Re: Posterior ankle and subtalar joint capsulotomy

December 24, 2005

I agree here. Follow your gut, like you said you're not comfortable with the

surgery being suggested and probably for good reason! You have time to get

this done right if you wait, but you know if the doc goes in and does some funky

operation it can't be un-done later.

Good luck,

s.

Re: Posterior ankle and subtalar joint

capsulotomy

This surgery is not part of Dr. Ponseti's protocol. In my opinion, you would

be better off waiting for the Shriners thing to some through as opposed to

going through with this surgery. I have never heard of Dr. Ponseti performing

a surgery such as this particularly on such a young child.

Jenni

cricketsmom05 wrote: Hi, guys. My dd has a new

ortho (her third) that we just began

seeing this week. New doctor says that on Jan. 3, she has scheduled

for a bilateral achilles tenetomy w/ a posterior ankle and

joint subtalar joint capsulotomy. I told her that I was not

comfortable with it, and told her that although she says that she

adheres strictly with the Ponseti method, this did not sound like

something that was part of his method (I had the global help booklet

with me). She says that the whole procedure is something that she

learned at one of Dr.P's courses that he taught. This just doesn't

sound right to me. I thought the simple, non-open incision was part

of Dr. P's plan...Has anyone had experience with this? I emailed

Joyce at Dr. Ponseti's office and included pictures of

standing and me pushing her foot to dorsiflexion (he requested the

pics last week), but I haven't heard back, I'm sure because of the

holidays. We have applied to go to Shriners in Tampa where a doc on

Dr. Ponseti's list is practicing. However the application has to be

approved by the chief of staff, which they said could take weeks. I

don't know if Shriners only takes cases based on financial need,

which I'm not sure that we would qualify for...Anyway, just looking

for info or advice about the doctor's claim that this was something

that Ponseti teaches. BTW, I am going to put the standing pics (she

doesn't stand on her own yet) and the dorsiflexion pics on the

cfpics board, in case anyone has insight into whether they think she

might need the surgery that is being suggested. Thanks, guys! Don't

know what I would have done w/out all of the advice and info that we

have gained here, just in the past couple of weeks!

- ( 2/1/05 bcf DBB 23/7)

December 26, 2005

Hi ,

I posted a quick note to you on the cfpics site and after reading

this post, I am soooo relieved that you have sent pics to Dr.

Ponseti! I think that you are right to question this surgery! And for

her to have scheduled the capsultotmy without talking to you about

your options first =( wrong wrong wrong! But your mommy instincts

have already told you this!

We are so sorry to hear that you have had such a hard time finding a

good doctor for ! She is still so young, there is time to get

her to a good Ponseti doc. Hopefully Dr. Ponseti gets back to you

soon and can recommend a good doc for her to see!

Hang in there!!

& Grace

-- In nosurgery4clubfoot , " cricketsmom05 "

<g8r1972@h...> wrote:

>

> Hi, guys. My dd has a new ortho (her third) that we just began

> seeing this week. New doctor says that on Jan. 3, she has scheduled

> for a bilateral achilles tenetomy w/ a posterior ankle and

> joint subtalar joint capsulotomy. I told her that I was not

> comfortable with it, and told her that although she says that she

> adheres strictly with the Ponseti method, this did not sound like

> something that was part of his method (I had the global help

booklet

> with me). She says that the whole procedure is something that she

> learned at one of Dr.P's courses that he taught. This just doesn't

> sound right to me. I thought the simple, non-open incision was part

> of Dr. P's plan...Has anyone had experience with this? I emailed

> Joyce at Dr. Ponseti's office and included pictures of

> standing and me pushing her foot to dorsiflexion (he requested the

> pics last week), but I haven't heard back, I'm sure because of the

> holidays. We have applied to go to Shriners in Tampa where a doc on

> Dr. Ponseti's list is practicing. However the application has to be

> approved by the chief of staff, which they said could take weeks. I

> don't know if Shriners only takes cases based on financial need,

> which I'm not sure that we would qualify for...Anyway, just looking

> for info or advice about the doctor's claim that this was something

> that Ponseti teaches. BTW, I am going to put the standing pics (she

> doesn't stand on her own yet) and the dorsiflexion pics on the

> cfpics board, in case anyone has insight into whether they think

she

> might need the surgery that is being suggested. Thanks, guys! Don't

> know what I would have done w/out all of the advice and info that

we

> have gained here, just in the past couple of weeks!

> - ( 2/1/05 bcf DBB 23/7)

>

December 26, 2005

(and EVERYONE that gave us your amazing advice...)

