Re: Foot pain later in life?????

[Guest guest]

Tina Bowen wrote:

> I understand that children that have surgery to correct cf experience

> pain in their feet later in life. Does anyone know why this is? What

> causes the pain?

IANAMD.

The cause is generally osteoarthritis -- bone arthritis. Part of the

aim of surgery is to make the bones and joints in the foot look

normal. Unfortunately, doing this often involves removing connective

tissue in the joints (capsulotomy). Later in life, the joints start to

degenerate, and pain is the result. This is a very simplified (and

possibly not quite correct) explanation; or Dr. Brown may be

able to provide more details.

> Are there any stats on how many of these children

> experience pain later in life?

POSNA recently posted the abstacts of several pediatric orthopedic

studies on their website, including a few studies on clubfoot. You can

see them by at:

http://www.posna.org/Meetings/Vancouver/abstracts3.htm#FT_PMRFollowup

That study is a 16-year followup of posteromedial release surgery.

While most patients reported no foot pain, 15 of the 41 subjects

reported mild pain, 4 reported moderate pain, and 0 reported severe

pain. 4 had major followup surgery (cuboid osteotomies or

arthrodesis). So the expectation is that most, but not all, people

treated surgically will be pain-free.

Ponseti, on the other hand, concedes that his method result in feet

with an internal structure that is " funny " -- the bones aren't

necessarily lined up the way they're supposed to be, and this is one of

the reasons Ponseti's method is resisted by many doctors. But the end

result is feet which are functional, flexible, pain-free and

aesthetically look like feet should look. A 30-year followup study on

the Ponseti method reported that no degenerative osteoarthritis was

detected in any of the 45 patients studied. An article about this

study is at:

http://www.uihealthcare.com/NewsEvents/Currents/Vol1Issue1/Clubfoot.html

These and other links can be found at the Clubfoot Information Network

medical information page:

http://www.clubfoot.net/medical.php3

Masoner

[Guest guest]

Hi,

I am also concerned please forward any info you receive.

Thanks

[Guest guest]

It's important to note that the patients were all between 14 & 16 when the

study ended. Dr Ponseti says that the problems become more serious when

patients hit their late 20's, early 30s. With 15/41 and 4/41 reporting some

amount of pain it adds up to almost 50% feeling mild to moderate (mostly

mild) pain before they even reach their 20s.

Dan

Re: Foot pain later in life?????

> Tina Bowen wrote:

>

> > I understand that children that have surgery to correct cf experience

> > pain in their feet later in life. Does anyone know why this is? What

> > causes the pain?

>

> IANAMD.

>

> The cause is generally osteoarthritis -- bone arthritis. Part of the

> aim of surgery is to make the bones and joints in the foot look

> normal. Unfortunately, doing this often involves removing connective

> tissue in the joints (capsulotomy). Later in life, the joints start to

> degenerate, and pain is the result. This is a very simplified (and

> possibly not quite correct) explanation; or Dr. Brown may be

> able to provide more details.

>

> > Are there any stats on how many of these children

> > experience pain later in life?

>

> POSNA recently posted the abstacts of several pediatric orthopedic

> studies on their website, including a few studies on clubfoot. You can

> see them by at:

>

> http://www.posna.org/Meetings/Vancouver/abstracts3.htm#FT_PMRFollowup

>

> That study is a 16-year followup of posteromedial release surgery.

> While most patients reported no foot pain, 15 of the 41 subjects

> reported mild pain, 4 reported moderate pain, and 0 reported severe

> pain. 4 had major followup surgery (cuboid osteotomies or

> arthrodesis). So the expectation is that most, but not all, people

> treated surgically will be pain-free.

>

> Ponseti, on the other hand, concedes that his method result in feet

> with an internal structure that is " funny " -- the bones aren't

> necessarily lined up the way they're supposed to be, and this is one of

> the reasons Ponseti's method is resisted by many doctors. But the end

> result is feet which are functional, flexible, pain-free and

> aesthetically look like feet should look. A 30-year followup study on

> the Ponseti method reported that no degenerative osteoarthritis was

> detected in any of the 45 patients studied. An article about this

> study is at:

>

> http://www.uihealthcare.com/NewsEvents/Currents/Vol1Issue1/Clubfoot.html

>

>

> These and other links can be found at the Clubfoot Information Network

> medical information page:

>

> http://www.clubfoot.net/medical.php3

>

> Masoner

>

> ------------------------------------------------------------------------

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>

[Guest guest]

Tina,

As far as your questions about clubfoot surgery and the experiencing

of pain later in life, I don't think that there have yet been any

long term studies done on outcomes that go beyond about an average of

16 years of age. So to some degree, the specific information is not

available although the ankle ligament and joint surgery has existed

since 1906 and has been the prevailing method of treatment since the

mid 1950's. There should at least be 40 plus years of results

available to be studied, but so far no one who has the access to the

patients where the treatment method has been " primarily surgical

after limited casting " has done those kind of longer term studies.

