Re: 9 week old with clubfeet

[Guest guest]

Most of the group is probably sleeping now. My dear lcf son had a late

nap, so I'm up right now. So here goes.

First of all, according to the official list - see

http://www.uihealthcare.com/topics/medicaldepartments/orthopaedics/clubfeet/phys\

icians.html

- there are two doctors certified for the method in North Carolina, one in

Charlotte, one in Chapel Hill. I don't feel like digging into maps too

much right now, but neither one should be more than a couple of hours away

from you. If anyone on the list can vouch for these guys from personal

experience, that might help you to choose. But considering that people

come from all over the country and even from overseas to Iowa, a couple of

hour drive is nothing. I'm sure people will chime in if they know these

doctors.

Why certified? It sounds like your doctor may be attempting the Ponseti

method, but clearly it's not going well. When done right, although there

are always times when casts slip and sores do happen, in a relatively short

series of casts your son should get totally corrected. The one exception

is the very last part, which is what the tenotomy is for. It sounds like

your doctor is talking about doing that, but it also sounds like your son's

feet may not be completely corrected. In short, the process is 1) correct

the feet except for dorsiflexion using the casts, 2) tenotomy to allow

greater dorsiflextion followed by a several week cast, 3) shoes w/bar (fab)

23/7 for a few months - to keep the fully corrected foot corrected, 4) fab

12/7 for a couple of years. If step 1 isn't complete, step 2 shouldn't be

attempted. Dr. Ponseti certifies that doctors haven't just taken the

classes, but also are having success with the method. It sounds like your

doctor means well, but isn't getting it. Doing the tenotomy now at best

won't help, at worst might mess things up.

So, don't do the surgery yet. If it is just the tenotomy, you're likely

(though not guaranteed) to need it later. Go see a doctor who has proven

experience with the method and see if you can get the correction completely

done first.

As far as local vs. general. We had just a local, and it was very

quick. My wife couldn't believe that the bandage was just a band-aid (and

of course the cast on top of that for a few weeks). I couldn't see putting

a 9 week old through general anesthesia just for this, but I know people

have had it.

I'm sure if I missed something, the rest of the group will help out.

Seth

(meir, lcf, 1/29/04, fab 12/7)

At 04:26 AM 3/3/2006 +0000, you wrote:

>Thank you all so much for your advice. I am so thankful to God that I

>came across this group. I live in North Carolina ( Wilkes County ).

>My son is currently being treated at Wake Forsyth University Hospital

>in Winston Salem,NC. The surgery that I am under the impression that

>he is getting is the clipping of his Achilles tendon. In which his

>doctor often refers to it as a heel cord release. Most of the reponses

>have stated that this type of surgery was more of a outpatient doctor's

>office procedure. His physician is wanting to do general anesthesia

>but states it will only take about five minutes to do the surgery. Is

>this something that is normal? I have read alot of information that

>points to surgurical procedures often lead to pain and stiffness later

>on in life. I not really sure if the casting is been done right. His

>feet are swollen a whole lot. With the removal of his last cast, his

>big toe was raw from the casting. One week his foot had sled up into

>the cast. I am just really concerned about everything. I would

>greatly appreciate any referrals anyone may have. Thanks again for the

>support. I do greatly appreciate it.

>

>Nan

>

>

>

>

>

>

[Guest guest]

Nan,

Some physicians do refer to the Achilles tenotomy as a " heel cord release " . At

the same time, other physicians are referring to something more involved when

they use the same term. It's an ambiguous one. It doesn't help that some

physicians prefer to do the tenotomy--especially on such a young child--under

local anesthesia while others prefer general anesthesia regardless of age.

Your description of the casting, on the other hand, raises some flags. They

aren't quite bright red flags, but concerning enough (casts that slip usually

mean either that the casting is not being done properly or that the foot is not

your typical clubfoot) that I would encourage you to seek out a second opinion.

You are lucky to live in the same state as one of the best clubfoot doctors in

the country. Dr Frick's own son was born with clubfoot and after seeing

first-hand the aftermath of surgical correction, he has devoted himself to

treating clubfoot in the least invasive way possible. Here is his contact

information:

Frick, M.D.

