My well-spoken, convincing friends...

[Guest guest]

,

I'm really glad, I actually never thought about people just emailing

off group, duh! lol! I know what you mean about the board getting a

little testy, not sure what the deal is with that; we should all be

in this together! I honestly think the parents who get offended are

the ones who did surgery because they thought it was a quick fix and

now they regret it; it is just sad that there are still so many docs

out there STILL not using the Method.

Thanks,

> > Hi all,

> > I just wanted to make an observation, I know that a large

majority

> of

> > us are also members of the " clubfoot " group, but I have noticed

> > lately that a lot of our eloquent and very persuasive advice has

> been

> > missing from that board. I know that group is supposed to be a

> > mixture of people who have used both non-surgical and surgical

> > methods but I have noticed a few parents recently (last 2-3

weeks)

> > posting there about possibly having surgery for their young

> children

> > or using AFO's and our responses have been, in my humble opinion,

> not

> > nearly as vocal as they need to be. There is one mom who I have

> been

> > corresponding with trying hard (without attacking her) to

convince

> > her not to have a soft tissue release (not sure what procedure

is)

> on

> > her 16 month old until she has had a 2nd opinion w/ a certified

> > Ponseti doc, I've not been very successful in convincing her but

I

> > thought if you ALL chime in she might be more convinced. I know

> it

> > is hard to keep up with both boards, I haven't even been online

> for

> > almost a week! but I feel it is almost our " duty " to keep giving

> our

> > excellent advice to the parents on both boards! Thanks to all of

> > you!!

> >

> >

> > Jenna (4/7/01) & Sammy (9/25/04, RCF Dobbs Brace 16-18/7)

[Guest guest]

Hi, I usually try not to pipe in on anyting that could cause

controversary, etc. But I just wanted to put my 2 sense in, When I

read this statement in on of the posts I want to add to it:

" I know what you mean about the board getting a

little testy, not sure what the deal is with that; we should all be

in this together! I honestly think the parents who get offended

are the ones who did surgery because they thought it was a quick fix

and now they regret it; it is just sad that there are still so many

docs > out there STILL not using the Method " I deffianlty agree

that we should all be in this together, we learn about things so

much faster when we do it togethers, etc. I just wanted to add

about the quick fix thing. I think there can be others reasons too

besides parents wanting a quick fix, for example the doctors we saw

when Collin was little told us they were using the ponseti method,

etc. I belived the idiots, he told me he had 20+ years experience,

etc!!!! With us all sharing info. etc it is great because it will

be easier for parents to spot fradulent doctors who lie. It is

wonderful to come to a board and type in a doctors name and get so

much feed back. For example you when a new parent comes on and ask

about Dr. Herzenberg I've never seen anyone write one negative

thing, me personally I think he's a genuis! But if you type in

Collin's first doctoros name Dr. Jay Kumar... at Alfred I. Dupont in

Wilmington, De I have seen so many negative responses about him (and

I think he deserves them and lies to parents about his methods,

etc.). It is wonderful that we as parents have a place to share

info. about doctors, etc. I love this board so much!

Michele

[Guest guest]

Hi, I usually try not to pipe in on anyting that could cause

controversary, etc. But I just wanted to put my 2 sense in, When I

read this statement in on of the posts I want to add to it:

" I know what you mean about the board getting a

little testy, not sure what the deal is with that; we should all be

in this together! I honestly think the parents who get offended

are the ones who did surgery because they thought it was a quick fix

and now they regret it; it is just sad that there are still so many

docs > out there STILL not using the Method " I deffianlty agree

that we should all be in this together, we learn about things so

much faster when we do it togethers, etc. I just wanted to add

about the quick fix thing. I think there can be others reasons too

besides parents wanting a quick fix, for example the doctors we saw

when Collin was little told us they were using the ponseti method,

etc. I belived the idiots, he told me he had 20+ years experience,

etc!!!! With us all sharing info. etc it is great because it will

be easier for parents to spot fradulent doctors who lie. It is

wonderful to come to a board and type in a doctors name and get so

much feed back. For example you when a new parent comes on and ask

about Dr. Herzenberg I've never seen anyone write one negative

thing, me personally I think he's a genuis! But if you type in

Collin's first doctoros name Dr. Jay Kumar... at Alfred I. Dupont in

Wilmington, De I have seen so many negative responses about him (and

I think he deserves them and lies to parents about his methods,

etc.). It is wonderful that we as parents have a place to share

info. about doctors, etc. I love this board so much!

Michele

[Guest guest]

Sometimes there are other things that affect whether a child needs

surgery or not. I have asked if there is anyone on here with a child

with spina bifida, but it looks like there isn't. My son has caudal

regression, which is similar to spina bifida. He has nerve problems

to his legs and feet, which have caused the clubfeet. Therefore,

mere casting is not going to do it for him.

And I am sick of the criticism of parents who have the surgery done

as trying to get a quick fix. Allowing your child to have surgery is

NOT EASY. But sometimes there other extenuating circumstances where

surgery is the only option. I guess I am in the wrong group to say

this, so don't worry, I'll be leaving.

> > > Hi all,

> > > I just wanted to make an observation, I know that a large

> majority

> > of

> > > us are also members of the " clubfoot " group, but I have

noticed

> > > lately that a lot of our eloquent and very persuasive advice

has

> > been

> > > missing from that board. I know that group is supposed to be

a

> > > mixture of people who have used both non-surgical and surgical

> > > methods but I have noticed a few parents recently (last 2-3

> weeks)

> > > posting there about possibly having surgery for their young

> > children

> > > or using AFO's and our responses have been, in my humble

opinion,

> > not

> > > nearly as vocal as they need to be. There is one mom who I

have

> > been

> > > corresponding with trying hard (without attacking her) to

> convince

> > > her not to have a soft tissue release (not sure what procedure

> is)

> > on

> > > her 16 month old until she has had a 2nd opinion w/ a

certified

> > > Ponseti doc, I've not been very successful in convincing her

but

> I

> > > thought if you ALL chime in she might be more convinced. I

know

> > it

> > > is hard to keep up with both boards, I haven't even been

online

> > for

> > > almost a week! but I feel it is almost our " duty " to keep

giving

> > our

> > > excellent advice to the parents on both boards! Thanks to all

of

> > > you!!

