you're in the exact right place to

get the help you need. By coming here you've made the best first step to

helping your son's feet. Please tell us more about your son and his

treatment so we can help you find the right doc and get those feet all

corrected and happy without surgery.

Kori

Darbi's Mama

3/28/03 - FAB 12-14hr/d

At 05:39 AM 6/28/2005, you wrote:

>Hi

>My ds is 15 weeks old and has been undergoing serial casting since 4

>weeks of age. His Dr. now wants to do surgery to correct his

>clubfoot. The Dr's. biggest problem with the Ponseti method is the

>tenotomy. I'm concerned about that too. Could someone please help me

>feel comfortable with this. Also, are there any Ponseti doctors in the

>Houston area, or Texas for that matter, that I could consult with?

>

>Thank you for your help. I sure you all know how difficult these

>decisions are.

>

>

>

>

>

>

>

[Guest guest]

Please forgive me for not being more clear. I am only now

questioning the opinion of my son's Dr. when I should have looked

into other options sooner. Basically our current Dr. doesn't believe

the Ponseti method works. He feels the tenetomy is a terrible thing

to do as he says it doesn't heal as strong as it was. He has also

told me he does 10-12 surgeries a month to correct the feet of

children who have had the Ponseti method.

Our Dr. has been serial casting our son w/ a fiberglass cast. I

don't know exactly what the surgery would be, but I was told 's

cf is moderate to severe.

I feel so ill-equipped to make this decision. I don't want to mess

up my son's foot. Thank you so much for all your help and support.

Sue

> >Hi

> >My ds is 15 weeks old and has been undergoing serial casting since

4

> >weeks of age. His Dr. now wants to do surgery to correct his

> >clubfoot. The Dr's. biggest problem with the Ponseti method is the

> >tenotomy. I'm concerned about that too. Could someone please

help me

> >feel comfortable with this. Also, are there any Ponseti doctors

in the

> >Houston area, or Texas for that matter, that I could consult with?

> >

> >Thank you for your help. I sure you all know how difficult these

> >decisions are.

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

Please forgive me for not being more clear. I am only now

questioning the opinion of my son's Dr. when I should have looked

into other options sooner. Basically our current Dr. doesn't believe

the Ponseti method works. He feels the tenetomy is a terrible thing

to do as he says it doesn't heal as strong as it was. He has also

told me he does 10-12 surgeries a month to correct the feet of

children who have had the Ponseti method.

Our Dr. has been serial casting our son w/ a fiberglass cast. I

don't know exactly what the surgery would be, but I was told 's

cf is moderate to severe.

I feel so ill-equipped to make this decision. I don't want to mess

up my son's foot. Thank you so much for all your help and support.

Sue

> >Hi

> >My ds is 15 weeks old and has been undergoing serial casting since

4

> >weeks of age. His Dr. now wants to do surgery to correct his

> >clubfoot. The Dr's. biggest problem with the Ponseti method is the

> >tenotomy. I'm concerned about that too. Could someone please

help me

> >feel comfortable with this. Also, are there any Ponseti doctors

in the

> >Houston area, or Texas for that matter, that I could consult with?

> >

> >Thank you for your help. I sure you all know how difficult these

> >decisions are.

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

Sue,

I've thought about how to respond to you for a bit and no matter how I try to be

softer in my approach I just can't get around the fact that you NEED to find

another Dr. Period. I've been through several very stressful medical issues

with my daughter since her birth. Aside from the club feet she's had other,

much more serious issues to deal with and the whole thing has been a big

learning experience for me. Once again I've learned that I am the only advocate

for my child that has her best interests at heart with no hidden agenda other

than health and happiness. I find that specialists in general (note there are

exceptions but in general..) are arrogant and unwilling to think that anyone,

including you or other physicians, might know more than they do about their

specialty. This, for me anyway, is a first class ticket out of their office and

on to someone who values me as a contributing member of the treatment team -

after all, I know my child better than they ever will - and that is willing to

listen to and evaluate other thoughts/ideas/treatment options in deciding what

is best for my child.

Now that I've got that off my chest let me say that your physician is not

completely telling the truth. There is no way that he is doing that number of

surgeries on children who have been treated with the true Ponseti method.