I got an email from Dr. Ponseti today. He wants us to come to Iowa

(I will copy his email at the bottom of this post), and says that it

looks like has atypical clubfeet. We had never even known

that this was a possibilty...No doctors have told us that before

(crappy doctors...grumble, grumble). Anyway, dh and I are all set

for me to head up to Iowa with . This is the problem: I called

the insurance company, and Dr. Ponseti is not listed as a " network

provider. " I am going to go to the insurance office tomorrow, and

see what can be done. I have even tried to see if we could see

Herzenberg or Dobbs instead, but neither are on the provider list

either. It looks like if we do decide to take this route, even

without insurance, that I will drive to Iowa (3 day trip one way). I

would love to hear about experinces with The Mc House,

if anyone has any, and ideas about possible doctors closer to

Florida? I read a post (from on CFPics) that said that her

daughter has atypical clubfeet, and even after seeing Dr. Ponseti,

things aren't great. I am so afraid (but I know life is full of

risks) that we will venture into this, drive up to Iowa City, live

there for a month or so, pay everything out of pocket, and then in

three months, be back to where we started. I am so overwhelmed, (to

add insult to injury,dh is overseas in military) any words of wisdom?

- BTW, here is the email from Dr. Posenti today:

To: " J "

Subject: RE: From Dr. Ponseti

Date: Mon, 26 Dec 2005 15:07:33 -0600

December 26, 2005

The pictures show the feet are not fully corrected. has a

deep crease on the medial side of the foot and the feet are held in

plantar flexion. She has what we call atypical clubfeet. SHE

DEFINITELY SHOULD NOT HAVE SURGERY SINCE IT WILL ONLY MAKE MATTERS

WORSE. These feet tend to form scar tissue which makes them very

difficult to treat. The only surgery that should be done for

atypical clubfeet is a percutaneous tendo Achilles tenotomy under

local anesthesia when the foot is in proper alignment. is

not ready for the tenotomy. I do not know if Dr. Grogan has ever

treated atypical clubfeet or if he is familiar with the

brace mentioned in my previous e-mail.

I strongly recommend you bring here if possible. The nearest

airport is at Cedar Rapids, Iowa, which is 25 miles from Iowa City.

There is a shuttle van which will bring you to Iowa City. Most of

our families stay at the Mc House. See the web site

www.uihealthcare.com/ronaldmcdonaldhouse

If you would like to speak with me by phone, the best times to reach

me are after 2:30 p.m. on Mondays (except Dec. 26 and Jan. 2),

Wednesdays, and Fridays at 319 XXX-XXXX.

I.V. Ponseti, M.D.

> >

> > Hi, guys. My dd has a new ortho (her third) that we just began

> > seeing this week. New doctor says that on Jan. 3, she has

scheduled

> > for a bilateral achilles tenetomy w/ a posterior ankle

and

> > joint subtalar joint capsulotomy. I told her that I was not

> > comfortable with it, and told her that although she says that

she

> > adheres strictly with the Ponseti method, this did not sound

like

> > something that was part of his method (I had the global help

> booklet

> > with me). She says that the whole procedure is something that

she

> > learned at one of Dr.P's courses that he taught. This just

doesn't

> > sound right to me. I thought the simple, non-open incision was

part

> > of Dr. P's plan...Has anyone had experience with this? I emailed

> > Joyce at Dr. Ponseti's office and included pictures of

> > standing and me pushing her foot to dorsiflexion (he requested

the

> > pics last week), but I haven't heard back, I'm sure because of

the

> > holidays. We have applied to go to Shriners in Tampa where a doc

on

> > Dr. Ponseti's list is practicing. However the application has to

be

> > approved by the chief of staff, which they said could take

weeks. I

> > don't know if Shriners only takes cases based on financial need,

> > which I'm not sure that we would qualify for...Anyway, just

looking

> > for info or advice about the doctor's claim that this was

something

> > that Ponseti teaches. BTW, I am going to put the standing pics

(she

> > doesn't stand on her own yet) and the dorsiflexion pics on the

> > cfpics board, in case anyone has insight into whether they think

> she

> > might need the surgery that is being suggested. Thanks, guys!

Don't

> > know what I would have done w/out all of the advice and info

that

> we

> > have gained here, just in the past couple of weeks!

> > - ( 2/1/05 bcf DBB 23/7)

> >

>

December 26, 2005

Hi ,

Yea Yea Yea, so glad that you heard back from Dr. Ponseti...not

probably what you wanted to hear but it's good to KNOW what's really

going on with 's feet isn't it?!

