Re: Should I seek a 2nd opinion in central PA?

[Guest guest]

Hi , I know that it is frustrating to go through all you have. We have a

similar story with . Things just didn't go smoothly. Sometimes there are

bumps in the road even if you have a great doctor who is following the Ponseti

method and sometimes the bumps are red flags that something is not quite right.

Above all, if your mom instincts tell you that you need a second opinion, get

one! I took my daughter (bcf) to see Dr. Ponseti, traveling from Texas to Iowa

to do so...and my mom instincts were right that she was not fully corrected.

But the issues were easily resolved, she is wearing the shoes and

things have gone fairly smoothly since that time. I know that some of the smart

people here can help you find a great Ponseti doctor in your area for a second

opinion. But even if you have to travel a bit to get there, I would encourage

you to see the best doc near you that you can find. I knew that the time,

effort, money, etc. that I put into correcting 's feet up front would last

and pay off for her entire lifetime. You can't ask for a better investment than

that!

Carol and , bcf, 10/05, shoes 18/7

Should I seek a 2nd opinion in central PA?

Hi, my name is and our daughter, Brynn is 3 months old with

club foot on her right foot. She was casted in Hershey, PA at 5 days

old by a nurse practioner (who trained with Dr. Ponseti) and when the

cast came off, she had a pressure sore the size of a nickel on the

inside of the top of her ankle. We waited 3 weeks for the sore to

heal and then resumed casting with cast #1, this time with one of the

surgeons. Brynn received 5 casts and then had a tenotomy 3 weeks

ago. She still had cavus when she received the tenotomy. Her post-

tenotomy cast was removed Tuesday still with cavus all the way across

her foot. We went into Markell boots and bars to see if it would

help the cavus with a return appointment 2 weeks later. By Thursday

(2 days later) Brynn was developing a pressure sore on her GOOD

heel. After calling the nurse practioner she said to come in and the

attending surgeon would look at it and we would cast the foot again.

The surgeon mentioned that Brynn may need another tenotomy down the

line since she may lose dorsiflexion as we correct the cavus. The

nurse said she would give us a prescription for the boots

since her skin is so sensitive.

As you can imagine, I'm frustrated with how " unsmoothly " things have

gone and I'm wondering if I need to get a second opinion. I think my

only option is the Schriners Hospital in Philadelpia. I know these

doctors have made feet straight because I see them in the waiting

room when I come! Any and all advice is helpful!

[Guest guest]

Hi ,

When you describe her having cavus, and it remaining after casting

and tenotomy it sounds as if either there was some mistake in the

casting process or perhaps, you've got yourself an atypical/complex

foot there. Something that sticks out to me here however, is that

they are expecting the Markell shoes to finish correcting the feet,

which they do not do and should never be used as such. Correction of

cavus occurs early in the casting process, although the complex feet

end up with some residual cavus that usually cannot be corrected with

casting. This is where the PM FAB comes into play, as it actually

is designed to correct the residual cavus on an atypical/complex foot

with the middle strap.

Does Brynn have a lateral crease on her sole? Is her foot short, fat

or *sausage like*? What, beyond the cavus are you seeing in way of

correction? Does it look corrected other than the cavus? If so, I'd

say that you may get exactly what you need from the PM's. So now you

have a script for them.... have you ordered them yet? What is Brynn

to do while you wait for them?

If you're dealing with an atypical/complex foot you've got absolutely

no hope to keep the Markells on her feet. I would hazard a guess

that it's not her skin that is sensitive, but that either her foot is

not fully corrected or because of being atypical/complex (I am not

saying she is atypical, just giving it as a possibility) she is

slipping up in the shoes and this is what causes the sores.

I'm mixed as to whether or not you should get a second opinion. I

think I'd have to see her feet to be able to say she's corrected or

not and advise you for sure on this. If she's not fully corrected by

now, then absolutely yes, get a second opinion. The tenotomy does

not correct cavus, and unless she's lost dorsiflexion she shouldn't

need another. Going into another tenotomy with hopes of correcting

the cavus is erroneous and if that's what their solution to this is,

take your baby and run far, far away. But if she's corrected, and

has everything else in order the PM's should do the trick for you. I

caution against leaving her either unbraced or un-casted while you

wait for them though and if she's got a sore, you will need to decide

if you're going to keep up with the brace or have her back in for

holding casts. If you decide to try the bracing, please consider

using the information in the FAB Tips .pdf and finding the spot in

the shoe that the sore hits when she's properly seated deeply into

the heel (not where the sore hits when she's slipped, but rather

where the sore is when she's in them properly. if you don't know how

to do this, let me know) and removing the offending part of the heel

so that she doesn't hurt. This is about the only way other than

healing casts to heal these sores, keeping the shoes on with ANY

pressure on that sore will just make it worse.

hope this helps some, and please let us know anything else you have

questions about. If you have any pictures of her feet, that would be

great to help us help you troubleshoot this.