Serial casting, yes. The manipulation of bones in sequence and the 90 degree

cast to the thigh and so on - most likely not. Serial casting has been done for

many years outside of the ponseti method. The 'shove em in and hope the stay

that way' philosophy often is used with fiberglass casting. Plaster casts allow

for tiny manipulations and final setting of the foot and therefore is the

preferred method of casting in the Ponseti method. There are other differences

but I won't bore you with that. It's enough to say that your physician doesn't

believe the method works because he is bull headed and arrogant enough to not

want to be trained in the proper method and wants to continue in the manner that

he was trained in whether it is good for all of the children he is treating or

not. Granted there are some occasions where surgery is necessary. Whether it

is the ATTT surgery or a more extensive one, that decision should not come until

you KNOW that the Ponseti method, when used properly, has not been able to help

your child.

I would urge you read as much as you can about the ponseti method so you can

understand better what it is and then I would call other Drs and ask them about

their knowledge of the method and how they follow it. I would also write to Dr.

Ponseti himself to see what he has to say about your sons feet. He can give

you some guidance if he has pictures to go by so be sure and send them in your

email.

Don't fret. You have found a group of parents who are here to support and help

you in your journey. And I'm sure we all can't stress enough your need to get

another opinion - from a ponseti trained physician. (Note that many will say

they are using the method but aren't. You must know what you are talking about

so you can figure out whether they know what they are talking about or not.

Make sense?) Finally let me say that no surgery needs to be done immediately.

You can take the time to research and seek second, third and fourth opinions if

need be. So take a deep breath and take the time you need to find the right

solution for your son. Keep us updated and let us know how things go. I wish

you blessings and peace in your journey.

Chris

Re: New member / tenotomy concerns / Tx referral

Please forgive me for not being more clear. I am only now

questioning the opinion of my son's Dr. when I should have looked

into other options sooner. Basically our current Dr. doesn't believe

the Ponseti method works. He feels the tenetomy is a terrible thing

to do as he says it doesn't heal as strong as it was. He has also

told me he does 10-12 surgeries a month to correct the feet of

children who have had the Ponseti method.

Our Dr. has been serial casting our son w/ a fiberglass cast. I

don't know exactly what the surgery would be, but I was told 's

cf is moderate to severe.

I feel so ill-equipped to make this decision. I don't want to mess

up my son's foot. Thank you so much for all your help and support.

Sue

> >Hi

> >My ds is 15 weeks old and has been undergoing serial casting since

4

> >weeks of age. His Dr. now wants to do surgery to correct his

> >clubfoot. The Dr's. biggest problem with the Ponseti method is the

> >tenotomy. I'm concerned about that too. Could someone please

help me

> >feel comfortable with this. Also, are there any Ponseti doctors

in the

> >Houston area, or Texas for that matter, that I could consult with?

> >

> >Thank you for your help. I sure you all know how difficult these

> >decisions are.

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

Sue,

I've thought about how to respond to you for a bit and no matter how I try to be

softer in my approach I just can't get around the fact that you NEED to find

another Dr. Period. I've been through several very stressful medical issues

with my daughter since her birth. Aside from the club feet she's had other,

much more serious issues to deal with and the whole thing has been a big

learning experience for me. Once again I've learned that I am the only advocate

for my child that has her best interests at heart with no hidden agenda other

than health and happiness. I find that specialists in general (note there are

exceptions but in general..) are arrogant and unwilling to think that anyone,

including you or other physicians, might know more than they do about their

specialty. This, for me anyway, is a first class ticket out of their office and

on to someone who values me as a contributing member of the treatment team -

after all, I know my child better than they ever will - and that is willing to

listen to and evaluate other thoughts/ideas/treatment options in deciding what

is best for my child.

Now that I've got that off my chest let me say that your physician is not

completely telling the truth. There is no way that he is doing that number of

surgeries on children who have been treated with the true Ponseti method.

Serial casting, yes. The manipulation of bones in sequence and the 90 degree

cast to the thigh and so on - most likely not. Serial casting has been done for

many years outside of the ponseti method. The 'shove em in and hope the stay

that way' philosophy often is used with fiberglass casting. Plaster casts allow

for tiny manipulations and final setting of the foot and therefore is the

preferred method of casting in the Ponseti method. There are other differences

but I won't bore you with that. It's enough to say that your physician doesn't

believe the method works because he is bull headed and arrogant enough to not

want to be trained in the proper method and wants to continue in the manner that

he was trained in whether it is good for all of the children he is treating or

not. Granted there are some occasions where surgery is necessary. Whether it

is the ATTT surgery or a more extensive one, that decision should not come until

you KNOW that the Ponseti method, when used properly, has not been able to help

your child.