As far as getting to Iowa, there is a service called Angel Flights

that will fly you and her there and back for Free! One of the other

momma's that have used this wonderful service will pipe up here I am

sure. You may want to send a post to the list with Angle Flights in

the tag line.

From what I have heard, the Mac house is supposed to be

great and you will probably get to meet some of the other moms from

this board while there =)(I am a bit jealous here hehe). I will say

this...dress WARM from Florida to Iowa in Jan. is going to be a bit

of a shock to say the least LOL!

As far as insurance goes, again, someome will give you some advise

there too I am sure, I am a Canadian so don't have to deal with those

insurance companies TG!

As far as her feet relapsing...I would try not to worry too much

(funny ME saying that haha ha), it is very unusual for a foot to

relapse so much with proper bracing. I KNOW that is religious

about the brace and Angel's son Kai also has had a few relapses but

keep in mind, this is very very rare. should be fine in the

s, I guess what I am trying to say is, don't worry about what

hasn't happened yet =).

We are just so happy for you and , she will have beautiful

straight little happy feet in no time with Dr. Ponseti!!!

Sorry to hear that your dh is away right now. I think you should give

yourself a huge pat on the back for figuring all this out and give

a hug from us!

& Grace

> > >

> > > Hi, guys. My dd has a new ortho (her third) that we just began

> > > seeing this week. New doctor says that on Jan. 3, she has

> scheduled

> > > for a bilateral achilles tenetomy w/ a posterior ankle

> and

> > > joint subtalar joint capsulotomy. I told her that I was not

> > > comfortable with it, and told her that although she says that

> she

> > > adheres strictly with the Ponseti method, this did not sound

> like

> > > something that was part of his method (I had the global help

> > booklet

> > > with me). She says that the whole procedure is something that

> she

> > > learned at one of Dr.P's courses that he taught. This just

> doesn't

> > > sound right to me. I thought the simple, non-open incision was

> part

> > > of Dr. P's plan...Has anyone had experience with this? I

emailed

> > > Joyce at Dr. Ponseti's office and included pictures of

> > > standing and me pushing her foot to dorsiflexion (he requested

> the

> > > pics last week), but I haven't heard back, I'm sure because of

> the

> > > holidays. We have applied to go to Shriners in Tampa where a

doc

> on

> > > Dr. Ponseti's list is practicing. However the application has

to

> be

> > > approved by the chief of staff, which they said could take

> weeks. I

> > > don't know if Shriners only takes cases based on financial

need,

> > > which I'm not sure that we would qualify for...Anyway, just

> looking

> > > for info or advice about the doctor's claim that this was

> something

> > > that Ponseti teaches. BTW, I am going to put the standing pics

> (she

> > > doesn't stand on her own yet) and the dorsiflexion pics on the

> > > cfpics board, in case anyone has insight into whether they

think

> > she

> > > might need the surgery that is being suggested. Thanks, guys!

> Don't

> > > know what I would have done w/out all of the advice and info

> that

> > we

> > > have gained here, just in the past couple of weeks!

> > > - ( 2/1/05 bcf DBB 23/7)

> > >

> >

>

December 27, 2005

-

I'm so glad you're going to see Dr. Ponseti. I know it's scary to

hear she has atypical clubfeet, but you can find comfort in knowing

that she's going to be seen by the best! Thank God you didn't let

that dr. do surgery!

We're military here too (AF). Where is DH?

Jenn

> > >

> > > Hi, guys. My dd has a new ortho (her third) that we just began

> > > seeing this week. New doctor says that on Jan. 3, she has

> scheduled

> > > for a bilateral achilles tenetomy w/ a posterior ankle

> and

> > > joint subtalar joint capsulotomy. I told her that I was not

> > > comfortable with it, and told her that although she says that

> she

> > > adheres strictly with the Ponseti method, this did not sound

> like

> > > something that was part of his method (I had the global help

> > booklet

> > > with me). She says that the whole procedure is something that

> she

> > > learned at one of Dr.P's courses that he taught. This just

> doesn't

> > > sound right to me. I thought the simple, non-open incision was

> part

> > > of Dr. P's plan...Has anyone had experience with this? I

emailed

> > > Joyce at Dr. Ponseti's office and included pictures of

> > > standing and me pushing her foot to dorsiflexion (he requested

> the

> > > pics last week), but I haven't heard back, I'm sure because of

> the

> > > holidays. We have applied to go to Shriners in Tampa where a

doc

> on

> > > Dr. Ponseti's list is practicing. However the application has

to

> be

> > > approved by the chief of staff, which they said could take

> weeks. I

> > > don't know if Shriners only takes cases based on financial

need,

> > > which I'm not sure that we would qualify for...Anyway, just

> looking

> > > for info or advice about the doctor's claim that this was

> something

> > > that Ponseti teaches. BTW, I am going to put the standing pics

> (she

> > > doesn't stand on her own yet) and the dorsiflexion pics on the

> > > cfpics board, in case anyone has insight into whether they

think

> > she

> > > might need the surgery that is being suggested. Thanks, guys!