Hang in there, this will get better. Promise!

Kori

At 05:24 AM 6/17/2006, you wrote:

>Hi, my name is and our daughter, Brynn is 3 months old with

>club foot on her right foot. She was casted in Hershey, PA at 5 days

>old by a nurse practioner (who trained with Dr. Ponseti) and when the

>cast came off, she had a pressure sore the size of a nickel on the

>inside of the top of her ankle. We waited 3 weeks for the sore to

>heal and then resumed casting with cast #1, this time with one of the

>surgeons. Brynn received 5 casts and then had a tenotomy 3 weeks

>ago. She still had cavus when she received the tenotomy. Her post-

>tenotomy cast was removed Tuesday still with cavus all the way across

>her foot. We went into Markell boots and bars to see if it would

>help the cavus with a return appointment 2 weeks later. By Thursday

>(2 days later) Brynn was developing a pressure sore on her GOOD

>heel. After calling the nurse practioner she said to come in and the

>attending surgeon would look at it and we would cast the foot again.

>The surgeon mentioned that Brynn may need another tenotomy down the

>line since she may lose dorsiflexion as we correct the cavus. The

>nurse said she would give us a prescription for the boots

>since her skin is so sensitive.

>

>As you can imagine, I'm frustrated with how " unsmoothly " things have

>gone and I'm wondering if I need to get a second opinion. I think my

>only option is the Schriners Hospital in Philadelpia. I know these

>doctors have made feet straight because I see them in the waiting

>room when I come! Any and all advice is helpful!

>

>

[Guest guest]

Hi Kori,

Thanks so much for your lengthy email! It feels so nice to have

support, even via email. In my opinion, the cavus wasn't corrected

first because of her pressure sore. They were so gentle in applying

the first cast the second time around that her foot moved more

towards the " normal " position but the cavus wasn't corrected. Last

wekk, I think the nurse wanted to use the brace for 2 weeks because

there was no surgeon available that day when her post-tenotomy cast

came off. Then when I called last Thursday, the surgeon was

available so we went forward with casting. I did hear from this

surgeon after I emailed the whole team and I feel confident with his

plan going forward. I was orginally supposed to see him from the

first appointment but since we was set to be in Germany for 6 weeks,

we started with the other surgeon.

About her crease, yes, it does go all the way across her foot. Her

foot still is " puffy " , especially on the top of the foot near the

toes. Her foot is smaller but not the 1.5-2 cm that typically

characterizes the atypical foot. Her foot is straighter that it was

when she was born, it doesn't hold the abduction when it is out of

the cast and there was dorsiflexion after the tenotomy when she was

stretched. The sole of her foot does look bigger, or fatter, just

makes a wider footprint than the good foot. Maybe this all means it

is atypical. My fear is it's because they didn't address the cavus

first.

To sum up, her foot does not look normal yet. I will send you a

picture to your email, not sure how to do it to the group. They will

only do a second tenotomy if after doing another 6-8 casts the

dorsiflexion is compromised. The surgeon said we need another 4-6

casts to fix the cavus, then work on the other deformities. The

surgeon did give his opinion that her foot is atypical and on the

more severe side of things, which may warrant an open release in the

future, which he wants to avoid at all costs. The nurse is looking

into how to order the 's while still casting. The plan is to

use them after her foot is fully fixed. I suppose we'll use a

holding casts while they are being made? I don't have the

presciption for that yet and need to jump through the insurance hoops

to make sure another brace is covered.

Thanks so much again for your time and I will send you a pic from

before the tenotomy...I didn't take a picture once out of the post-

tenotomy cast.

>

> >Hi, my name is and our daughter, Brynn is 3 months old with

> >club foot on her right foot. She was casted in Hershey, PA at 5

days

> >old by a nurse practioner (who trained with Dr. Ponseti) and when

the

> >cast came off, she had a pressure sore the size of a nickel on the

> >inside of the top of her ankle. We waited 3 weeks for the sore to

> >heal and then resumed casting with cast #1, this time with one of

the

> >surgeons. Brynn received 5 casts and then had a tenotomy 3 weeks

> >ago. She still had cavus when she received the tenotomy. Her post-

> >tenotomy cast was removed Tuesday still with cavus all the way

across

> >her foot. We went into Markell boots and bars to see if it would

> >help the cavus with a return appointment 2 weeks later. By Thursday

> >(2 days later) Brynn was developing a pressure sore on her GOOD

> >heel. After calling the nurse practioner she said to come in and

the

> >attending surgeon would look at it and we would cast the foot

again.