I would urge you read as much as you can about the ponseti method so you can

understand better what it is and then I would call other Drs and ask them about

their knowledge of the method and how they follow it. I would also write to Dr.

Ponseti himself to see what he has to say about your sons feet. He can give

you some guidance if he has pictures to go by so be sure and send them in your

email.

Don't fret. You have found a group of parents who are here to support and help

you in your journey. And I'm sure we all can't stress enough your need to get

another opinion - from a ponseti trained physician. (Note that many will say

they are using the method but aren't. You must know what you are talking about

so you can figure out whether they know what they are talking about or not.

Make sense?) Finally let me say that no surgery needs to be done immediately.

You can take the time to research and seek second, third and fourth opinions if

need be. So take a deep breath and take the time you need to find the right

solution for your son. Keep us updated and let us know how things go. I wish

you blessings and peace in your journey.

Chris

Re: New member / tenotomy concerns / Tx referral

Please forgive me for not being more clear. I am only now

questioning the opinion of my son's Dr. when I should have looked

into other options sooner. Basically our current Dr. doesn't believe

the Ponseti method works. He feels the tenetomy is a terrible thing

to do as he says it doesn't heal as strong as it was. He has also

told me he does 10-12 surgeries a month to correct the feet of

children who have had the Ponseti method.

Our Dr. has been serial casting our son w/ a fiberglass cast. I

don't know exactly what the surgery would be, but I was told 's

cf is moderate to severe.

I feel so ill-equipped to make this decision. I don't want to mess

up my son's foot. Thank you so much for all your help and support.

Sue

> >Hi

> >My ds is 15 weeks old and has been undergoing serial casting since

4

> >weeks of age. His Dr. now wants to do surgery to correct his

> >clubfoot. The Dr's. biggest problem with the Ponseti method is the

> >tenotomy. I'm concerned about that too. Could someone please

help me

> >feel comfortable with this. Also, are there any Ponseti doctors

in the

> >Houston area, or Texas for that matter, that I could consult with?

> >

> >Thank you for your help. I sure you all know how difficult these

> >decisions are.

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

Sue,

I am new to this group but I would agree. My son was

born with bi-lateral club feet on 06/01/05 in Dallas.

We are going through the Ponsetti treatment with Dr.

Lund and are now on cast number 4. He is not

certified yet but is working on it. Certain things

need to be completed before certification can occur as

I have been told...number of successful patients and

years of performing the Ponsetti process. Since most

treatments take 4 to 5 years to complete. I myself as

a father was very concerned but unlike many others I

myself was born with Club foot. In my opinion surgery

should be the last choice (as I have the scars to

prove this). We chose the Ponsetti treatment because

I believe that it is the right thing to try. In the

event it does not work there are other options that

can be done at a later time.

-Sam-

--- wrote:

> Sue,

> I've thought about how to respond to you for a bit

> and no matter how I try to be softer in my approach

> I just can't get around the fact that you NEED to

> find another Dr. Period. I've been through several

> very stressful medical issues with my daughter since

> her birth. Aside from the club feet she's had

> other, much more serious issues to deal with and the

> whole thing has been a big learning experience for

> me. Once again I've learned that I am the only

> advocate for my child that has her best interests at

> heart with no hidden agenda other than health and

> happiness. I find that specialists in general (note

> there are exceptions but in general..) are arrogant

> and unwilling to think that anyone, including you or

> other physicians, might know more than they do about

> their specialty. This, for me anyway, is a first

> class ticket out of their office and on to someone

> who values me as a contributing member of the

> treatment team - after all, I know my child better

> than they ever will - and that is willing to listen

> to and evaluate other thoughts/ideas/treatment

> options in deciding what is best for my child.

>

> Now that I've got that off my chest let me say that

> your physician is not completely telling the truth.

> There is no way that he is doing that number of

> surgeries on children who have been treated with the

> true Ponseti method. Serial casting, yes. The

> manipulation of bones in sequence and the 90 degree

> cast to the thigh and so on - most likely not.

> Serial casting has been done for many years outside

> of the ponseti method. The 'shove em in and hope

> the stay that way' philosophy often is used with

> fiberglass casting. Plaster casts allow for tiny

> manipulations and final setting of the foot and

> therefore is the preferred method of casting in the

> Ponseti method. There are other differences but I

> won't bore you with that. It's enough to say that

> your physician doesn't believe the method works

> because he is bull headed and arrogant enough to not

> want to be trained in the proper method and wants to

> continue in the manner that he was trained in

> whether it is good for all of the children he is

> treating or not. Granted there are some occasions

> where surgery is necessary. Whether it is the ATTT

> surgery or a more extensive one, that decision

> should not come until you KNOW that the Ponseti

> method, when used properly, has not been able to

> help your child.