> Don't

> > > know what I would have done w/out all of the advice and info

> that

> > we

> > > have gained here, just in the past couple of weeks!

> > > - ( 2/1/05 bcf DBB 23/7)

> > >

> >

>

December 27, 2005

We live in Kissimmee, FL and see a dr. in Orlando, Dr. Herrera-Soto, he is not

on the Ponseti list, but has been thru the training (just not the approval

process) and is great. Also, Dr. Price (who IS on Ponseti's list) and Dr.

Albright are also in the same practice and also use the Ponseti method properly.

I wouldn't see any of the other dr.s in the practice as not all of them practice

the Ponseti method, but those 3 do. The number for the office is . I

don't know if they have experience with atypical foot though, but it may be

worth a try before driving to Iowa, just because it's closer. They may be able

to look at your baby's foot and tell you if they could work with it or not. They

may also be willing/able to consult with Dr. Ponseti in treatment. Good luck!

Marcia

RE: From Dr. Ponseti

Date: Mon, 26 Dec 2005 15:07:33 -0600

December 26, 2005

The pictures show the feet are not fully corrected. has a

deep crease on the medial side of the foot and the feet are held in

plantar flexion. She has what we call atypical clubfeet. SHE

DEFINITELY SHOULD NOT HAVE SURGERY SINCE IT WILL ONLY MAKE MATTERS

WORSE. These feet tend to form scar tissue which makes them very

difficult to treat. The only surgery that should be done for

atypical clubfeet is a percutaneous tendo Achilles tenotomy under

local anesthesia when the foot is in proper alignment. is

not ready for the tenotomy. I do not know if Dr. Grogan has ever

treated atypical clubfeet or if he is familiar with the

brace mentioned in my previous e-mail.

I strongly recommend you bring here if possible. The nearest

airport is at Cedar Rapids, Iowa, which is 25 miles from Iowa City.

There is a shuttle van which will bring you to Iowa City. Most of

our families stay at the Mc House. See the web site

www.uihealthcare.com/ronaldmcdonaldhouse

If you would like to speak with me by phone, the best times to reach

me are after 2:30 p.m. on Mondays (except Dec. 26 and Jan. 2),

Wednesdays, and Fridays at 319 XXX-XXXX.

I.V. Ponseti, M.D.

> >

> > Hi, guys. My dd has a new ortho (her third) that we just began

> > seeing this week. New doctor says that on Jan. 3, she has

scheduled

> > for a bilateral achilles tenetomy w/ a posterior ankle

and

> > joint subtalar joint capsulotomy. I told her that I was not

> > comfortable with it, and told her that although she says that

she

> > adheres strictly with the Ponseti method, this did not sound

like

> > something that was part of his method (I had the global help

> booklet

> > with me). She says that the whole procedure is something that

she

> > learned at one of Dr.P's courses that he taught. This just

doesn't

> > sound right to me. I thought the simple, non-open incision was

part

> > of Dr. P's plan...Has anyone had experience with this? I emailed

> > Joyce at Dr. Ponseti's office and included pictures of

> > standing and me pushing her foot to dorsiflexion (he requested

the

> > pics last week), but I haven't heard back, I'm sure because of

the

> > holidays. We have applied to go to Shriners in Tampa where a doc

on

> > Dr. Ponseti's list is practicing. However the application has to

be

> > approved by the chief of staff, which they said could take

weeks. I

> > don't know if Shriners only takes cases based on financial need,

> > which I'm not sure that we would qualify for...Anyway, just

looking

> > for info or advice about the doctor's claim that this was

something

> > that Ponseti teaches. BTW, I am going to put the standing pics

(she

> > doesn't stand on her own yet) and the dorsiflexion pics on the

> > cfpics board, in case anyone has insight into whether they think

> she

> > might need the surgery that is being suggested. Thanks, guys!

Don't

> > know what I would have done w/out all of the advice and info

that

> we

> > have gained here, just in the past couple of weeks!