> > >

> > >

> > > Jenna (4/7/01) & Sammy (9/25/04, RCF Dobbs Brace 16-18/7)

[Guest guest]

Sometimes there are other things that affect whether a child needs

surgery or not. I have asked if there is anyone on here with a child

with spina bifida, but it looks like there isn't. My son has caudal

regression, which is similar to spina bifida. He has nerve problems

to his legs and feet, which have caused the clubfeet. Therefore,

mere casting is not going to do it for him.

And I am sick of the criticism of parents who have the surgery done

as trying to get a quick fix. Allowing your child to have surgery is

NOT EASY. But sometimes there other extenuating circumstances where

surgery is the only option. I guess I am in the wrong group to say

this, so don't worry, I'll be leaving.

> > > Hi all,

> > > I just wanted to make an observation, I know that a large

> majority

> > of

> > > us are also members of the " clubfoot " group, but I have

noticed

> > > lately that a lot of our eloquent and very persuasive advice

has

> > been

> > > missing from that board. I know that group is supposed to be

a

> > > mixture of people who have used both non-surgical and surgical

> > > methods but I have noticed a few parents recently (last 2-3

> weeks)

> > > posting there about possibly having surgery for their young

> > children

> > > or using AFO's and our responses have been, in my humble

opinion,

> > not

> > > nearly as vocal as they need to be. There is one mom who I

have

> > been

> > > corresponding with trying hard (without attacking her) to

> convince

> > > her not to have a soft tissue release (not sure what procedure

> is)

> > on

> > > her 16 month old until she has had a 2nd opinion w/ a

certified

> > > Ponseti doc, I've not been very successful in convincing her

but

> I

> > > thought if you ALL chime in she might be more convinced. I

know

> > it

> > > is hard to keep up with both boards, I haven't even been

online

> > for

> > > almost a week! but I feel it is almost our " duty " to keep

giving

> > our

> > > excellent advice to the parents on both boards! Thanks to all

of

> > > you!!

> > >

> > >

> > > Jenna (4/7/01) & Sammy (9/25/04, RCF Dobbs Brace 16-18/7)

[Guest guest]

le,

Please don't leave. I think you have the wrong impression of this group.

I am going to speak for others too. So others can yell at me if they

don't agree, but I think they do. We all understand that there are the

'special cases' and extenuating circumstances like your situation where

surgery may be the only option or best option in their case. However,

what we do believe is; for just the clubfoot deformity with NO other

physical deformities in conjuction, surgery is not the best option to fix

the clubfoot. Now, I am not educated in Spina bifida, but I do believe (I

could be wrong because I just don't know for sure) that the Ponseti Method

alone cannot correct the feet permanently, because walking and pressure on

the feet plays an important role to prevent the regression. I believe

there are others on this board who have spina bifida along with clubfoot,

but they just haven't chimed in with their stories yet.

Our main focus as a group is to help others with questions about the

Ponseti method and why to choose the Ponseti Method over surgery

(excluding special cases). We need persons like you on this board to help

others (newcomers) with situations like yours. Because your situation is

different and there isn't that many, we can learn from your experience and

help educate others in the future. I would only hope, someday, the feet

can be corrected without surgery in conjuction with spina bifida. Also,

if it were me, I would ask doctor Ponseti himself how he handles cases

with spina bifida or similar. I'm sure over the last 60 years of him

practicing, he has worked with that before. Because he has so much

experience, it doesn't hurt to see what the master thinks.

Please don't think we are purely 'against all surgery'. That just isn't

true.

Shook

Retail Operations Manager/Baking Instructor

Vie de France Yamazaki, Inc.

2070 Chain Bridge Rd. Suite 500

Vienna, VA 22182

x374

x374

fax

[Guest guest]

le,

Please don't leave. I think you have the wrong impression of this group.

I am going to speak for others too. So others can yell at me if they

don't agree, but I think they do. We all understand that there are the

'special cases' and extenuating circumstances like your situation where

surgery may be the only option or best option in their case. However,

what we do believe is; for just the clubfoot deformity with NO other

physical deformities in conjuction, surgery is not the best option to fix

the clubfoot. Now, I am not educated in Spina bifida, but I do believe (I

could be wrong because I just don't know for sure) that the Ponseti Method

alone cannot correct the feet permanently, because walking and pressure on

the feet plays an important role to prevent the regression. I believe

there are others on this board who have spina bifida along with clubfoot,

but they just haven't chimed in with their stories yet.

Our main focus as a group is to help others with questions about the

Ponseti method and why to choose the Ponseti Method over surgery

(excluding special cases). We need persons like you on this board to help

others (newcomers) with situations like yours. Because your situation is

different and there isn't that many, we can learn from your experience and

help educate others in the future. I would only hope, someday, the feet

can be corrected without surgery in conjuction with spina bifida. Also,

if it were me, I would ask doctor Ponseti himself how he handles cases

with spina bifida or similar. I'm sure over the last 60 years of him

practicing, he has worked with that before. Because he has so much

experience, it doesn't hurt to see what the master thinks.

Please don't think we are purely 'against all surgery'. That just isn't

true.

Shook

Retail Operations Manager/Baking Instructor

Vie de France Yamazaki, Inc.

2070 Chain Bridge Rd. Suite 500

Vienna, VA 22182

x374

x374

fax

[Guest guest]

I just wish it was this easy for us--casting, a little snipping,

shoes with a bar, and fixed feet. Having him go through surgeries is

HELL. It is NOT a quick fix. I'm sorry, I'm just in a bad mood

because we just found out yesterday that our son has to have knee

surgery in a few weeks. And to keep reading here about surgery being

a " quick fix, " oh, it pisses me off. Sitting in the waiting room for

3 to 5 hours, hoping he will wake up from the anesthesia, spending

the night in the hospital with kids all around you crying all night

long, the recovery time... it is NOT a quick fix and is NOT fun.

Sorry to vent.

> le,

> Please don't leave. I think you have the wrong impression of this

group.

> I am going to speak for others too. So others can yell at me if

they

> don't agree, but I think they do. We all understand that there

are the

> 'special cases' and extenuating circumstances like your situation

where

> surgery may be the only option or best option in their case.