When we were researching the Ponseti method for our own child over a

year ago, we read that Dr. Ponseti had 4 long term studies, with the

longest for patients between about 27 and 45 years of age that

reported " no significant difference in function or performance when

compared to a population of similar age born with normal feet " . Then

as a part of our research, I talked to 5 surgically oriented doctors

and asked all of them if there were any long term outcome studies on

how children treated with surgical methods did as adults in their

30's. None of them knew of any such studies. When I asked one

doctor how a child would do when they were in their 30's or 40's as

related to pain or any other problems, he said, " I don't know, I have

only been doing this for 10 years. "

A few of them did say that the surgery keeps inproving and using

smaller instruments and newer techniques, but there are not any

longer term studies. I did talk to one doctor who said that he had

been treated clubfoot children for 35 years and did surgery for 90%

of the children he saw. If I remeber correctly, he indicated that he

only had 6 children under 18 years of age who had pain. I did not

ask him about his patients between 18 and 35 years.

My opinion that that most doctors have been trained that the non-

surgical methods they were taught are not usually successful except

for very mild feet and therefor their skills should be focused on

doing the best that is possible with surgical methods.

With Dr. Ponseti's method and studies, they have included all

children that they treated including the few that even with the

Ponseti method had to have some part of the surgery. Both Dr.

Ponseti and Dr. Herzenberg have told me that even if the Ponseti

method is not successful, the additional stretching that is done

makes it so that if they have to do the surgery, that they can do a

lot less inside the foot than would be done at other clinics.

Other than whatever the risk is for pain later in life, there are a

number of other risks that exist as well with a mainly surgical

approach. I have tried to summerize some of those items in a parents

research paper I have put together from some clubfoot treatment books

that I have read as well as other sources. That paper as well as a

copy of the introduction to Dr. Ponseti's 1996 book can be found in

the files section of this groups homepage at

/files/nosurgery4clubfoot/Reference+Information/

It should also be said that surgically oriented doctors can also be

successful in treating clubfoot without the ankle ligament and joint

surgery, but it is just that the percentage is typically low (most

seem to be from 5-35% of the time) when compared to the Ponseti

method (at 95% of the time).

Please remember that these are just my opinions based on what I have

read and those who I have talked to. I think that all of us are

still trying to understand clubfoot in general and what specifically

we can be doing for our own children.

We all hope that things work out for the best for your child and

family.

and (3-17-99)

http://www.vh.org/Patients/IHB/Ortho/Peds/Clubfeet/Egbert.html

> I understand that children that have surgery to correct cf

experience

> pain in their feet later in life. Does anyone know why this is?

What

> causes the pain? Are there any stats on how many of these children

> experience pain later in life? Currently Chloe is being treated the

> traditional way by a surgical doctor but so far it looks like she

won't

> need surgery. Her feet are in the correct position and she is

wearing

> the dbb 24/7. One of the things that concerns me about putting her

> through surgery (should things change and her Dr suggest it) is the

foot

> pain later in life. So I wanted to learn more about it.

>

>

> ________________________________________________________________

> YOU'RE PAYING TOO MUCH FOR THE INTERNET!

> Juno now offers FREE Internet Access!

> Try it today - there's no risk! For your FREE software, visit:

> http://dl.www.juno.com/get/tagj.

[Guest guest]

,

I find your contribution to this board educational and has helped our family

so much we are just thanking you for your kindness and understanding. Other

question.. Is where anything possible that we could do to prevent regression

while useing the DBB? Zach is getting his cast off on Tuesday and getting

into the DBB for 24 hours a day for the three months as Dr. Ponsti also

recommends in this treatment. We are not sure if Zach will require a longer

period than the three months as no one could tell yet. What percent of

children remain with a much smaller foot. We have measured the feet and

there is a great difference it even did shock Dr. Van Bosse and I was

wondering if you know of anything that could help the growth of the clubfoot.