> > - ( 2/1/05 bcf DBB 23/7)

> >

>

December 27, 2005

Jenn,

Okay, now you are just scaring me with the similarities! ;-D He is

in the Navy, so is at sea until May. =( 's crappy (to knee

only) were at the Naval Hospital in Naples, Italy until we moved

back here when she was 6 months old. It makes me mad to think that

it is even a possiblity that those casts (or lack thereof) might be

the reason for her being atypical...Since you guys are AF, are you

TriCare also? Have you heard from them since you asked about going

to see Dr. P? I remember you saying that you weren't sure it would

be covered...Any news on that? Please let me know!

-

> > > >

> > > > Hi, guys. My dd has a new ortho (her third) that we just

began

> > > > seeing this week. New doctor says that on Jan. 3, she has

> > scheduled

> > > > for a bilateral achilles tenetomy w/ a posterior

ankle

> > and

> > > > joint subtalar joint capsulotomy. I told her that I was not

> > > > comfortable with it, and told her that although she says

that

> > she

> > > > adheres strictly with the Ponseti method, this did not sound

> > like

> > > > something that was part of his method (I had the global help

> > > booklet

> > > > with me). She says that the whole procedure is something

that

> > she

> > > > learned at one of Dr.P's courses that he taught. This just

> > doesn't

> > > > sound right to me. I thought the simple, non-open incision

was

> > part

> > > > of Dr. P's plan...Has anyone had experience with this? I

> emailed

> > > > Joyce at Dr. Ponseti's office and included pictures of

> > > > standing and me pushing her foot to dorsiflexion (he

requested

> > the

> > > > pics last week), but I haven't heard back, I'm sure because

of

> > the

> > > > holidays. We have applied to go to Shriners in Tampa where a

> doc

> > on

> > > > Dr. Ponseti's list is practicing. However the application

has

> to

> > be

> > > > approved by the chief of staff, which they said could take

> > weeks. I

> > > > don't know if Shriners only takes cases based on financial

> need,

> > > > which I'm not sure that we would qualify for...Anyway, just

> > looking

> > > > for info or advice about the doctor's claim that this was

> > something

> > > > that Ponseti teaches. BTW, I am going to put the standing

pics

> > (she

> > > > doesn't stand on her own yet) and the dorsiflexion pics on

the

> > > > cfpics board, in case anyone has insight into whether they

> think

> > > she

> > > > might need the surgery that is being suggested. Thanks,

guys!

> > Don't

> > > > know what I would have done w/out all of the advice and info

> > that

> > > we

> > > > have gained here, just in the past couple of weeks!

> > > > - ( 2/1/05 bcf DBB 23/7)

> > > >

> > >

> >

>

December 29, 2005

,

I haven't been around much lately, but I have been catching up and

following yours and 's story. There is no way I would let this

new doctor do this release on your daughter. I simply don't see the

need for it. Why she would want to do invasive surgery when she

hasn't even tried re-casting yet is beyond me. Although she may have

learned this surgical technique from Dr. Ponseti or other doctors in

his group in Iowa, I can almost guarantee that they are not using this

technique unless it is as a last resort on a much older child. The

doctors at University of Iowa have been having such extreme success

with simply re-casting and re-doing tenotomies I can't imagine

's case would call for this much more invasive surgery,

especially at only 10 months. My advice would be to tell this doc

thanks but no thanks and, as difficult as it may be, just wait for the

Shriners application to go through. Shriners does not take financial

need into consideration, anyone can use their services. Do you know

who the doc is at Shriners who is practicing Ponseti? If you could

get ahold of the name of his nurse and talk to her directly, tell her

the situation, they may be able to speed up the process as they

usually deal with clubfoot on a quicker schedule. The other thing you

may want to consider, since is a bit older, would be to go to a

more experienced Ponseti doc who has a lot of dealings with older

babies. My recommendations would be either Dr. Dobbs in St. Louis -

he works out of the Shriners here, or Dr. Ponseti himself. I know

this would mean traveling for you but if you could get to St. Louis

the care would be free at the Shriners and would be in

excellent hands with Dr. Dobbs. I hope this helps you and I wish you

all the best.

Jenna (4/7/01) & Sammy (9/25/04, RCF, Dobbs brace 14hrs/day)

>

> Hi, guys. My dd has a new ortho (her third) that we just began

> seeing this week. New doctor says that on Jan. 3, she has scheduled

> for a bilateral achilles tenetomy w/ a posterior ankle and

> joint subtalar joint capsulotomy. I told her that I was not

> comfortable with it, and told her that although she says that she

> adheres strictly with the Ponseti method, this did not sound like

> something that was part of his method (I had the global help booklet