However,

> what we do believe is; for just the clubfoot deformity with NO

other

> physical deformities in conjuction, surgery is not the best option

to fix

> the clubfoot. Now, I am not educated in Spina bifida, but I do

believe (I

> could be wrong because I just don't know for sure) that the

Ponseti Method

> alone cannot correct the feet permanently, because walking and

pressure on

> the feet plays an important role to prevent the regression. I

believe

> there are others on this board who have spina bifida along with

clubfoot,

> but they just haven't chimed in with their stories yet.

>

> Our main focus as a group is to help others with questions about

the

> Ponseti method and why to choose the Ponseti Method over surgery

> (excluding special cases). We need persons like you on this board

to help

> others (newcomers) with situations like yours. Because your

situation is

> different and there isn't that many, we can learn from your

experience and

> help educate others in the future. I would only hope, someday,

the feet

> can be corrected without surgery in conjuction with spina bifida.

Also,

> if it were me, I would ask doctor Ponseti himself how he handles

cases

> with spina bifida or similar. I'm sure over the last 60 years of

him

> practicing, he has worked with that before. Because he has so

much

> experience, it doesn't hurt to see what the master thinks.

>

> Please don't think we are purely 'against all surgery'. That just

isn't

> true.

>

>

>

>

> Shook

> Retail Operations Manager/Baking Instructor

> Vie de France Yamazaki, Inc.

> 2070 Chain Bridge Rd. Suite 500

> Vienna, VA 22182

> x374

> x374

> fax

>

>

[Guest guest]

I just wish it was this easy for us--casting, a little snipping,

shoes with a bar, and fixed feet. Having him go through surgeries is

HELL. It is NOT a quick fix. I'm sorry, I'm just in a bad mood

because we just found out yesterday that our son has to have knee

surgery in a few weeks. And to keep reading here about surgery being

a " quick fix, " oh, it pisses me off. Sitting in the waiting room for

3 to 5 hours, hoping he will wake up from the anesthesia, spending

the night in the hospital with kids all around you crying all night

long, the recovery time... it is NOT a quick fix and is NOT fun.

Sorry to vent.

> le,

> Please don't leave. I think you have the wrong impression of this

group.

> I am going to speak for others too. So others can yell at me if

they

> don't agree, but I think they do. We all understand that there

are the

> 'special cases' and extenuating circumstances like your situation

where

> surgery may be the only option or best option in their case.

However,

> what we do believe is; for just the clubfoot deformity with NO

other

> physical deformities in conjuction, surgery is not the best option

to fix

> the clubfoot. Now, I am not educated in Spina bifida, but I do

believe (I

> could be wrong because I just don't know for sure) that the

Ponseti Method

> alone cannot correct the feet permanently, because walking and

pressure on

> the feet plays an important role to prevent the regression. I

believe

> there are others on this board who have spina bifida along with

clubfoot,

> but they just haven't chimed in with their stories yet.

>

> Our main focus as a group is to help others with questions about

the

> Ponseti method and why to choose the Ponseti Method over surgery

> (excluding special cases). We need persons like you on this board

to help

> others (newcomers) with situations like yours. Because your

situation is

> different and there isn't that many, we can learn from your

experience and

> help educate others in the future. I would only hope, someday,

the feet

> can be corrected without surgery in conjuction with spina bifida.

Also,

> if it were me, I would ask doctor Ponseti himself how he handles

cases

> with spina bifida or similar. I'm sure over the last 60 years of

him

> practicing, he has worked with that before. Because he has so

much

> experience, it doesn't hurt to see what the master thinks.

>

> Please don't think we are purely 'against all surgery'. That just

isn't

> true.

>

>

>

>

> Shook

> Retail Operations Manager/Baking Instructor

> Vie de France Yamazaki, Inc.

> 2070 Chain Bridge Rd. Suite 500

> Vienna, VA 22182

> x374

> x374

> fax

>

>

[Guest guest]

le,

Please don't leave on account of this post!! This post was NOT

directed at parents whose children NEED surgery, and NOT at those who

chose surgery because their doctor told them it was the only option.

It is a given that there are some cases, especially in a situation

involving other medical issues that would REQUIRE surgery. I was

really referring to people on the other clubfoot group who get PO'ed

when someone tries to talk them out of having surgery before

investigating other options. We value having all viewpoints and all

types of parents and babies on the group and we would not want to have

you leave us over this misunderstanding.

Thanks,

> > > > Hi all,

> > > > I just wanted to make an observation, I know that a large

> > majority

> > > of

> > > > us are also members of the " clubfoot " group, but I have

> noticed

> > > > lately that a lot of our eloquent and very persuasive advice

> has

> > > been

> > > > missing from that board. I know that group is supposed to be

> a

> > > > mixture of people who have used both non-surgical and surgical

> > > > methods but I have noticed a few parents recently (last 2-3

> > weeks)

> > > > posting there about possibly having surgery for their young

> > > children

> > > > or using AFO's and our responses have been, in my humble

> opinion,

> > > not

> > > > nearly as vocal as they need to be. There is one mom who I

> have

> > > been

> > > > corresponding with trying hard (without attacking her) to

> > convince

> > > > her not to have a soft tissue release (not sure what procedure

> > is)

> > > on

> > > > her 16 month old until she has had a 2nd opinion w/ a

> certified

> > > > Ponseti doc, I've not been very successful in convincing her

> but

> > I

> > > > thought if you ALL chime in she might be more convinced. I

> know

> > > it

> > > > is hard to keep up with both boards, I haven't even been

> online

> > > for

> > > > almost a week! but I feel it is almost our " duty " to keep

> giving

> > > our

> > > > excellent advice to the parents on both boards! Thanks to all

> of

> > > > you!!

> > > >

> > > >

> > > > Jenna (4/7/01) & Sammy (9/25/04, RCF Dobbs Brace 16-18/7)

[Guest guest]

le,

Please don't leave on account of this post!! This post was NOT

directed at parents whose children NEED surgery, and NOT at those who

chose surgery because their doctor told them it was the only option.