>

> I would urge you read as much as you can about the

> ponseti method so you can understand better what it

> is and then I would call other Drs and ask them

> about their knowledge of the method and how they

> follow it. I would also write to Dr. Ponseti

> himself to see what he has to say about your sons

> feet. He can give you some guidance if he has

> pictures to go by so be sure and send them in your

> email.

>

> Don't fret. You have found a group of parents who

> are here to support and help you in your journey.

> And I'm sure we all can't stress enough your need to

> get another opinion - from a ponseti trained

> physician. (Note that many will say they are using

> the method but aren't. You must know what you are

> talking about so you can figure out whether they

> know what they are talking about or not. Make

> sense?) Finally let me say that no surgery needs to

> be done immediately. You can take the time to

> research and seek second, third and fourth opinions

> if need be. So take a deep breath and take the time

> you need to find the right solution for your son.

> Keep us updated and let us know how things go. I

> wish you blessings and peace in your journey.

> Chris

>

> Re: New member /

> tenotomy concerns / Tx referral

>

>

> Please forgive me for not being more clear. I am

> only now

> questioning the opinion of my son's Dr. when I

> should have looked

> into other options sooner. Basically our current

> Dr. doesn't believe

> the Ponseti method works. He feels the tenetomy

> is a terrible thing

> to do as he says it doesn't heal as strong as it

> was. He has also

> told me he does 10-12 surgeries a month to correct

> the feet of

> children who have had the Ponseti method.

>

> Our Dr. has been serial casting our son w/ a

> fiberglass cast. I

> don't know exactly what the surgery would be, but

> I was told 's

> cf is moderate to severe.

>

> I feel so ill-equipped to make this decision. I

> don't want to mess

> up my son's foot. Thank you so much for all your

> help and support.

>

> Sue

>

>

>

>

> > Hi, and welcome!

> >

> > My first question is what surgery is this doc

> talking about?

> Second, what

> > is the problem with the tenotomy? If I read

> this correctly I'm

> seeing that

> > the doc wants to operate on the whole foot

> because he doesn't like

> the

> > tenotomy? The tenotomy is a very minor surgical

> *procedure* which

> involves

> > a tiny nick to the Achilies tendon. It does not

> even require

> > stitches. This surgery is a part of the

> non-surgical Ponseti

> Method and

> > for nearly all babes is the only surgery they

> will ever require.

> 80% of

> > clubfeet treated with the Ponseti Method require

> the tenotomy. It

> really

> > can make a difference in those feet that need

> it.

> >

> > From what I know there are no Ponseti Docs in

> Texas. Parents have

> been

> > known to drive to St. Louis for treatment from

> Texas because of

> this. I

> > would suggest considering your options and

> finding a Doc who is

> certified

> > to treat your son. Regardless of distance. The

> results of the

> Ponseti

> > Method are so good that parents have traveled

> from across the world

> to Iowa

> > to have their child treated rather than to let a

> doc who doesn't

> know what

> > they're doing mess their child's foot up.

> Incorrect casting can

> damage the

> > foot more than just leaving it alone. I don't

> know exactly how far

> St.

> > Louis is from you but it's worth consideration

> to go there.

> >

> > Ponseti casting takes 5-7 casts normally, with 9

> being the absolute

> most

> > for very severe feet. The last cast is the

> tenotomy cast which

> stays on

> > for 3w. How many casts has your son had so far?

> What kind of

> casts are

> > they and what do they look like? Pretty much,

> the rule is that if

> it takes

> > more than 9 casts to obtain full correction the

> doc is doing

> something

> > wrong and you need to move on to one who can

> help you. I think

> there may

> > be some more parents here from TX who may be

> able to shed some

> light on

> > Ponseti Docs in your area. But don't hold out

> hope for a certified

> one in

> > TX because I don't think there are any there

> (yet). Sorry.

> >

> > Here's what I would do first if I were you.

> Take

=== message truncated ===

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Sue,

I am new to this group but I would agree. My son was

born with bi-lateral club feet on 06/01/05 in Dallas.

We are going through the Ponsetti treatment with Dr.