The non-clubfoot is a 17 and a half and the clubfoot is a 15 in shoe sizes (

infant) . Thanks, Kathy

[Guest guest]

Hi Pam,

Like everyone else, I am trying to understand as much as I can about

clubfoot in general and our own child's specific feet. As we have

all experienced, finding information is not very easy but at least

the

internet is making more of what may exist available so that parents

can be aware of whatever alternatives there are. The information

also

needs to be available to parents who do not have access to the

internet.

One of the interesting things about all of this is that at least Dr.

Ponseti and the U of Iowa have put together a very informative

and positive web site. Also Dr. Ponseti's book is really relatively

easy to read and is full of information and documentation of what to

expect if his treatment method is followed by a doctor and the

parents.

To some degree, it is amazing that there is not corresponding

information from a surgical perspective that is easily available. As

you realize, the abstracted information about the Mayo study and the

other items at the POSNA site are just a few sources and as abstracts

are very short on detail. It would be great if somewhere that had

done primarily surgical treatment would gather the data and report on

long term outcomes and ways to minimize the potential risks or deal

with any possible problems.

It is possible that there is some information out there somewhere

that

we all just haven't found yet although I am pretty sure from Dr.

Ponseti and other surgically oriented doctors that there are no long

term studies beyond about 16yrs of age. Dr. Ponseti has been

encouraging others to do long term surgical method studies but so far

they have not been done. If the studies existed, then there could

also be an emphasis on what types of things can be done to try to

minimize the potential risks as well as overcome any potential

problems. To some degree, that is kind of what Dr. Lehman's two

chapters that he wrote in 1991 and 1992 were about, (How to minimize

the potential risks and complications) although from a perspective of

reviewing short term outcomes.

I am glad that things are going well for .

and (3-17-99)

[Guest guest]

Hi ,

I totally agree that there is not enough info readily available out

there, especially offline regarding non-surgical clubfeet treatment,

etc. Something needs to be developed, perhaps a brochure for parents,

to give them basic information on clubfeet and the non-surgical

treatments for it. I'm completely clueless as to why the info is so

hard to find on both the Ponseti method and the French Physiotherapy

method in general. The only reason for the difficulty in finding this

info readily available that I can see comes from a discussion I had

with my homeopath on an unrelated issue.

About 10 years ago, when we started to incorporate homeopathy into

our medical care, my homeopath and I started to discuss the medical

field and why alternative medical care was not incorporated into

everyday medical treatment now. A hundred and fifty years ago, they

were. What ended that were political manuevers within the medical

establishment.

The same thing applies here, I believe. Both the Ponseti method and

the French Physiotherapy method, though far more costly in time and

effort, are far less costly in terms of the medical expense. To

promote them would be " cutting the throat " , to some extent, of the

medical extablishment. They can't make as much money off of us this

way, so it will not be promoted as much. It's simply a matter of

dollars and cents. This is why the research you and others are doing

and getting the word out on both methods is so vital.

I'm going to be bold on this one and suggest that perhaps, with all

of your research behind you, that you and others consider forming an

organization and writing and distributing a brochure on the subject

of non-surgical treatments for clubfeet, as well as information on

dealing with foot pain non-surgically for those clubfoot patients who

ultimately had to have surgery. I would be happy to help in the

research and writing department towards such a venture. I will be

continuing my research, shifting it more, for now, towards non-

surgical methods of dealing with foot pain and will post any findings

here, as well as any other research I can find in general...

Blessings,

Pam

> Hi Pam,

>

> Like everyone else, I am trying to understand as much as I can

about

> clubfoot in general and our own child's specific feet. As we have

> all experienced, finding information is not very easy but at least

> the

> internet is making more of what may exist available so that parents

> can be aware of whatever alternatives there are. The information

> also

> needs to be available to parents who do not have access to the

> internet.

>

> One of the interesting things about all of this is that at least

Dr.

> Ponseti and the U of Iowa have put together a very informative

> and positive web site. Also Dr. Ponseti's book is really

relatively

> easy to read and is full of information and documentation of what

to

> expect if his treatment method is followed by a doctor and the

> parents.

>

> To some degree, it is amazing that there is not corresponding

> information from a surgical perspective that is easily available.

As

> you realize, the abstracted information about the Mayo study and

the

> other items at the POSNA site are just a few sources and as

abstracts

> are very short on detail. It would be great if somewhere that had

> done primarily surgical treatment would gather the data and report

on

> long term outcomes and ways to minimize the potential risks or deal

> with any possible problems.