It is a given that there are some cases, especially in a situation

involving other medical issues that would REQUIRE surgery. I was

really referring to people on the other clubfoot group who get PO'ed

when someone tries to talk them out of having surgery before

investigating other options. We value having all viewpoints and all

types of parents and babies on the group and we would not want to have

you leave us over this misunderstanding.

Thanks,

> > > > Hi all,

> > > > I just wanted to make an observation, I know that a large

> > majority

> > > of

> > > > us are also members of the " clubfoot " group, but I have

> noticed

> > > > lately that a lot of our eloquent and very persuasive advice

> has

> > > been

> > > > missing from that board. I know that group is supposed to be

> a

> > > > mixture of people who have used both non-surgical and surgical

> > > > methods but I have noticed a few parents recently (last 2-3

> > weeks)

> > > > posting there about possibly having surgery for their young

> > > children

> > > > or using AFO's and our responses have been, in my humble

> opinion,

> > > not

> > > > nearly as vocal as they need to be. There is one mom who I

> have

> > > been

> > > > corresponding with trying hard (without attacking her) to

> > convince

> > > > her not to have a soft tissue release (not sure what procedure

> > is)

> > > on

> > > > her 16 month old until she has had a 2nd opinion w/ a

> certified

> > > > Ponseti doc, I've not been very successful in convincing her

> but

> > I

> > > > thought if you ALL chime in she might be more convinced. I

> know

> > > it

> > > > is hard to keep up with both boards, I haven't even been

> online

> > > for

> > > > almost a week! but I feel it is almost our " duty " to keep

> giving

> > > our

> > > > excellent advice to the parents on both boards! Thanks to all

> of

> > > > you!!

> > > >

> > > >

> > > > Jenna (4/7/01) & Sammy (9/25/04, RCF Dobbs Brace 16-18/7)

[Guest guest]

le,

Don't worry, we are here to listen to venting as well. Believe me, you

are not the 1st, and probably not the last.

When we refer to surgery as a 'quick fix', it is usually towards those

doctors who don't even look at other options for clubfoot, mostly because

of money. Doctors don't make as much money when using the Ponseti method

versus a quick fix surgery. That is what pisses us off on this board.

Certainly not what you are going through.

I am sorry about your news of his knee. The best recommendation I can

give is take it in stride, one step at a time. You will get through it.

Vent some more if you need to.

Shook

Retail Operations Manager/Baking Instructor

Vie de France Yamazaki, Inc.

2070 Chain Bridge Rd. Suite 500

Vienna, VA 22182

x374

x374

fax

[Guest guest]

le,

Don't worry, we are here to listen to venting as well. Believe me, you

are not the 1st, and probably not the last.

When we refer to surgery as a 'quick fix', it is usually towards those

doctors who don't even look at other options for clubfoot, mostly because

of money. Doctors don't make as much money when using the Ponseti method

versus a quick fix surgery. That is what pisses us off on this board.

Certainly not what you are going through.

I am sorry about your news of his knee. The best recommendation I can

give is take it in stride, one step at a time. You will get through it.

Vent some more if you need to.

Shook

Retail Operations Manager/Baking Instructor

Vie de France Yamazaki, Inc.

2070 Chain Bridge Rd. Suite 500

Vienna, VA 22182

x374

x374

fax

[Guest guest]

Besides, those who get the surgery done think that they're doing the

best they can for their children. That's all we are all trying to

do.

> > > > > Hi all,

> > > > > I just wanted to make an observation, I know that a large

> > > majority

> > > > of

> > > > > us are also members of the " clubfoot " group, but I have

> > noticed

> > > > > lately that a lot of our eloquent and very persuasive

advice

> > has

> > > > been

> > > > > missing from that board. I know that group is supposed to

be

> > a

> > > > > mixture of people who have used both non-surgical and

surgical

> > > > > methods but I have noticed a few parents recently (last 2-

3

> > > weeks)

> > > > > posting there about possibly having surgery for their

young

> > > > children

> > > > > or using AFO's and our responses have been, in my humble

> > opinion,

> > > > not

> > > > > nearly as vocal as they need to be. There is one mom who

I

> > have

> > > > been

> > > > > corresponding with trying hard (without attacking her) to

> > > convince

> > > > > her not to have a soft tissue release (not sure what

procedure

> > > is)

> > > > on

> > > > > her 16 month old until she has had a 2nd opinion w/ a

> > certified

> > > > > Ponseti doc, I've not been very successful in convincing

her

> > but

> > > I

> > > > > thought if you ALL chime in she might be more convinced.

I

> > know

> > > > it

> > > > > is hard to keep up with both boards, I haven't even been

> > online

> > > > for

> > > > > almost a week! but I feel it is almost our " duty " to keep

> > giving

> > > > our

> > > > > excellent advice to the parents on both boards! Thanks to

all

> > of

> > > > > you!!

> > > > >

> > > > >

> > > > > Jenna (4/7/01) & Sammy (9/25/04, RCF Dobbs Brace 16-18/7)

[Guest guest]

le,

I agree, in most cases if parents do opt for surgery they have really

looked at the options and have to make the best decision they can for

their child. I have to say that my original post was probably a bit

of venting on my part too, I am just aggravated with a particular

situation.

Thanks,

> > > > > > Hi all,

> > > > > > I just wanted to make an observation, I know that a large

> > > > majority

> > > > > of

> > > > > > us are also members of the " clubfoot " group, but I have

> > > noticed

> > > > > > lately that a lot of our eloquent and very persuasive

> advice

> > > has

> > > > > been

> > > > > > missing from that board. I know that group is supposed to

> be

> > > a

> > > > > > mixture of people who have used both non-surgical and

> surgical

> > > > > > methods but I have noticed a few parents recently (last 2-

> 3

> > > > weeks)

> > > > > > posting there about possibly having surgery for their

> young

> > > > > children

> > > > > > or using AFO's and our responses have been, in my humble

> > > opinion,

> > > > > not

> > > > > > nearly as vocal as they need to be. There is one mom who

> I

> > > have

> > > > > been

> > > > > > corresponding with trying hard (without attacking her) to

> > > > convince

> > > > > > her not to have a soft tissue release (not sure what

> procedure

> > > > is)

> > > > > on

> > > > > > her 16 month old until she has had a 2nd opinion w/ a

> > > certified

> > > > > > Ponseti doc, I've not been very successful in convincing

> her

> > > but

> > > > I

> > > > > > thought if you ALL chime in she might be more convinced.

