Re: Re: 7 MONTHS AND ....--Please seek Dr. Ponseti's advice first!

July 6, 2006

Hello! Please, please, please do seek Dr. Ponseti's advice first before going

into that third surgery. My son JM was due for a second surgery when we found

Dr. Ponseti's method and sought his advice. My son is 5 years old. He underwent

casting under Dr. Aguilar here in the Philippines and never needed another

surgery because of the Ponseti method.

jennyandkelly wrote:

Welcome to the group. I'm sorry that your son's journey to

corrected feet has been so difficult! I hope that you will feel a

bit of reassurance in knowing that Dr. Ignacio Ponseti at the

University of Iowa is the world's leading authority on clubfoot and

he will be able to help your son.

Can you tell us who your current doctor is? I would highly

recommend that you seek out the advice of Dr. Ponseti before

consenting to this third surgery. I'm not sure where you're

located, but we can give you advice on getting to Iowa City to see

Dr. Ponseti in person if you're interested.

You can start by emailing him pictures of your son's feet and a

description of his treatment and surgeries thus far.

Have you been to Dr. Ponseti's website at all?

Hang in there, we're here to help you any way we can!

Regards,

& (3-16-00, lcf)

http://ponseticlubfoot.freeservers.com/

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

>

> My son is 7 months old. He was born with a severe case of club

> foot. We did the serial casting starting when he was 2 days old.

> We did that for approximately 12 weeks. At that time he had his

> first tendon lengthening surgery. After surgery, he was casted

for

> the 3 week period and then we were told he needed the orthopedic

> shoes. We tried the shoes for 12 more weeks. They kept falling

off

> and they weren't doing what they were supposed to do, they weren't

> correcting his foot. So the doctor said we needed to do another

> tendon lengthening surgery (this one they lengthened the tendon

that

> elongated the big toe). After surgery he was casted for 2 weeks.

> After those casts came off, the foot still wasn't coming up (to a

> right angle), so we are back to casting weekly. Our most recent

> appointment was the Monday before the 4th of July and the doctor

> said that the casting isn't giving the results that he had hoped

> for, so we may have to do a third tendon lengthening

surgery....this

> time on the peroneus longus tendon. I'm starting to wonder how

many

> more of these surgeries we are going to have to go through. I've

> tried to find other information on the web, but there is so much

> that is not known about this deformity.

> Anyone have any reassuring input/advice?

>

---------------------------------

Want to be your own boss? Learn how on Yahoo! Small Business.

July 7, 2006

Dr. Von Stein is wonderful. She is great with , and looks him over really

well when we go. He has some other issues, so she checks him out for things

that could pop up as he grows (other than the clubfeet). The one thing I didn't

like was that she scheduled his follow-ups a year apart after the initial 3

month period. I don't know if this is standard for her or on a case by case

basis. has alot of other dr. appt. and we traveled 2 1/2 hours, so I

don't know if this factored in or not. We did not go through casting with her,

so I can' help there, but I know others can.

11/19/04

twister22277 wrote:

I actually found Dr. Ponseti's website tonight and emailed him my

concerns. I am hoping to get a reply tomorrow? If I don't hear

from him, I am planning to get a second opinion from Dr. Armstrong

in Cleveland or Dr. VonStein in Cincinnati, Ohio. I found their

names on Dr. Ponseti's website also. Does anyone have any

experience with either of these docs?

> >

> > My son is 7 months old. He was born with a severe case of club

> > foot. We did the serial casting starting when he was 2 days

old.

> > We did that for approximately 12 weeks. At that time he had

his

> > first tendon lengthening surgery. After surgery, he was casted

> for

> > the 3 week period and then we were told he needed the

orthopedic

> > shoes. We tried the shoes for 12 more weeks. They kept

falling

> off

> > and they weren't doing what they were supposed to do, they

weren't

> > correcting his foot. So the doctor said we needed to do

another

> > tendon lengthening surgery (this one they lengthened the tendon

> that

> > elongated the big toe). After surgery he was casted for 2

weeks.