5939 Cabell View Ct.

Charlotte, NC 28232-3286

Tel:

Here is a site, put together by a parent, that is full of information on the

Ponseti method of clubfoot correction:

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

The following booklet (in pdf) is another wonderful resource:

http://www.global-help.org/publications/Ponseti.2Ed.pdf

Please let us know if there are other questions we can help you with. We're

wishing you and your son all the best.

Naomi

The Family

Naomi Hannah(2/21/1) Jonah(6/20/3, corrected BCF, FAB 12-14/7)

shyrod868 wrote: Thank you all so much for your

advice. I am so thankful to God that I

came across this group. I live in North Carolina ( Wilkes County ).

My son is currently being treated at Wake Forsyth University Hospital

in Winston Salem,NC. The surgery that I am under the impression that

he is getting is the clipping of his Achilles tendon. In which his

doctor often refers to it as a heel cord release. Most of the reponses

have stated that this type of surgery was more of a outpatient doctor's

office procedure. His physician is wanting to do general anesthesia

but states it will only take about five minutes to do the surgery. Is

this something that is normal? I have read alot of information that

points to surgurical procedures often lead to pain and stiffness later

on in life. I not really sure if the casting is been done right. His

feet are swollen a whole lot. With the removal of his last cast, his

big toe was raw from the casting. One week his foot had sled up into

the cast. I am just really concerned about everything. I would

greatly appreciate any referrals anyone may have. Thanks again for the

support. I do greatly appreciate it.

Nan

[Guest guest]

I'm just going to pipe in here too, and say that the tenotomy scars from barely

two months ago are virtually invisible on our son - I have to really search for

them to find them.

Seth Katz wrote: Most of the group is probably

sleeping now. My dear lcf son had a late

nap, so I'm up right now. So here goes.

First of all, according to the official list - see

http://www.uihealthcare.com/topics/medicaldepartments/orthopaedics/clubfeet/phys\

icians.html

- there are two doctors certified for the method in North Carolina, one in

Charlotte, one in Chapel Hill. I don't feel like digging into maps too

much right now, but neither one should be more than a couple of hours away

from you. If anyone on the list can vouch for these guys from personal

experience, that might help you to choose. But considering that people

come from all over the country and even from overseas to Iowa, a couple of

hour drive is nothing. I'm sure people will chime in if they know these

doctors.

Why certified? It sounds like your doctor may be attempting the Ponseti

method, but clearly it's not going well. When done right, although there

are always times when casts slip and sores do happen, in a relatively short

series of casts your son should get totally corrected. The one exception

is the very last part, which is what the tenotomy is for. It sounds like

your doctor is talking about doing that, but it also sounds like your son's

feet may not be completely corrected. In short, the process is 1) correct

the feet except for dorsiflexion using the casts, 2) tenotomy to allow

greater dorsiflextion followed by a several week cast, 3) shoes w/bar (fab)

23/7 for a few months - to keep the fully corrected foot corrected, 4) fab

12/7 for a couple of years. If step 1 isn't complete, step 2 shouldn't be

attempted. Dr. Ponseti certifies that doctors haven't just taken the

classes, but also are having success with the method. It sounds like your

doctor means well, but isn't getting it. Doing the tenotomy now at best

won't help, at worst might mess things up.

So, don't do the surgery yet. If it is just the tenotomy, you're likely

(though not guaranteed) to need it later. Go see a doctor who has proven

experience with the method and see if you can get the correction completely

done first.

As far as local vs. general. We had just a local, and it was very

quick. My wife couldn't believe that the bandage was just a band-aid (and

of course the cast on top of that for a few weeks). I couldn't see putting

a 9 week old through general anesthesia just for this, but I know people

have had it.

I'm sure if I missed something, the rest of the group will help out.

Seth

(meir, lcf, 1/29/04, fab 12/7)

At 04:26 AM 3/3/2006 +0000, you wrote:

>Thank you all so much for your advice. I am so thankful to God that I

>came across this group. I live in North Carolina ( Wilkes County ).