> I

> > > know

> > > > > it

> > > > > > is hard to keep up with both boards, I haven't even been

> > > online

> > > > > for

> > > > > > almost a week! but I feel it is almost our " duty " to keep

> > > giving

> > > > > our

> > > > > > excellent advice to the parents on both boards! Thanks to

> all

> > > of

> > > > > > you!!

> > > > > >

> > > > > >

> > > > > > Jenna (4/7/01) & Sammy (9/25/04, RCF Dobbs Brace 16-18/7)

[Guest guest]

le,

I think it's very rare for parents to think surgery is a quick fix; it's

some non-Ponseti doctors who give them that impression - incorrectly. We

were told that very thing by 's first surgeon. But I didn't believe him

- having had a cousin that was operated on and had major surgery myself, I

don't believe that ANY surgery is a quick fix.

A local Ponseti doctor who has been using the method for almost 2 years now

told me the other day that in all the cases he's done in that time (over 130

cases), only 1 set of parents decided to go for surgery instead as a 'quick

fix'. He said he had done everything he could to get them to re-consider,

but the other doctor had convinced them. They chose to go to the doctor

who had offered them a quick fix. He also told me that since starting with

the Ponseti technique he has had to PMR surgery on 2 children with other

issues like arthrogryposis, but says that because of the Ponseti technique

of casting he didn't have to do a full release or cut into the joint

capsules so there is less chance of arthritis, etc.

I think that most - if not all - of us understand that surgery is necessary

for some cases, around 5% of them according to Dr Ponseti's website. It's

those other 95% of newborns that may still be 'unnecessarily' having surgery

that we're trying to reach through our organisation recently started here in

South Africa. We also provide support and information for ALL babies and

children born with clubfoot - whether they've had surgery or not. And for

all other lower limb disorders, including hip dysplasia.

It would be a pity if you left this group, I hope you don't. Please let us

know how your son's surgery goes, you will find a lot of support here

Take care,

and

www.clubfoot.co.za

Moss

STEPS CHARITY

www.steps.org.za

Re: My well-spoken, convincing friends...

I just wish it was this easy for us--casting, a little snipping,

shoes with a bar, and fixed feet. Having him go through surgeries is

HELL. It is NOT a quick fix. I'm sorry, I'm just in a bad mood

because we just found out yesterday that our son has to have knee

surgery in a few weeks. And to keep reading here about surgery being

a " quick fix, " oh, it pisses me off. Sitting in the waiting room for

3 to 5 hours, hoping he will wake up from the anesthesia, spending

the night in the hospital with kids all around you crying all night

long, the recovery time... it is NOT a quick fix and is NOT fun.

Sorry to vent.

> le,

> Please don't leave. I think you have the wrong impression of this

group.

> I am going to speak for others too. So others can yell at me if

they

> don't agree, but I think they do. We all understand that there

are the

> 'special cases' and extenuating circumstances like your situation

where

> surgery may be the only option or best option in their case.

However,

> what we do believe is; for just the clubfoot deformity with NO

other

> physical deformities in conjuction, surgery is not the best option

to fix

> the clubfoot. Now, I am not educated in Spina bifida, but I do

believe (I

> could be wrong because I just don't know for sure) that the

Ponseti Method

> alone cannot correct the feet permanently, because walking and

pressure on

> the feet plays an important role to prevent the regression. I

believe

> there are others on this board who have spina bifida along with

clubfoot,

> but they just haven't chimed in with their stories yet.

>

> Our main focus as a group is to help others with questions about

the

> Ponseti method and why to choose the Ponseti Method over surgery

> (excluding special cases). We need persons like you on this board

to help

> others (newcomers) with situations like yours. Because your

situation is

> different and there isn't that many, we can learn from your

experience and

> help educate others in the future. I would only hope, someday,

the feet

> can be corrected without surgery in conjuction with spina bifida.

Also,

> if it were me, I would ask doctor Ponseti himself how he handles

cases

> with spina bifida or similar. I'm sure over the last 60 years of

him

> practicing, he has worked with that before. Because he has so

much

> experience, it doesn't hurt to see what the master thinks.

>

> Please don't think we are purely 'against all surgery'. That just

isn't

> true.

>

>

>

>

> Shook

> Retail Operations Manager/Baking Instructor

> Vie de France Yamazaki, Inc.

> 2070 Chain Bridge Rd. Suite 500

> Vienna, VA 22182

> x374

> x374

> fax

>

>

[Guest guest]

--- susan.shook@... wrote:

> le,

> Please don't leave. I think you have the wrong impression of this group.

> I am going to speak for others too. So others can yell at me if they

> don't agree, but I think they do. We all understand that there are the

> 'special cases' and extenuating circumstances like your situation where

> surgery may be the only option or best option in their case. However,

> what we do believe is; for just the clubfoot deformity with NO other

> physical deformities in conjuction, surgery is not the best option to fix

> the clubfoot. Now, I am not educated in Spina bifida, but I do believe (I

> could be wrong because I just don't know for sure) that the Ponseti Method

> alone cannot correct the feet permanently, because walking and pressure on

> the feet plays an important role to prevent the regression. I believe

> there are others on this board who have spina bifida along with clubfoot,

> but they just haven't chimed in with their stories yet.

If there are more people on here dealing with spina bifida and clubfoot, I wish

they'd chime in, too!!

> Our main focus as a group is to help others with questions about the

> Ponseti method and why to choose the Ponseti Method over surgery

> (excluding special cases). We need persons like you on this board to help

> others (newcomers) with situations like yours. Because your situation is

> different and there isn't that many, we can learn from your experience and

> help educate others in the future. I would only hope, someday, the feet

> can be corrected without surgery in conjuction with spina bifida. Also,

> if it were me, I would ask doctor Ponseti himself how he handles cases

> with spina bifida or similar. I'm sure over the last 60 years of him

> practicing, he has worked with that before. Because he has so much

> experience, it doesn't hurt to see what the master thinks.