> > After those casts came off, the foot still wasn't coming up (to

a

> > right angle), so we are back to casting weekly. Our most

recent

> > appointment was the Monday before the 4th of July and the

doctor

> > said that the casting isn't giving the results that he had

hoped

> > for, so we may have to do a third tendon lengthening

> surgery....this

> > time on the peroneus longus tendon. I'm starting to wonder how

> many

> > more of these surgeries we are going to have to go through.

I've

> > tried to find other information on the web, but there is so

much

> > that is not known about this deformity.

> > Anyone have any reassuring input/advice?

> >

>

> ---------------------------------

> Want to be your own boss? Learn how on Yahoo! Small Business.

>

July 7, 2006

We have been very happy with Dr. Von Stein. She is Kelsey's second ortho as

well. She was excellent with Kelsey through casting, the tenotomy and all

follow up. She is very thorough. She is also very respectful of Dr. Ponseti

so I do not think she would have a problem consulting with him. I would

definitely email him though because I know he will be able to best guide you.

I agree with what said above.

wrote:

Hi ,

I was just getting ready to send you Dr. P's email address but I see

you found it already. I'm so glad you are looking into this to get a

second opinion.

It sounds like you've been having a really tough time, and while your

doctor may be practicing the Ponseti method it could well be that he

is either altering some key piece of the method or he is simply not

quite experienced enough to handle your son's case. The Ponseti

method is not something that can really be learned and put to use by

just attending a seminar. That's the foundation, but it actually

takes practice and in some cases just a lot of experience to handle a

difficult foot.

I hear nothing but good things about Dr. VonStein in Cincinnati, I'm

sure some of the other parents will pop in with their experiences. A

couple things to consider, I believe Dr. VonStein is quite good and

absolutely knows how to correct a difficult clubfoot. The one thing

that I think you should discuss with Dr. Ponseti is the 2nd surgery

that your son had. This I believe could play a part in whether or not

he feels that Dr. VonStein would be the right choice for your little

one -- and someone who knows more about Dr. VS can chime in here --

sometimes when surgery has been involved, it may be better to go

directly to Dr. Ponseti himself, but like I said, he will tell you the

best course of action, he'll give you the straight scoop. Did you

send him pictures along with the email? You may expect to hear back

from him as early as tomorrow, or Monday, probably, he usually

responds within a couple days.

Also, you were asking about 's comment about the number of

casts; the foot/feet are normally corrected with 4-6 casts. 7-9 could

be needed for a more difficult foot. 12 is really the outside of

*normal* if the foot is exceedingly difficult. If you start getting

to the 7,8,9 range and the foot is not getting corrected it is time to

start looking for another opinion. How do you know when the foot is

corrected? It looks just like any other baby foot, sometimes a few

extra wrinkles around the ankle area, but other than that it should

look totally normal and be turned outward (abducted) about 70 degrees.

HTH,

Mom to Jenna (4/7/01) & Sammy (9/25/04, RCF, Dobbs' brace, 12hrs/day)

> > >

> > > My son is 7 months old. He was born with a severe case of club

> > > foot. We did the serial casting starting when he was 2 days

> old.

> > > We did that for approximately 12 weeks. At that time he had

> his

> > > first tendon lengthening surgery. After surgery, he was casted

> > for

> > > the 3 week period and then we were told he needed the

> orthopedic

> > > shoes. We tried the shoes for 12 more weeks. They kept

> falling

> > off

> > > and they weren't doing what they were supposed to do, they

> weren't

> > > correcting his foot. So the doctor said we needed to do

> another

> > > tendon lengthening surgery (this one they lengthened the tendon

> > that

> > > elongated the big toe). After surgery he was casted for 2

> weeks.

> > > After those casts came off, the foot still wasn't coming up (to

> a

> > > right angle), so we are back to casting weekly. Our most

> recent

> > > appointment was the Monday before the 4th of July and the

> doctor

> > > said that the casting isn't giving the results that he had

> hoped

> > > for, so we may have to do a third tendon lengthening

> > surgery....this

> > > time on the peroneus longus tendon. I'm starting to wonder how

> > many

> > > more of these surgeries we are going to have to go through.

> I've

> > > tried to find other information on the web, but there is so

> much

> > > that is not known about this deformity.

> > > Anyone have any reassuring input/advice?

> > >

> >

> > ---------------------------------

> > Want to be your own boss? Learn how on Yahoo! Small Business.