> >The surgeon mentioned that Brynn may need another tenotomy down the

> >line since she may lose dorsiflexion as we correct the cavus. The

> >nurse said she would give us a prescription for the boots

> >since her skin is so sensitive.

> >

> >As you can imagine, I'm frustrated with how " unsmoothly " things

have

> >gone and I'm wondering if I need to get a second opinion. I think

my

> >only option is the Schriners Hospital in Philadelpia. I know these

> >doctors have made feet straight because I see them in the waiting

> >room when I come! Any and all advice is helpful!

> >

> >

>

>

>

[Guest guest]

Kori,

I made an album named " Brynn " for you to check out some photos.

>

> >Hi, my name is and our daughter, Brynn is 3 months old with

> >club foot on her right foot. She was casted in Hershey, PA at 5

days

> >old by a nurse practioner (who trained with Dr. Ponseti) and when

the

> >cast came off, she had a pressure sore the size of a nickel on the

> >inside of the top of her ankle. We waited 3 weeks for the sore to

> >heal and then resumed casting with cast #1, this time with one of

the

> >surgeons. Brynn received 5 casts and then had a tenotomy 3 weeks

> >ago. She still had cavus when she received the tenotomy. Her post-

> >tenotomy cast was removed Tuesday still with cavus all the way

across

> >her foot. We went into Markell boots and bars to see if it would

> >help the cavus with a return appointment 2 weeks later. By Thursday

> >(2 days later) Brynn was developing a pressure sore on her GOOD

> >heel. After calling the nurse practioner she said to come in and

the

> >attending surgeon would look at it and we would cast the foot

again.

> >The surgeon mentioned that Brynn may need another tenotomy down the

> >line since she may lose dorsiflexion as we correct the cavus. The

> >nurse said she would give us a prescription for the boots

> >since her skin is so sensitive.

> >

> >As you can imagine, I'm frustrated with how " unsmoothly " things

have

> >gone and I'm wondering if I need to get a second opinion. I think

my

> >only option is the Schriners Hospital in Philadelpia. I know these

> >doctors have made feet straight because I see them in the waiting

> >room when I come! Any and all advice is helpful!

> >

> >

>

>

>

[Guest guest]

,

I don't have a lot of time right now and I'm coming in without reading

the whole thread on this message, but I just wanted to second what

Kori said. I took a look at the pictures you posted and my heart just

breaks for your little girl to have had to endure these terrible

pressure sores. I would also agree that you should probably not let

the current doctor(s) mess around with her foot as they may be causing

more harm than good. I have to say that I think your daughter needs a

VERY experienced Ponseti doctor to get her foot to a corrected

position at this point. I highly recommend going to Dr. Herzenberg in

Baltimore, I know it is a bit more of a drive but it will be well

worth it. In fact, if you can manage it, I would personally suggest

going straight to Dr. Ponseti. There are lots of resources to help

you get where you need to go to have her foot properly corrected, and

we can help you! Please hang in there and we'll help you figure out

what the next step needs to be.

Mom to Jenna (4/7/01) & Sam (9/25/04, RCF, Dobbs brace, 12-14hrs/day)

> > >

> > > >Hi, my name is and our daughter, Brynn is 3 months old with

> > > >club foot on her right foot. She was casted in Hershey, PA at 5

> >days

> > > >old by a nurse practioner (who trained with Dr. Ponseti) and when

> >the

> > > >cast came off, she had a pressure sore the size of a nickel on the

> > > >inside of the top of her ankle. We waited 3 weeks for the sore to

> > > >heal and then resumed casting with cast #1, this time with one of

> >the

> > > >surgeons. Brynn received 5 casts and then had a tenotomy 3 weeks

> > > >ago. She still had cavus when she received the tenotomy. Her post-

> > > >tenotomy cast was removed Tuesday still with cavus all the way

> >across

> > > >her foot. We went into Markell boots and bars to see if it would

> > > >help the cavus with a return appointment 2 weeks later. By Thursday

> > > >(2 days later) Brynn was developing a pressure sore on her GOOD

> > > >heel. After calling the nurse practioner she said to come in and

> >the

> > > >attending surgeon would look at it and we would cast the foot

> >again.

> > > >The surgeon mentioned that Brynn may need another tenotomy down the

> > > >line since she may lose dorsiflexion as we correct the cavus. The

> > > >nurse said she would give us a prescription for the boots

> > > >since her skin is so sensitive.

> > > >

> > > >As you can imagine, I'm frustrated with how " unsmoothly " things

> >have

> > > >gone and I'm wondering if I need to get a second opinion. I think

> >my

> > > >only option is the Schriners Hospital in Philadelpia. I know these

> > > >doctors have made feet straight because I see them in the waiting

> > > >room when I come! Any and all advice is helpful!

> > > >

> > > >

> > >

> > >

> > >