Our baby due in September has just been diagnosed with spina bifida. I emailed

Dr. Ponseti (our oldest, who only had clubfoot, was treated by him with great

success), and he basically said that they do treat clubfeet with spina bifida,

but results are varied depending on the extent of muscle weakness caused by the

nerve damage at the spina bifida site.

> Please don't think we are purely 'against all surgery'. That just isn't

> true.

I think I have a unique perspective due to our first having clubfoot. She was

facing surgery, and at six months we started seeing Dr. Ponseti. Her foot was

corrected without surgery, and it still looks great today at 6.5 years of age!

I am facing an entirely different situation now. This baby will have surgery

no matter what, (unless the diagnosis is wrong!), and wow, what an adjustment

to make. I'm hoping we can avoid as much surgery as possible on the feet, so

I'm really trying to find a way to get to a Ponseti doctor or to Iowa.

Joy

http://www.geocities.com/joybelle15/rosesclubfootpage.html

____________________________________________________

Yahoo! Sports

Rekindle the Rivalries. Sign up for Fantasy Football

http://football.fantasysports.yahoo.com

[Guest guest]

Hi le, Please don't leave the group. I understand the " Quick

Fix " struck a nerve with you...it did to me too thats why I posted

earlier. I know it wasn't meant to strike our nerves and it could

easily have been taken wrong. I know it hurt me too when I read it

though because I did allow my son to have surgery when he was young,

etc. it deffianly wasn't a quick fix though it was the hardest thing

I had ever done and I felt like I was doing what was best for him at

the time. I really hope you stay around this is a great group, it is

hard when we are all talking just through the board things sometimes

read different then what we are thinking when we are typing. I know

the person who said " quick fix " didn't mean to hurt any of us she was

just frustrated that some parents don't investigate there options.

Again Please stay!!!

Michele

[Guest guest]

--- le wrote:

> I just wish it was this easy for us--casting, a little snipping,

> shoes with a bar, and fixed feet. Having him go through surgeries is

> HELL. It is NOT a quick fix. I'm sorry, I'm just in a bad mood

> because we just found out yesterday that our son has to have knee

> surgery in a few weeks. And to keep reading here about surgery being

> a " quick fix, " oh, it pisses me off. Sitting in the waiting room for

> 3 to 5 hours, hoping he will wake up from the anesthesia, spending

> the night in the hospital with kids all around you crying all night

> long, the recovery time... it is NOT a quick fix and is NOT fun.

> Sorry to vent.

(((le))) I am facing spina bifida (with a potential many surgeries) and

clubfeet.

I don't think most parents on here think of surgery to fix clubfoot as a quick

fix. Why would so many of them search for an alternative? I think the biggest

reason why that phrase is used is because many doctors have given that reason

and impression to many parents about surgery. I was asked why I would want to

do bracing for years with our oldest instead of being " done " by a year. I do

see what you are saying, but I don't think that is what was meant.

I really hope you stick around. I really, really am going to need your

perspective in the upcoming months. I will be facing surgery, and my baby will

within the first 24 hours of its life. Talk about a panic attack from a parent

who was able to avoid clubfoot surgery!

I'm so sorry your son is going to need surgery on his knee. The surgeries

sound very frightening and frustrating.

Joy

Rose (1/99) Left Clubfoot, started Ponseti Method at 6 months, out of FAB at 2

1/2

#4 (due 9/05) Diagnosed via u/s to have bilateral clubfeet along with spina

bifida

http://www.geocities.com/joybelle15/rosesclubfootpage.html

____________________________________________________

Yahoo! Sports

Rekindle the Rivalries. Sign up for Fantasy Football

http://football.fantasysports.yahoo.com

[Guest guest]

Thanks, everyone, for trying to get me to stick around. Joy, I wish

you all the luck in the world. I am on a few spina bifida boards

that are also helpful. I also want to recommend a book to you, Giant

Steps: One Boy's Struggle to Walk by Gilbert Gaul. The writer has a

son with spina bifida, and this book is great in telling all the

things they went through, etc.

The frustrating thing with this knee surgery is going to be that my

son, Jordan, now looooves standing up. And now he is going to have

casts on for 4 to 6 weeks and will not be able to stand up. It is

going to be so frustrating for him! He whines a lot when we don't

let him stand up now as it is!!! We took him to the movies to see

Madagascar, and he HAD to stand up on my lap throughout the entire

movie!!

Anyway, Joy, I will try to help as much as I can. You can email me

individually if you want, too. And check out my son's page if you

get a chance. It shows a lot about our whole journey and the

progress he's made!

www.caringbridge.com/pa/jordan

le

>

> > I just wish it was this easy for us--casting, a little snipping,

> > shoes with a bar, and fixed feet. Having him go through

surgeries is

> > HELL. It is NOT a quick fix. I'm sorry, I'm just in a bad mood

> > because we just found out yesterday that our son has to have

knee

> > surgery in a few weeks. And to keep reading here about surgery

being

> > a " quick fix, " oh, it pisses me off. Sitting in the waiting room

for

> > 3 to 5 hours, hoping he will wake up from the anesthesia,

spending

> > the night in the hospital with kids all around you crying all

night

> > long, the recovery time... it is NOT a quick fix and is NOT fun.

> > Sorry to vent.

>

> (((le))) I am facing spina bifida (with a potential many

surgeries) and

> clubfeet.

>

> I don't think most parents on here think of surgery to fix

clubfoot as a quick

> fix. Why would so many of them search for an alternative? I

think the biggest

> reason why that phrase is used is because many doctors have given

that reason

> and impression to many parents about surgery. I was asked why I

would want to

> do bracing for years with our oldest instead of being " done " by a

year. I do

> see what you are saying, but I don't think that is what was meant.

>

> I really hope you stick around. I really, really am going to need

your

> perspective in the upcoming months. I will be facing surgery, and

my baby will

> within the first 24 hours of its life. Talk about a panic attack

from a parent

> who was able to avoid clubfoot surgery!

>

> I'm so sorry your son is going to need surgery on his knee. The

surgeries

> sound very frightening and frustrating.