> >

July 7, 2006

Thank you for sharing your experience with Dr. VS.

I am so thankful for this board. I really feel that if I hadn't found it,

that I would have put my son through more unneccesary surgery(ies). I just

hope that I haven't waited too long already!

--- JGOODIN wrote:

> > > > > > > > > > > > > >

> > >

>

> Dr. Von Stein is wonderful. She is great with , and looks him over

really well when we go. He has some other issues, so she checks him out for

things that could pop up as he grows (other than the clubfeet). The one

thing I didn't like was that she scheduled his follow-ups a year apart after

the initial 3 month period. I don't know if this is standard for her or on a

case by case basis. has alot of other dr. appt. and we traveled 2 1/2

hours, so I don't know if this factored in or not. We did not go through

casting with her, so I can' help there, but I know others can.

> >

> > 11/19/04

> >

> > twister22277 wrote:

> > I actually found Dr. Ponseti's website tonight and emailed him

my

> > concerns. I am hoping to get a reply tomorrow? If I don't hear

> > from him, I am planning to get a second opinion from Dr. Armstrong

> > in Cleveland or Dr. VonStein in Cincinnati, Ohio. I found their

> > names on Dr. Ponseti's website also. Does anyone have any

> > experience with either of these docs?

> >

> > > >

> > > > My son is 7 months old. He was born with a severe case of club

> > > > foot. We did the serial casting starting when he was 2 days

> > old.

> > > > We did that for approximately 12 weeks. At that time he had

> > his

> > > > first tendon lengthening surgery. After surgery, he was casted

> > > for

> > > > the 3 week period and then we were told he needed the

> > orthopedic

> > > > shoes. We tried the shoes for 12 more weeks. They kept

> > falling

> > > off

> > > > and they weren't doing what they were supposed to do, they

> > weren't

> > > > correcting his foot. So the doctor said we needed to do

> > another

> > > > tendon lengthening surgery (this one they lengthened the tendon

> > > that

> > > > elongated the big toe). After surgery he was casted for 2

> > weeks.

> > > > After those casts came off, the foot still wasn't coming up (to

> > a

> > > > right angle), so we are back to casting weekly. Our most

> > recent

> > > > appointment was the Monday before the 4th of July and the

> > doctor

> > > > said that the casting isn't giving the results that he had

> > hoped

> > > > for, so we may have to do a third tendon lengthening

> > > surgery....this

> > > > time on the peroneus longus tendon. I'm starting to wonder how

> > > many

> > > > more of these surgeries we are going to have to go through.

> > I've

> > > > tried to find other information on the web, but there is so

> > much

> > > > that is not known about this deformity.

> > > > Anyone have any reassuring input/advice?

> > > >

> > >

> > > ---------------------------------

> > > Want to be your own boss? Learn how on Yahoo! Small Business.

> > >

July 7, 2006

I just wanted to update everyone that I did hear back from Dr. Ponseti this

morning. He has requested that I send him photos of Dino's feet and then he

can tell us what course of action to take next.

Thank you so much again!

--- Jenni Cypher wrote:

> > > > > > > > > > > > > >

> > >

>

> We have been very happy with Dr. Von Stein. She is Kelsey's second ortho

as well. She was excellent with Kelsey through casting, the tenotomy and

all follow up. She is very thorough. She is also very respectful of Dr.

Ponseti so I do not think she would have a problem consulting with him. I

would definitely email him though because I know he will be able to best

guide you. I agree with what said above.

> >

> > wrote:

Hi ,

> > I was just getting ready to send you Dr. P's email address but I see

> > you found it already. I'm so glad you are looking into this to get a

> > second opinion.

> > It sounds like you've been having a really tough time, and while your

> > doctor may be practicing the Ponseti method it could well be that he

> > is either altering some key piece of the method or he is simply not

> > quite experienced enough to handle your son's case. The Ponseti

> > method is not something that can really be learned and put to use by

> > just attending a seminar. That's the foundation, but it actually

> > takes practice and in some cases just a lot of experience to handle a

> > difficult foot.