>My son is currently being treated at Wake Forsyth University Hospital

>in Winston Salem,NC. The surgery that I am under the impression that

>he is getting is the clipping of his Achilles tendon. In which his

>doctor often refers to it as a heel cord release. Most of the reponses

>have stated that this type of surgery was more of a outpatient doctor's

>office procedure. His physician is wanting to do general anesthesia

>but states it will only take about five minutes to do the surgery. Is

>this something that is normal? I have read alot of information that

>points to surgurical procedures often lead to pain and stiffness later

>on in life. I not really sure if the casting is been done right. His

>feet are swollen a whole lot. With the removal of his last cast, his

>big toe was raw from the casting. One week his foot had sled up into

>the cast. I am just really concerned about everything. I would

>greatly appreciate any referrals anyone may have. Thanks again for the

>support. I do greatly appreciate it.

>

>Nan

>

>

>

>

>

>

[Guest guest]

Nan,

Welcome. I also live in NC. I have recently moved to Charlotte. I am not

sure how far that is from your location. I wanted to recommend Dr. Frick to

you. He is one of the physicians highly recommended by Dr. Ponseti. I don't

know if you want to get a second opinion, but it can't hurt. Please be sure

before your son has the tenotomy that his feet are corrected/rotated to 70

degrees first. You explained his feet were still stiff and didn't look like

much improvement. If this is the case, then he is surely not ready for the

tenotomy. At this point, his feet should be corrected unless he has complex

clubfoot or atypical.

Whatever you decide, we are here to answer your questions and continue to give

advice.

and , 3-2-04, bcf, P/M's 14 hours

shyrod868 wrote:

Thank you all so much for your advice. I am so thankful to God that I

came across this group. I live in North Carolina ( Wilkes County ).

My son is currently being treated at Wake Forsyth University Hospital

in Winston Salem,NC. The surgery that I am under the impression that

he is getting is the clipping of his Achilles tendon. In which his

doctor often refers to it as a heel cord release. Most of the reponses

have stated that this type of surgery was more of a outpatient doctor's

office procedure. His physician is wanting to do general anesthesia

but states it will only take about five minutes to do the surgery. Is

this something that is normal? I have read alot of information that

points to surgurical procedures often lead to pain and stiffness later

on in life. I not really sure if the casting is been done right. His

feet are swollen a whole lot. With the removal of his last cast, his

big toe was raw from the casting. One week his foot had sled up into

the cast. I am just really concerned about everything. I would

greatly appreciate any referrals anyone may have. Thanks again for the

support. I do greatly appreciate it.

Nan

[Guest guest]

Nan,

Naomi is right. The terms Heel Cord Release and/or Tenotomy are very vague.

The Ponseti Method does do a tenotomy in the majority of cases - but it's an

extremely minor thing. Other doctors have gone to the other end of the spectrum

mutilating the tendon. It's really key that you understand his method of

tenotomy to avoid the disaster that could happen. The risk is scar tissues that

build up and create massive problems later.

All in all the casting sounds a little " off " too, in my opinion. Enough sounds

suspect that I'd really urge you to cancel the tenotomy until you seek out

another opinion. Your child has every chance at this young age to get total

correction, simply and quickly and with out pain or surgery - but it's just not

something any old doctor can provide.

Please keep doing your own research as you go, too. The most frusterating thing

I find on this board are parents who put their entire trust in their doctor's

opinions with out every educating themselves or questioning anything. " He is

Highly Recommended! " is a phrase we hear a lot. That's great, but Highly

Recommended doesn't always mean he's the guy who knows how to fix this

particular birth defect to the best of it's ability, kwim?

We've even run in to doctors we previously recommended for doing the POnseti

Method whom we find out have changed the method with less than good results. SO

even our recommendations have gone sour in the past a few times! We really

strive here to keep up with which doctor is doing it right, and which ones are

nt.

A parent's own knowledge here is really key to catch problems early enough to

avoid them. INferior treatments often cause the child more damage than the

child was initially born with. That was the case with my 7 year old son. ON

the other hand, my 2 year old who was treated by Dr. Ponseti enjoys perfect

feet.

Mostly though, follow your instinct. At this young age you are not in a huge

hurry, you have time to find the right alternative so don't let any doctor bully

you in to something, OK?.

best of luck,

shawnee

Re: 9 week old with clubfeet

Nan,

Some physicians do refer to the Achilles tenotomy as a " heel cord release " .