>

> Joy

> Rose (1/99) Left Clubfoot, started Ponseti Method at 6 months, out

of FAB at 2

> 1/2

>

> #4 (due 9/05) Diagnosed via u/s to have bilateral clubfeet along

with spina bifida

>

> http://www.geocities.com/joybelle15/rosesclubfootpage.html

>

>

>

> ____________________________________________________

> Yahoo! Sports

> Rekindle the Rivalries. Sign up for Fantasy Football

> http://football.fantasysports.yahoo.com

[Guest guest]

Michele,

Thanks for sticking up for me and understanding, ugh - I should just

stick my foot in my mouth and leave it there, lol! Again, I hope

everyone has forgiven me if I did offend.

Thanks,

> Hi le, Please don't leave the group. I understand the " Quick

> Fix " struck a nerve with you...it did to me too thats why I posted

> earlier. I know it wasn't meant to strike our nerves and it could

> easily have been taken wrong. I know it hurt me too when I read it

> though because I did allow my son to have surgery when he was young,

> etc. it deffianly wasn't a quick fix though it was the hardest thing

> I had ever done and I felt like I was doing what was best for him at

> the time. I really hope you stay around this is a great group, it is

> hard when we are all talking just through the board things sometimes

> read different then what we are thinking when we are typing. I know

> the person who said " quick fix " didn't mean to hurt any of us she was

> just frustrated that some parents don't investigate there options.

> Again Please stay!!!

>

> Michele

[Guest guest]

le-

Your son is a cutie pie. What a great website. He is adorable. Isn't

it amazing how quick kids adapt to things-we adults could use a

lesson. My son had hand surgery and just 4 hours after the surgery

is was rolling, crawling, scrapping around on the floor as if

nothing had happened.

Thanks for sharing his story,

Kathleen

Mom to 8/28/04 dbb 14/7

> >

> > > I just wish it was this easy for us--casting, a little

snipping,

> > > shoes with a bar, and fixed feet. Having him go through

> surgeries is

> > > HELL. It is NOT a quick fix. I'm sorry, I'm just in a bad mood

> > > because we just found out yesterday that our son has to have

> knee

> > > surgery in a few weeks. And to keep reading here about surgery

> being

> > > a " quick fix, " oh, it pisses me off. Sitting in the waiting

room

> for

> > > 3 to 5 hours, hoping he will wake up from the anesthesia,

> spending

> > > the night in the hospital with kids all around you crying all

> night

> > > long, the recovery time... it is NOT a quick fix and is NOT

fun.

> > > Sorry to vent.

> >

> > (((le))) I am facing spina bifida (with a potential many

> surgeries) and

> > clubfeet.

> >

> > I don't think most parents on here think of surgery to fix

> clubfoot as a quick

> > fix. Why would so many of them search for an alternative? I

> think the biggest

> > reason why that phrase is used is because many doctors have

given

> that reason

> > and impression to many parents about surgery. I was asked why I

> would want to

> > do bracing for years with our oldest instead of being " done " by

a

> year. I do

> > see what you are saying, but I don't think that is what was

meant.

> >

> > I really hope you stick around. I really, really am going to

need

> your

> > perspective in the upcoming months. I will be facing surgery,

and

> my baby will

> > within the first 24 hours of its life. Talk about a panic

attack

> from a parent

> > who was able to avoid clubfoot surgery!

> >

> > I'm so sorry your son is going to need surgery on his knee. The

> surgeries

> > sound very frightening and frustrating.

> >

> > Joy

> > Rose (1/99) Left Clubfoot, started Ponseti Method at 6 months,

out

> of FAB at 2

> > 1/2

> >

> > #4 (due 9/05) Diagnosed via u/s to have bilateral clubfeet along

> with spina bifida

> >

> > http://www.geocities.com/joybelle15/rosesclubfootpage.html

> >

> >

> >

> > ____________________________________________________

> > Yahoo! Sports

> > Rekindle the Rivalries. Sign up for Fantasy Football

> > http://football.fantasysports.yahoo.com

[Guest guest]

I really don't think anyone is suggesting that is is an easy thing.... and of

course there are extenuating circumstances to consider... My son is almost 80% a

certainty for Anterior Tibialis Transfer, and Gabe's doctor is Ponseti! The

point we're trying to make, is that for a while now, we've been quite lax, (so

we thought) in informing people that there might be a better way to do things...

Such, for example, when people mention all the trouble they've had with AFO's...

or when they've seen non-Ponseti doc (or Ponseti ) doc who are suggesting

extensive surgery. Please don't take some perhaps politically incorrect

discussion as pointedly criticising you, the individual. If every email was

sensored so as not to affend ANYONE in ANY WAY, well, nothing would ever be

said.

le wrote:Sometimes there are other things that

affect whether a child needs

surgery or not. I have asked if there is anyone on here with a child

with spina bifida, but it looks like there isn't. My son has caudal

regression, which is similar to spina bifida. He has nerve problems

to his legs and feet, which have caused the clubfeet. Therefore,

mere casting is not going to do it for him.

And I am sick of the criticism of parents who have the surgery done

as trying to get a quick fix. Allowing your child to have surgery is

NOT EASY. But sometimes there other extenuating circumstances where

surgery is the only option. I guess I am in the wrong group to say

this, so don't worry, I'll be leaving.

> > > Hi all,

> > > I just wanted to make an observation, I know that a large

> majority

> > of

> > > us are also members of the " clubfoot " group, but I have

noticed

> > > lately that a lot of our eloquent and very persuasive advice

has

> > been

> > > missing from that board. I know that group is supposed to be

a

> > > mixture of people who have used both non-surgical and surgical

> > > methods but I have noticed a few parents recently (last 2-3

> weeks)

> > > posting there about possibly having surgery for their young

> > children

> > > or using AFO's and our responses have been, in my humble

opinion,

> > not

> > > nearly as vocal as they need to be. There is one mom who I

have

> > been

> > > corresponding with trying hard (without attacking her) to

> convince

> > > her not to have a soft tissue release (not sure what procedure

> is)

> > on

> > > her 16 month old until she has had a 2nd opinion w/ a

certified

> > > Ponseti doc, I've not been very successful in convincing her

but

> I

> > > thought if you ALL chime in she might be more convinced. I

know

> > it

> > > is hard to keep up with both boards, I haven't even been

online

> > for

> > > almost a week! but I feel it is almost our " duty " to keep

giving

> > our

> > > excellent advice to the parents on both boards! Thanks to all

of

> > > you!!