> > I hear nothing but good things about Dr. VonStein in Cincinnati, I'm

> > sure some of the other parents will pop in with their experiences. A

> > couple things to consider, I believe Dr. VonStein is quite good and

> > absolutely knows how to correct a difficult clubfoot. The one thing

> > that I think you should discuss with Dr. Ponseti is the 2nd surgery

> > that your son had. This I believe could play a part in whether or not

> > he feels that Dr. VonStein would be the right choice for your little

> > one -- and someone who knows more about Dr. VS can chime in here --

> > sometimes when surgery has been involved, it may be better to go

> > directly to Dr. Ponseti himself, but like I said, he will tell you the

> > best course of action, he'll give you the straight scoop. Did you

> > send him pictures along with the email? You may expect to hear back

> > from him as early as tomorrow, or Monday, probably, he usually

> > responds within a couple days.

> > Also, you were asking about 's comment about the number of

> > casts; the foot/feet are normally corrected with 4-6 casts. 7-9 could

> > be needed for a more difficult foot. 12 is really the outside of

> > *normal* if the foot is exceedingly difficult. If you start getting

> > to the 7,8,9 range and the foot is not getting corrected it is time to

> > start looking for another opinion. How do you know when the foot is

> > corrected? It looks just like any other baby foot, sometimes a few

> > extra wrinkles around the ankle area, but other than that it should

> > look totally normal and be turned outward (abducted) about 70 degrees.

> >

> > HTH,

> >

> > Mom to Jenna (4/7/01) & Sammy (9/25/04, RCF, Dobbs' brace, 12hrs/day)

> >

> > > > >

> > > > > My son is 7 months old. He was born with a severe case of club

> > > > > foot. We did the serial casting starting when he was 2 days

> > > old.

> > > > > We did that for approximately 12 weeks. At that time he had

> > > his

> > > > > first tendon lengthening surgery. After surgery, he was casted

> > > > for

> > > > > the 3 week period and then we were told he needed the

> > > orthopedic

> > > > > shoes. We tried the shoes for 12 more weeks. They kept

> > > falling

> > > > off

> > > > > and they weren't doing what they were supposed to do, they

> > > weren't

> > > > > correcting his foot. So the doctor said we needed to do

> > > another

> > > > > tendon lengthening surgery (this one they lengthened the tendon

> > > > that

> > > > > elongated the big toe). After surgery he was casted for 2

> > > weeks.

> > > > > After those casts came off, the foot still wasn't coming up (to

> > > a

> > > > > right angle), so we are back to casting weekly. Our most

> > > recent

> > > > > appointment was the Monday before the 4th of July and the

> > > doctor

> > > > > said that the casting isn't giving the results that he had

> > > hoped

> > > > > for, so we may have to do a third tendon lengthening

> > > > surgery....this

> > > > > time on the peroneus longus tendon. I'm starting to wonder how

> > > > many

> > > > > more of these surgeries we are going to have to go through.

> > > I've

> > > > > tried to find other information on the web, but there is so

> > > much

> > > > > that is not known about this deformity.

> > > > > Anyone have any reassuring input/advice?

> > > > >

> > > >

> > > > ---------------------------------

> > > > Want to be your own boss? Learn how on Yahoo! Small Business.

> > > >

July 7, 2006

I believe we talked with the nurse, it was at the time, but don't know if

that has changed, to schedule our appt. She was very helpful. You could try

the receptionist and if they don't have anything soon, then call the nurse and

explain you situation.

jennyandkelly wrote:

That's great! Just take the pictures like Kori noted in her earlier

email to you. It might also help to note where the incisions are

from his last surgery if you don't know the details on exactly what

was done. Dr. Ponseti might be able to guess if he knows where they

are.

In the meantime, you might want to call and talk to a nurse at Dr.

VonStein's office to determine what the earliest date would be that

they can see you. You can always cancel the appointment if you

decide to go to Iowa of course. (I say talk to a nurse because the

regular receptionists might not try to work you in early...maybe

some of Dr. VonStein's families could chime in with ideas here).

Good luck and keep us posted!

>

> I just wanted to update everyone that I did hear back from Dr.

Ponseti this

> morning. He has requested that I send him photos of Dino's feet

and then he

> can tell us what course of action to take next.

> Thank you so much again!

July 7, 2006

Definitely talk to her nurse. If you make an appointment through the

call center, they do not really understand what they are dealing with. If you

do get the call center, INSIST that the appointment be with Dr. Von Stein as

she is the only doctor there practicing Ponseti method.