Lund and are now on cast number 4. He is not

certified yet but is working on it. Certain things

need to be completed before certification can occur as

I have been told...number of successful patients and

years of performing the Ponsetti process. Since most

treatments take 4 to 5 years to complete. I myself as

a father was very concerned but unlike many others I

myself was born with Club foot. In my opinion surgery

should be the last choice (as I have the scars to

prove this). We chose the Ponsetti treatment because

I believe that it is the right thing to try. In the

event it does not work there are other options that

can be done at a later time.

-Sam-

--- wrote:

> Sue,

> I've thought about how to respond to you for a bit

> and no matter how I try to be softer in my approach

> I just can't get around the fact that you NEED to

> find another Dr. Period. I've been through several

> very stressful medical issues with my daughter since

> her birth. Aside from the club feet she's had

> other, much more serious issues to deal with and the

> whole thing has been a big learning experience for

> me. Once again I've learned that I am the only

> advocate for my child that has her best interests at

> heart with no hidden agenda other than health and

> happiness. I find that specialists in general (note

> there are exceptions but in general..) are arrogant

> and unwilling to think that anyone, including you or

> other physicians, might know more than they do about

> their specialty. This, for me anyway, is a first

> class ticket out of their office and on to someone

> who values me as a contributing member of the

> treatment team - after all, I know my child better

> than they ever will - and that is willing to listen

> to and evaluate other thoughts/ideas/treatment

> options in deciding what is best for my child.

>

> Now that I've got that off my chest let me say that

> your physician is not completely telling the truth.

> There is no way that he is doing that number of

> surgeries on children who have been treated with the

> true Ponseti method. Serial casting, yes. The

> manipulation of bones in sequence and the 90 degree

> cast to the thigh and so on - most likely not.

> Serial casting has been done for many years outside

> of the ponseti method. The 'shove em in and hope

> the stay that way' philosophy often is used with

> fiberglass casting. Plaster casts allow for tiny

> manipulations and final setting of the foot and

> therefore is the preferred method of casting in the

> Ponseti method. There are other differences but I

> won't bore you with that. It's enough to say that

> your physician doesn't believe the method works

> because he is bull headed and arrogant enough to not

> want to be trained in the proper method and wants to

> continue in the manner that he was trained in

> whether it is good for all of the children he is

> treating or not. Granted there are some occasions

> where surgery is necessary. Whether it is the ATTT

> surgery or a more extensive one, that decision

> should not come until you KNOW that the Ponseti

> method, when used properly, has not been able to

> help your child.

>

> I would urge you read as much as you can about the

> ponseti method so you can understand better what it

> is and then I would call other Drs and ask them

> about their knowledge of the method and how they

> follow it. I would also write to Dr. Ponseti

> himself to see what he has to say about your sons

> feet. He can give you some guidance if he has

> pictures to go by so be sure and send them in your

> email.

>

> Don't fret. You have found a group of parents who

> are here to support and help you in your journey.

> And I'm sure we all can't stress enough your need to

> get another opinion - from a ponseti trained

> physician. (Note that many will say they are using

> the method but aren't. You must know what you are

> talking about so you can figure out whether they

> know what they are talking about or not. Make

> sense?) Finally let me say that no surgery needs to

> be done immediately. You can take the time to

> research and seek second, third and fourth opinions

> if need be. So take a deep breath and take the time

> you need to find the right solution for your son.

> Keep us updated and let us know how things go. I

> wish you blessings and peace in your journey.

> Chris

>

> Re: New member /

> tenotomy concerns / Tx referral

>

>

> Please forgive me for not being more clear. I am

> only now

> questioning the opinion of my son's Dr. when I

> should have looked

> into other options sooner. Basically our current

> Dr. doesn't believe

> the Ponseti method works. He feels the tenetomy

> is a terrible thing

> to do as he says it doesn't heal as strong as it

> was. He has also

> told me he does 10-12 surgeries a month to correct

> the feet of

> children who have had the Ponseti method.

>

> Our Dr. has been serial casting our son w/ a

> fiberglass cast. I

> don't know exactly what the surgery would be, but

> I was told 's

> cf is moderate to severe.

>

> I feel so ill-equipped to make this decision. I

> don't want to mess

> up my son's foot. Thank you so much for all your

> help and support.

>

> Sue

>

>

>

>

> > Hi, and welcome!

> >

> > My first question is what surgery is this doc

> talking about?