> > >

> > >

> > > Jenna (4/7/01) & Sammy (9/25/04, RCF Dobbs Brace 16-18/7)

[Guest guest]

le,

I don't think any of us think that surgery is the quick fix. I know

I don't. From what I understand, surgery is actually a longer

process, with far more complications and negative effects down the

road. What is frustrating is when, as metioned, parents don't

consider Ponsetti because it seems so tedious and time consuming.

And THEY think it is the quick fix. And, as you put it, Ponsetti is

really just casting, a little snip and a brace for a while. It is

much less traumatic than surgery, but many don't realize that. That

is what most of us are trying to help those who have an option to

avoid. And for those who don't have an option, well, my heart goes

out to you. I know how agonizing it is to wait in a waiting room

for a loved one who is in surgery, worrying and praying that they

will be okay and that the surgery will be a success, and that

hopefully this will be the last surgery they have to have. I know

how the thoughts and worries can take over until the doctor comes

out and says they are done.

I too hope you will stick around and balance out this board. I know

everyone here is very pro-Ponsetti, but the passion comes from

seeing the great success of the treatment. Like any other medical

treatment, however, it can't work in every situation.

> > le,

> > Please don't leave. I think you have the wrong impression of

this

> group.

> > I am going to speak for others too. So others can yell at me if

> they

> > don't agree, but I think they do. We all understand that there

> are the

> > 'special cases' and extenuating circumstances like your

situation

> where

> > surgery may be the only option or best option in their case.

> However,

> > what we do believe is; for just the clubfoot deformity with NO

> other

> > physical deformities in conjuction, surgery is not the best

option

> to fix

> > the clubfoot. Now, I am not educated in Spina bifida, but I do

> believe (I

> > could be wrong because I just don't know for sure) that the

> Ponseti Method

> > alone cannot correct the feet permanently, because walking and

> pressure on

> > the feet plays an important role to prevent the regression. I

> believe

> > there are others on this board who have spina bifida along with

> clubfoot,

> > but they just haven't chimed in with their stories yet.

> >

> > Our main focus as a group is to help others with questions about

> the

> > Ponseti method and why to choose the Ponseti Method over surgery

> > (excluding special cases). We need persons like you on this

board

> to help

> > others (newcomers) with situations like yours. Because your

> situation is

> > different and there isn't that many, we can learn from your

> experience and

> > help educate others in the future. I would only hope, someday,

> the feet

> > can be corrected without surgery in conjuction with spina

bifida.

> Also,

> > if it were me, I would ask doctor Ponseti himself how he handles

> cases

> > with spina bifida or similar. I'm sure over the last 60 years

of

> him

> > practicing, he has worked with that before. Because he has so

> much

> > experience, it doesn't hurt to see what the master thinks.

> >

> > Please don't think we are purely 'against all surgery'. That

just

> isn't

> > true.

> >

> >

> >

> >

> > Shook

> > Retail Operations Manager/Baking Instructor

> > Vie de France Yamazaki, Inc.

> > 2070 Chain Bridge Rd. Suite 500

> > Vienna, VA 22182

> > x374

> > x374

> > fax

> >

> >

[Guest guest]

le,

I don't think any of us think that surgery is the quick fix. I know

I don't. From what I understand, surgery is actually a longer

process, with far more complications and negative effects down the

road. What is frustrating is when, as metioned, parents don't

consider Ponsetti because it seems so tedious and time consuming.

And THEY think it is the quick fix. And, as you put it, Ponsetti is

really just casting, a little snip and a brace for a while. It is

much less traumatic than surgery, but many don't realize that. That

is what most of us are trying to help those who have an option to

avoid. And for those who don't have an option, well, my heart goes

out to you. I know how agonizing it is to wait in a waiting room

for a loved one who is in surgery, worrying and praying that they

will be okay and that the surgery will be a success, and that

hopefully this will be the last surgery they have to have. I know

how the thoughts and worries can take over until the doctor comes

out and says they are done.

I too hope you will stick around and balance out this board. I know

everyone here is very pro-Ponsetti, but the passion comes from

seeing the great success of the treatment. Like any other medical

treatment, however, it can't work in every situation.

> > le,

> > Please don't leave. I think you have the wrong impression of

this

> group.

> > I am going to speak for others too. So others can yell at me if

> they

> > don't agree, but I think they do. We all understand that there

> are the

> > 'special cases' and extenuating circumstances like your

situation

> where

> > surgery may be the only option or best option in their case.

> However,

> > what we do believe is; for just the clubfoot deformity with NO

> other

> > physical deformities in conjuction, surgery is not the best

option

> to fix

> > the clubfoot. Now, I am not educated in Spina bifida, but I do

> believe (I

> > could be wrong because I just don't know for sure) that the

> Ponseti Method

> > alone cannot correct the feet permanently, because walking and

> pressure on

> > the feet plays an important role to prevent the regression. I

> believe

> > there are others on this board who have spina bifida along with

> clubfoot,

> > but they just haven't chimed in with their stories yet.

> >

> > Our main focus as a group is to help others with questions about

> the

> > Ponseti method and why to choose the Ponseti Method over surgery

> > (excluding special cases). We need persons like you on this

board

> to help

> > others (newcomers) with situations like yours. Because your

> situation is

> > different and there isn't that many, we can learn from your

> experience and

> > help educate others in the future. I would only hope, someday,

> the feet

> > can be corrected without surgery in conjuction with spina

bifida.

> Also,

> > if it were me, I would ask doctor Ponseti himself how he handles

> cases

> > with spina bifida or similar. I'm sure over the last 60 years

of

> him

> > practicing, he has worked with that before. Because he has so

> much

> > experience, it doesn't hurt to see what the master thinks.

> >

> > Please don't think we are purely 'against all surgery'. That

just

> isn't

> > true.

> >

> >

> >

> >

> > Shook

> > Retail Operations Manager/Baking Instructor

> > Vie de France Yamazaki, Inc.

> > 2070 Chain Bridge Rd. Suite 500

> > Vienna, VA 22182

> > x374

> > x374

> > fax

> >

> >