Jenni

jennyandkelly wrote:

That's great! Just take the pictures like Kori noted in her earlier

email to you. It might also help to note where the incisions are

from his last surgery if you don't know the details on exactly what

was done. Dr. Ponseti might be able to guess if he knows where they

are.

In the meantime, you might want to call and talk to a nurse at Dr.

VonStein's office to determine what the earliest date would be that

they can see you. You can always cancel the appointment if you

decide to go to Iowa of course. (I say talk to a nurse because the

regular receptionists might not try to work you in early...maybe

some of Dr. VonStein's families could chime in with ideas here).

Good luck and keep us posted!

>

> I just wanted to update everyone that I did hear back from Dr.

Ponseti this

> morning. He has requested that I send him photos of Dino's feet

and then he

> can tell us what course of action to take next.

> Thank you so much again!

Jenni-

Mom to (10/31/01) and Kelsey (11/7/03)happy girl in FAB nights only for

left clubfoot.

__________________________________________________

July 7, 2006

Thank you!!!!!!!!!!

--- Jenni Cypher wrote:

> > > > > > > > > > > > > >

> > >

>

> Definitely talk to her nurse. If you make an appointment through

the call center, they do not really understand what they are dealing with.

If you do get the call center, INSIST that the appointment be with Dr. Von

Stein as she is the only doctor there practicing Ponseti method.

> >

> > Jenni

> >

> > jennyandkelly wrote:

That's great! Just take the pictures like Kori

noted in her earlier

> > email to you. It might also help to note where the incisions are

> > from his last surgery if you don't know the details on exactly what

> > was done. Dr. Ponseti might be able to guess if he knows where they

> > are.

> >

> > In the meantime, you might want to call and talk to a nurse at Dr.

> > VonStein's office to determine what the earliest date would be that

> > they can see you. You can always cancel the appointment if you

> > decide to go to Iowa of course. (I say talk to a nurse because the

> > regular receptionists might not try to work you in early...maybe

> > some of Dr. VonStein's families could chime in with ideas here).

> >

> > Good luck and keep us posted!

> >

> > >

> > > I just wanted to update everyone that I did hear back from Dr.

> > Ponseti this

> > > morning. He has requested that I send him photos of Dino's feet

> > and then he

> > > can tell us what course of action to take next.

> > > Thank you so much again!

> >

> > Jenni-

> > Mom to (10/31/01) and Kelsey (11/7/03)happy girl in FAB nights only

for left clubfoot.

> > __________________________________________________

> >

July 7, 2006

Can anyone tell me what the " norm " is as far as wearing the braces after the

foot has been corrected?

I would just like a straight answer (or as close to it as possible) as to what

kind of road we are headed down?

Re: 7 MONTHS AND ....--Please seek Dr. Ponseti's

advice first!

That's great! Just take the pictures like Kori noted in her earlier

email to you. It might also help to note where the incisions are

from his last surgery if you don't know the details on exactly what

was done. Dr. Ponseti might be able to guess if he knows where they

are.

In the meantime, you might want to call and talk to a nurse at Dr.

VonStein's office to determine what the earliest date would be that

they can see you. You can always cancel the appointment if you

decide to go to Iowa of course. (I say talk to a nurse because the

regular receptionists might not try to work you in early...maybe

some of Dr. VonStein's families could chime in with ideas here).

Good luck and keep us posted!

>

> I just wanted to update everyone that I did hear back from Dr.

Ponseti this

> morning. He has requested that I send him photos of Dino's feet

and then he

> can tell us what course of action to take next.

> Thank you so much again!

July 7, 2006

Does anyone have any experience with G. Armstrong at Cleveland Rainbow

Babies & Children's Hosp?

Re: Re: 7 MONTHS AND ....--Please seek Dr.

Ponseti's advice first!

We have been very happy with Dr. Von Stein. She is Kelsey's second ortho as

well. She was excellent with Kelsey through casting, the tenotomy and all follow

up. She is very thorough. She is also very respectful of Dr. Ponseti so I do not

think she would have a problem consulting with him. I would definitely email him

though because I know he will be able to best guide you. I agree with what

said above.

wrote: Hi ,