> Second, what

> > is the problem with the tenotomy? If I read

> this correctly I'm

> seeing that

> > the doc wants to operate on the whole foot

> because he doesn't like

> the

> > tenotomy? The tenotomy is a very minor surgical

> *procedure* which

> involves

> > a tiny nick to the Achilies tendon. It does not

> even require

> > stitches. This surgery is a part of the

> non-surgical Ponseti

> Method and

> > for nearly all babes is the only surgery they

> will ever require.

> 80% of

> > clubfeet treated with the Ponseti Method require

> the tenotomy. It

> really

> > can make a difference in those feet that need

> it.

> >

> > From what I know there are no Ponseti Docs in

> Texas. Parents have

> been

> > known to drive to St. Louis for treatment from

> Texas because of

> this. I

> > would suggest considering your options and

> finding a Doc who is

> certified

> > to treat your son. Regardless of distance. The

> results of the

> Ponseti

> > Method are so good that parents have traveled

> from across the world

> to Iowa

> > to have their child treated rather than to let a

> doc who doesn't

> know what

> > they're doing mess their child's foot up.

> Incorrect casting can

> damage the

> > foot more than just leaving it alone. I don't

> know exactly how far

> St.

> > Louis is from you but it's worth consideration

> to go there.

> >

> > Ponseti casting takes 5-7 casts normally, with 9

> being the absolute

> most

> > for very severe feet. The last cast is the

> tenotomy cast which

> stays on

> > for 3w. How many casts has your son had so far?

> What kind of

> casts are

> > they and what do they look like? Pretty much,

> the rule is that if

> it takes

> > more than 9 casts to obtain full correction the

> doc is doing

> something

> > wrong and you need to move on to one who can

> help you. I think

> there may

> > be some more parents here from TX who may be

> able to shed some

> light on

> > Ponseti Docs in your area. But don't hold out

> hope for a certified

> one in

> > TX because I don't think there are any there

> (yet). Sorry.

> >

> > Here's what I would do first if I were you.

> Take

=== message truncated ===

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Sue,

Let me also state that a tenotomy, a very simple surgery that doesn't phase them

at all, is necessary in many cases no matter how they are treated. They heal in

three weeks and you'd never know they'd had that small nick in their heel.

However, my statements regarding surgery are for the other, more invasive ones

that are rarely needed on a true ponseti treated child. Does that make it

clearer? I reread what I wrote after posting and thought I should clarify that.

Chris

Re: New member / tenotomy concerns / Tx

referral

Please forgive me for not being more clear. I am only now

questioning the opinion of my son's Dr. when I should have looked

into other options sooner. Basically our current Dr. doesn't believe

the Ponseti method works. He feels the tenetomy is a terrible thing

to do as he says it doesn't heal as strong as it was. He has also

told me he does 10-12 surgeries a month to correct the feet of

children who have had the Ponseti method.

Our Dr. has been serial casting our son w/ a fiberglass cast. I

don't know exactly what the surgery would be, but I was told 's

cf is moderate to severe.

I feel so ill-equipped to make this decision. I don't want to mess

up my son's foot. Thank you so much for all your help and support.

Sue

> >Hi

> >My ds is 15 weeks old and has been undergoing serial casting since

4

> >weeks of age. His Dr. now wants to do surgery to correct his

> >clubfoot. The Dr's. biggest problem with the Ponseti method is the

> >tenotomy. I'm concerned about that too. Could someone please

help me

> >feel comfortable with this. Also, are there any Ponseti doctors

in the

> >Houston area, or Texas for that matter, that I could consult with?

> >

> >Thank you for your help. I sure you all know how difficult these

> >decisions are.

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

Sue,

Let me also state that a tenotomy, a very simple surgery that doesn't phase them

at all, is necessary in many cases no matter how they are treated. They heal in

three weeks and you'd never know they'd had that small nick in their heel.

However, my statements regarding surgery are for the other, more invasive ones

that are rarely needed on a true ponseti treated child. Does that make it

clearer? I reread what I wrote after posting and thought I should clarify that.

Chris

Re: New member / tenotomy concerns / Tx

referral

Please forgive me for not being more clear. I am only now

questioning the opinion of my son's Dr. when I should have looked

into other options sooner. Basically our current Dr. doesn't believe

the Ponseti method works. He feels the tenetomy is a terrible thing

to do as he says it doesn't heal as strong as it was. He has also

told me he does 10-12 surgeries a month to correct the feet of

children who have had the Ponseti method.