At the same time, other physicians are referring to something more involved when

they use the same term. It's an ambiguous one. It doesn't help that some

physicians prefer to do the tenotomy--especially on such a young child--under

local anesthesia while others prefer general anesthesia regardless of age.

Your description of the casting, on the other hand, raises some flags. They

aren't quite bright red flags, but concerning enough (casts that slip usually

mean either that the casting is not being done properly or that the foot is not

your typical clubfoot) that I would encourage you to seek out a second opinion.

You are lucky to live in the same state as one of the best clubfoot doctors in

the country. Dr Frick's own son was born with clubfoot and after seeing

first-hand the aftermath of surgical correction, he has devoted himself to

treating clubfoot in the least invasive way possible. Here is his contact

information:

Frick, M.D.

5939 Cabell View Ct.

Charlotte, NC 28232-3286

Tel:

Here is a site, put together by a parent, that is full of information on the

Ponseti method of clubfoot correction:

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

The following booklet (in pdf) is another wonderful resource:

http://www.global-help.org/publications/Ponseti.2Ed.pdf

Please let us know if there are other questions we can help you with. We're

wishing you and your son all the best.

Naomi

The Family

Naomi Hannah(2/21/1) Jonah(6/20/3, corrected BCF, FAB 12-14/7)

shyrod868 wrote: Thank you all so much for your

advice. I am so thankful to God that I

came across this group. I live in North Carolina ( Wilkes County ).

My son is currently being treated at Wake Forsyth University Hospital

in Winston Salem,NC. The surgery that I am under the impression that

he is getting is the clipping of his Achilles tendon. In which his

doctor often refers to it as a heel cord release. Most of the reponses

have stated that this type of surgery was more of a outpatient doctor's

office procedure. His physician is wanting to do general anesthesia

but states it will only take about five minutes to do the surgery. Is

this something that is normal? I have read alot of information that

points to surgurical procedures often lead to pain and stiffness later

on in life. I not really sure if the casting is been done right. His

feet are swollen a whole lot. With the removal of his last cast, his

big toe was raw from the casting. One week his foot had sled up into

the cast. I am just really concerned about everything. I would

greatly appreciate any referrals anyone may have. Thanks again for the

support. I do greatly appreciate it.

Nan

[Guest guest]

Nan,

I am in NC too and strongly recommend that you wait on the tenotomy

and go to see Dr. Frick for a second opinion ASAP. I agree with the

others who have an uneasy feeling; the cast should not have slipped,

the foot should not look 'swollen', you should have seen steady

progress and improvement in how the foot looks.

You don't want the doctor at Baptist doing the tenotomy if there's

any chance the foot isn't completely corrected and ready for it. If

it's not, it can make full nonsurgical correction later more

difficult, and might result in a need for a second tenotomy, which is

best avoided.

As of a few years ago, the docs at Baptist were skeptical about the

Ponseti method. Maybe things have changed, but their results are the

main clue.. Have you asked them how long they've been treating

clubfoot in this way? What percentage of their patients are able to

be corrected nonsurgically? What they do if casting does not work?

As far as I know, none have been to Iowa or have any contact with Dr.

Ponseti. Dr. Frick, on the other hand, works very closely with him

and is one of the most experienced doctors in the method, speaking at

conferences, writing papers, etc., and has treated children

successfully with it for quite a few years.

I know you would never regret going to see him for a second opinion.

And if you don't, you might always wonder. If you do call, be sure to

get past an appointment desk to his personal secretary, so you can

get right in. Otherwise some unknowing receptionist might give you an

appointment a month or so away.

I will email you offlist too.. hang in there.. we're eager to help

you. Don't get overwhelmed.. Many many of us have been in the same

spot. you can get through it and everything will work out,

and Claire

>

> Thank you all so much for your advice. I am so thankful to God

that I

> came across this group. I live in North Carolina ( Wilkes

County ).

> My son is currently being treated at Wake Forsyth University

Hospital

> in Winston Salem,NC. The surgery that I am under the impression

that

> he is getting is the clipping of his Achilles tendon. In which his

> doctor often refers to it as a heel cord release. Most of the

reponses

> have stated that this type of surgery was more of a outpatient

doctor's

> office procedure. His physician is wanting to do general

anesthesia

> but states it will only take about five minutes to do the surgery.

