Re: Maureen ...(long)

[Guest guest]

--

Thanks for the response. As you are no doubt aware, relapse is a concern

throughout life with a child with clubfoot, and especially so for those with

severe or arthrogyrpotic clubfoot. Each growth spurt is met with a holding

of one's breath.

On the one hand I am thankful that this discussion has been kept to this

forum, however, I also have that feeling of being talked about behind my

back, kwim?

I have done all of the research, visited everyone possible. Do I wish that

my orthopedist at least tried the Ponsetti method? of course, however, I do

know that 's slide towards relapse has more to do with 's

biomechanics than my surgeon's skill or the method used. Ponsetti actually

recommends a more radical and debilitating method for children like mine.

~Maureen

[Guest guest]

Theresa--

I agree with you on the lack of information. All parents should hear about

both options. When our son was born we had serial casting. And I know of

other families with idiopathic clubfoot who had serial casting, but not the

Ponsetti method. Many orthopedic surgeons do short-leg casts just to say

they tried it--but most know that they will be doing surgery. In fact, even

Dr. Feldman who does Ponsetti know refers to his misunderstanding of the

importance of the lenght of the casts.

Many surgeons also feed into a parent's desire to quickly do something to

correct/address the problem. Thus it is much easier to convince a parent to

do surgery at 6 mos old and nothing after that, than it is to have them do

serial casting for many months and have a DBB for 23+ hours for many months.

> You do mention that " Ponsetti actually recommends a more radical and

> debilitating method for children like mine. " Can I ask what exactly Dr.

> Ponseti would recommend in such a case?

>

Ponsetti recommends a triple arthrodesis. The surgeons who specialize in

Arthrogryposis recommend using the triple arthrodesis after all else has

failed surgically. And yes, the rate of recurrance is quite high.

~Maureen

[Guest guest]

Maureen:

I felt compelled to respond to your posts. My opinions in no way

represent the feelings of this board as a whole or any other

individual member. That being said, let me respond.

First, with regard to your response to Sara Masoner's statement

<<What makes me sad is when parents KNOW of the options and still

CHOSE surgery. I can understand if they didn't know, and was treated

surgically>>, I cannot speak for Sara, but I do believe her statement

did not pertain to children with Arthrogryposis, but rather to

idiopathic talipes equinovarus. Yes, there most certainly are parents

who chose surgery over the Ponseti method for children with

idiopathic talipes equinovarus and I think that was what Sara was

referring to, although if I'm wrong she can certainly correct me. The

majority of your response to Sara on this point was a defense to what

you've done for your children. No one here was condemming you and I

believe no one was even thinking about Arthrogryposis when they

posted a response to 's original post. You clearly are very

defensive about the surgeries, but we all know Arthrogryposis is a

different ballgame altogether.

With respect to your biting sarcasm: " Thanks for the image of the

wounded animal, " that was just uncalled for. First, she didn't make

the statement, she was merely repeating it and discussing the effects

it had on her which she has every right to do. You admitted you were

(WERE since you are now posting) a lurker, yet you deliberately tried

to make poster feel badly because your son is going in for hand

surgery in 2 weeks. Should she have known that? Do you think she

deliberately discussed that image to bring you pain? No, of course

she didn't, but that is how you attempted to make her feel and that

simply isn't right. You have to remember that this board is

nonsurgery for clubfoot and not a support board for surgery patients.

Hell, it's not even a support board IMO--it's a discussion group. I'm

sure we are all sorry for what your children are going through, but

there is no need to be so defensive. I am sure it's extremely hard on

you to see your babies undergo surgery and clearly you are extremely

defensive about it.

Now, with regard to your response to my post, I can say I was talking

about idiopathic talipes equinovarus. Quite frankly, I thought all

the discussions on this forum pertained to idiopathic talipes

equinovarus. From now on, if you see me opine on this message

exchange, know that I'm talking about idiopathic clubfoot.

Peace, Lorna

[Guest guest]

I kind of have a different take on some of this. Personally, we were

not faced with surgery as an option to correct our son's clubfeet (which

have been classified as very severe by his ortho). In fact, even when

we were told of his clubfeet (a few hours after he was born), the nurses

didn't even mention surgery. Their words to us were that clubfoot " was

completely correctable and that our son would have to wear casts and a

brace " . Of course, this is only OUR experience. I can't even begin to

understand the feelings that go through someone who is only given the

option of surgery to correct their child's feet. Because of this, I do

tend to shy away from discussions of surgery.

What does bother me about the whole " surgery vs. no surgery " debate is

that most people are not even told that there are options out there.

Would I have CHOSEN surgery had it been an option given to us? I can't

honestly say, but I doubt it. I have seen so many posts since becoming

active on the Parents Place bulletin board and the clubfootegroups

mailing list saying that the parents weren't even aware of the Ponseti

Method until AFTER their child had undergone surgery. I had almost the

exact opposite experience in that we weren't aware that SURGERY was an

option until after we were in the midst of treatment using the Ponseti

Method.

You do mention that " Ponsetti actually recommends a more radical and

debilitating method for children like mine. " Can I ask what exactly Dr.

Ponseti would recommend in such a case?

[Guest guest]

> Many surgeons also feed into a parent's desire to quickly do something to

> correct/address the problem. Thus it is much easier to convince a parent to

> do surgery at 6 mos old and nothing after that, than it is to have them do

> serial casting for many months and have a DBB for 23+ hours for many months.

>

We did not do the serial casting for several months, but I do understand

where you are coming from. Jakob was out of his casts and into the DBB

at 8 weeks old (to the day in fact). Once Jakob adjusted to his DBB

(which was only a couple days), I personally didn't find it to be a big

deal. I thought it was better in fact since I could take it off for

baths (which is obviously impossible with the casts).

Can you explain the triple arthrodesis? I've heard it mentioned, but I

don't know what it entails.

[Guest guest]

CaseyWaid@... wrote:

> Ponsetti recommends a triple arthrodesis.

*ouch*

Masoner

[Guest guest]

Maureen,

I have read your notes and my heart goes out to you. I am always wondering

if my child will show regression after his treatment with the Ponseti Method

and we will have to face the surgical route. Best of Luck,Kathy