Our Dr. has been serial casting our son w/ a fiberglass cast. I

don't know exactly what the surgery would be, but I was told 's

cf is moderate to severe.

I feel so ill-equipped to make this decision. I don't want to mess

up my son's foot. Thank you so much for all your help and support.

Sue

> >Hi

> >My ds is 15 weeks old and has been undergoing serial casting since

4

> >weeks of age. His Dr. now wants to do surgery to correct his

> >clubfoot. The Dr's. biggest problem with the Ponseti method is the

> >tenotomy. I'm concerned about that too. Could someone please

help me

> >feel comfortable with this. Also, are there any Ponseti doctors

in the

> >Houston area, or Texas for that matter, that I could consult with?

> >

> >Thank you for your help. I sure you all know how difficult these

> >decisions are.

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

Welcome, Sue and !

We're so glad you found our group! You wrote that you felt " ill-

equipped " to make decisions about your son's treatment. Well, we're

here to help you educate yourself so that you will be able to make

decisions about 's treatment with confidence and peace of

mind. Sound good?

The first place to start, is Dr. P's website and I assume you've

been there. Next, is the Global HELP booklet (send a copy to your

current doctor too! =) ).

There are a ton of links and files and pictures on this group's

site. Then look here too:

http://members.tripod.com/ponseti_links-ivil/

I know there are a couple of Doctors in Texas who are using the

method but not listed on Dr. P's list.

Here's a link to a recent message about ish Rite

http://health.groups.yahoo.com/group/nosurgery4clubfoot/message/35787

I know that Jen Hundley takes her son, Aidan, to a doctor in TX too-

I think in San . Hopefully she'll see your note and respond.

There was a doctor in Lubbock, but he moved to New York state I

believe.

About the tenotomy- educate yourself about the procedure and you'll

become more comfortable with it. Honestly, your doctor is probably

very poorly educated about the " true " Ponseti method. The tenotomy

is so very *minor* in comparison to the reconstructive surgeries

that your doctor is referring to. If his big complaint is a weak

Achilles, what exactly does he expect from a foot that has had many

tendons and bones completely moved and re-attached versus one that

has been " nicked " to allow it to lengthen (fyi-it's documented that

it regenerates itself in the infant's foot versus an adult)? There

is a tiny amount of scar tissue from a percutaneous tenotomy versus

much more in a surgically re-constructed foot. Further, Dr. Ponseti

has long-term follow-up studies on his patients. Documented proof

that people in their 20's-40's have no functional issues with their

feet. If the U of Iowa saw instances of people having issues with

their Achilles' based on these long term studies, then they would be

telling all of us parents now to limit our children's

activities......which they don't. They tell us to let our kids be

kids. My daughter is 5 and she and the other kids on this list who

are " older " do all kinds of fun things- ride bikes, take ballet,

play soccer, jump off the stairs, etc!

I hope this alleviates some of your fears about the procedure-

please ask more questions if you want!

Regarding your doctor's statement about the kids that he's operating

on....I can only fathom two situations that would make that true-

1) he is referring to general " serial casting " as the Ponseti

method. The U of Iowa has nearly a 100% success rate in correcting

clubfeet now that they understand the " a-typical foot " better- they

have not conducted a PMR procedure on an infant there in years

according to Dr. Morcuende. There is no way that if the procedure

is used correctly, that he is having to operate on 10 or more kids

per month. 10 in a year would be a lot!

2) the doctor(s) who initially treated the children using the P

method to correct the feet prior to your doctor treating the child

is not following proper post-correction bracing protocol and

therefore the feet are relapsing....then your doctor is fixing the

relapses with surgery. (which may not be necessary either)

Another thing about the Ponseti method- I am not a doctor, and I

know nothing about medical training, but from what I understand from

talking to Dr. P is that the method is very basic in that the doctor

must understand the anatomy of the infant's foot and move the bones

in the correct order to achieve correction.....however, it takes a

certain " finesse " if you will to feel the bones and get it just

right and some doctors *just don't get it*. Dr. P once told me that

female doctors have a tendency to pick up on it very quickly because

their fingers are typically smaller and they have an easier time

feeling the tiny bones. But I digress....email me off-line if you

want to read my personal observations about why some doctors just

are stuck in the mindset that the method doesn't work. =)

We're here to tell you that it does. There are hundreds of families

here to give you their own personal family stories and there are

documented medical studies to show that it's a fact.