Is

> this something that is normal? I have read alot of information

that

> points to surgurical procedures often lead to pain and stiffness

later

> on in life. I not really sure if the casting is been done right.

His

> feet are swollen a whole lot. With the removal of his last cast,

his

> big toe was raw from the casting. One week his foot had sled up

into

> the cast. I am just really concerned about everything. I would

> greatly appreciate any referrals anyone may have. Thanks again for

the

> support. I do greatly appreciate it.

>

> Nan

>

[Guest guest]

I know you have had lots of replies from other people

but I just wanted to add our personal experiences

Our son was first treated at our local hospital which

had just been finished its training in the Ponseti

method and although they did there best they had

nothing to compare him to and unfortunately they

recommended a tenotomy before his feet were fully

corrected. After 3 weeks he came out of his cast and

then we found his feet definately wouldn't fit in the

shoes properly. As you can imagine at this point I was

fearing the worst but we found this site and got a

second opinion from a fully certified Ponseti doctor

and his feet were made perfect.

Unfortunately he also had to have a second tenotomy

and although this has all turned out OK our doctor did

comment that the second tenotomy was harder as it was

already a bit tight in there because of the first one.

He actually came out of the tenotomy without full

dorsiflexion and it was only after several weeks in

the s that he was classed as having full

movement.

So like all the other replies, what I'm trying to say

is don't do the tenotomy unless you are 100% sure your

son's feet are ready as although it is not a major

procedure you want to avoid multiple tenotomies.

As to the issue of Local or General it is a hard one.

Our son had his first tenotomy at 13 weeks old and our

doctor wanted to do it under general. I went out and

got a second opinion about this (from the Ponseti

doctor we've now ended up seeing) and she said to me

the risks of general were significantly higher on a

young baby under 4 months old and since the tenotomy

was such a small procedure to seek to have it done

under local anaesthetic. We pressurised our doctor and

he carried out his FIRST EVER tenotomy under local. I

personally couldn't face seeing the procedure (yes I

know I was the one to insist it had to be done under

local) but my boyfriend went and he said it was

absolutely fine. Ethan didn't like beign held down so

firmly and screamed rather a lot but he was back down

with me 10 minues later and they put his casts on

whilst I fed him. He was absolutely fine afterwards

and didn't even need any further pain relief than that

given at the hospital before we left.

The second tenotomy happened at just over 6 months old

and it was performed under general this time by the

Ponseti trained doctor I got the advice from the first

time that we were now seeing. She said that this time

the risks of him moving were higher and although she

would carry it out under local if we wanted it was

safer to do it under general so that he wouldn't move

at a critical point. He had a general anaesthetic and

we went home that day. Again he seemed absolutely fine

and it seemed as if nothing had happened.

Sorry this post is so long but I thought it might be

helpful to hear from someone who has experienced 2

tenotomies and also had experience of Local and

General. If you have any more questions I'd be happy

to try and answer

Kathy and Ethan (s 18/24 - and He'll be one

year old on Monday!)

--- shyrod868 wrote:

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

Thank you all so much for your advice. I am so

thankful to God that I

came across this group. I live in North Carolina (

Wilkes County ).

My son is currently being treated at Wake Forsyth

University Hospital

in Winston Salem,NC. The surgery that I am under the

impression that

he is getting is the clipping of his Achilles tendon.

In which his

doctor often refers to it as a heel cord release. Most

of the reponses

have stated that this type of surgery was more of a

outpatient doctor's

office procedure. His physician is wanting to do

general anesthesia

but states it will only take about five minutes to do

the surgery. Is

this something that is normal? I have read alot of

information that

points to surgurical procedures often lead to pain and

stiffness later

on in life. I not really sure if the casting is been

done right. His

feet are swollen a whole lot. With the removal of his

last cast, his

big toe was raw from the casting. One week his foot

had sled up into

the cast. I am just really concerned about

everything. I would

greatly appreciate any referrals anyone may have.

Thanks again for the

support. I do greatly appreciate it.

Nan