The hard part for you will be finding time to educate yourself about

what the method " is " and " is not " and then finding a doctor to treat

your son.

Welcome aboard- we look forward to hearing more from you!

&

3-16-00, left clubfoot

switched to Ponseti method at 4 mo. old

http://ponseticlubfoot.freeservers.com/

[Guest guest]

Welcome, Sue and !

We're so glad you found our group! You wrote that you felt " ill-

equipped " to make decisions about your son's treatment. Well, we're

here to help you educate yourself so that you will be able to make

decisions about 's treatment with confidence and peace of

mind. Sound good?

The first place to start, is Dr. P's website and I assume you've

been there. Next, is the Global HELP booklet (send a copy to your

current doctor too! =) ).

There are a ton of links and files and pictures on this group's

site. Then look here too:

http://members.tripod.com/ponseti_links-ivil/

I know there are a couple of Doctors in Texas who are using the

method but not listed on Dr. P's list.

Here's a link to a recent message about ish Rite

http://health.groups.yahoo.com/group/nosurgery4clubfoot/message/35787

I know that Jen Hundley takes her son, Aidan, to a doctor in TX too-

I think in San . Hopefully she'll see your note and respond.

There was a doctor in Lubbock, but he moved to New York state I

believe.

About the tenotomy- educate yourself about the procedure and you'll

become more comfortable with it. Honestly, your doctor is probably

very poorly educated about the " true " Ponseti method. The tenotomy

is so very *minor* in comparison to the reconstructive surgeries

that your doctor is referring to. If his big complaint is a weak

Achilles, what exactly does he expect from a foot that has had many

tendons and bones completely moved and re-attached versus one that

has been " nicked " to allow it to lengthen (fyi-it's documented that

it regenerates itself in the infant's foot versus an adult)? There

is a tiny amount of scar tissue from a percutaneous tenotomy versus

much more in a surgically re-constructed foot. Further, Dr. Ponseti

has long-term follow-up studies on his patients. Documented proof

that people in their 20's-40's have no functional issues with their

feet. If the U of Iowa saw instances of people having issues with

their Achilles' based on these long term studies, then they would be

telling all of us parents now to limit our children's

activities......which they don't. They tell us to let our kids be

kids. My daughter is 5 and she and the other kids on this list who

are " older " do all kinds of fun things- ride bikes, take ballet,

play soccer, jump off the stairs, etc!

I hope this alleviates some of your fears about the procedure-

please ask more questions if you want!

Regarding your doctor's statement about the kids that he's operating

on....I can only fathom two situations that would make that true-

1) he is referring to general " serial casting " as the Ponseti

method. The U of Iowa has nearly a 100% success rate in correcting

clubfeet now that they understand the " a-typical foot " better- they

have not conducted a PMR procedure on an infant there in years

according to Dr. Morcuende. There is no way that if the procedure

is used correctly, that he is having to operate on 10 or more kids

per month. 10 in a year would be a lot!

2) the doctor(s) who initially treated the children using the P

method to correct the feet prior to your doctor treating the child

is not following proper post-correction bracing protocol and

therefore the feet are relapsing....then your doctor is fixing the

relapses with surgery. (which may not be necessary either)

Another thing about the Ponseti method- I am not a doctor, and I

know nothing about medical training, but from what I understand from

talking to Dr. P is that the method is very basic in that the doctor

must understand the anatomy of the infant's foot and move the bones

in the correct order to achieve correction.....however, it takes a

certain " finesse " if you will to feel the bones and get it just

right and some doctors *just don't get it*. Dr. P once told me that

female doctors have a tendency to pick up on it very quickly because

their fingers are typically smaller and they have an easier time

feeling the tiny bones. But I digress....email me off-line if you

want to read my personal observations about why some doctors just

are stuck in the mindset that the method doesn't work. =)

We're here to tell you that it does. There are hundreds of families

here to give you their own personal family stories and there are

documented medical studies to show that it's a fact.

The hard part for you will be finding time to educate yourself about

what the method " is " and " is not " and then finding a doctor to treat

your son.

Welcome aboard- we look forward to hearing more from you!

&

3-16-00, left clubfoot

switched to Ponseti method at 4 mo. old

http://ponseticlubfoot.freeservers.com/

[Guest guest]

just wanted to say 'hear, hear!'.. great post.. you said it well!

and Claire

[Guest guest]

just wanted to say 'hear, hear!'.. great post.. you said it well!

and Claire