>

> It is possible that there is some information out there somewhere

> that

> we all just haven't found yet although I am pretty sure from Dr.

> Ponseti and other surgically oriented doctors that there are no

long

> term studies beyond about 16yrs of age. Dr. Ponseti has been

> encouraging others to do long term surgical method studies but so

far

> they have not been done. If the studies existed, then there could

> also be an emphasis on what types of things can be done to try to

> minimize the potential risks as well as overcome any potential

> problems. To some degree, that is kind of what Dr. Lehman's two

> chapters that he wrote in 1991 and 1992 were about, (How to

minimize

> the potential risks and complications) although from a perspective

of

> reviewing short term outcomes.

>

> I am glad that things are going well for .

>

> and (3-17-99)

[Guest guest]

Thanks for the information. I am hoping that Zach will adjust to the

DBB fast. If you can tell me how to get to back notes I will look up on

blisters with older children adjusting to the DBB. Any suggestions that

would be of help please forward them to us.

Take Care, Kathy

[Guest guest]

Pam wrote:

> I'm going to be bold on this one and suggest that perhaps, with all

> of your research behind you, that you and others consider forming an

> organization and writing and distributing a brochure on the subject

> of non-surgical treatments for clubfeet, as well as information on

> dealing with foot pain non-surgically for those clubfoot patients who

> ultimately had to have surgery.

Well, that kind of is the intention of clubfoot.net :-)

It's not a brochure, but the purpose of it is to get the information

out.

A lot of the information which has appeared on this and the clubfoot

list have made it to the clubfoot.net website. There's plenty of

work left to do.

Masoner

[Guest guest]

kwitkos862@... wrote:

> Do you have a copy of the Ponseti book? How much was it?

$125 from amazon.com or bn.com. Lori S. found a place that sells

it for a few dollars less, but I can't remember where -- a used

college text online store IIRC.

A few on this list own the book and have lent their copies out

in the past.

Masoner

[Guest guest]

Egbert wrote:

> In addition, Dr. Ponseti mentions in his information that a number of

> patients he has seen that were originally treated surgically at other

> hospitals have indicated to him that their clubfoot pain did not

> begin to occur until the 2nd or 3rd decade of life.

Right, I should have mentioned that. I've received a few private

emails from clubfoot.net from adults, all of whom wrote that they began

having pain in their twenties. It seems that on the clubfoot list there

have been several adults recently who also wrote of having pain

begining in their 20s and 30s.

Masoner

[Guest guest]

Pam wrote:

> Both the Ponseti method and

> the French Physiotherapy method, though far more costly in time and

> effort, are far less costly in terms of the medical expense. To

> promote them would be " cutting the throat " , to some extent, of the

> medical extablishment. They can't make as much money off of us this

> way, so it will not be promoted as much. It's simply a matter of

> dollars and cents.

Dr. Herzenberg wrote something similar at his review of Ponseti's book

on Amazon.com. http://www.clubfoot.net/ for the link.

(I don't have a web browser handy, otherwise I'd post the direct

link).

Masoner

[Guest guest]

I will second that about Dr. Ponseti's book. I would like to get more

literature to have available on the Ponseti and French Physiotherapy

methods. My Family Practice man is using Ralph and I as resource

people for families in his practice as they come along if they are in

need of info on clubfeet treatment in our area so he can recommend

non-surgical treatment. Neat, huh? :-)

Blessings,

Pam

> Do you have a copy of the Ponseti book? How much was it? I would

like to

> get one in the near future; or do you know if he is in the process

of writing

> a new book. I plan on going back to visit the doctor we had from

Rhode

> Island Hospital to show off Zach's foot and try to convince him to

learn more

> for all of the other children born with clubfoot. I think after

seeing the

> corrections and not having major surgery done it might make some

doctors

> think more about the Ponseti Method of treatment. I believe Dr.

Ponseti said

> in an e-mail that he was going to be training some doctor in our

area by the

> end of the year. That is good news. Take Care, Kathy

[Guest guest]

That's wonderful, , but I think there is also a need for

brochures that can be distributed to those not savvy on the net and

also to doctors offices, etc. We need to get the word out. I know in

our area, what we did with was unheard of. Personally, I would

like to see more people educated in the options available, and not

everyone will have the piece of mind we all did to research online or

the resources to do so...Just a thought...Regards to all...

Blessings,

Pam

>

> > I'm going to be bold on this one and suggest that perhaps, with

all

> > of your research behind you, that you and others consider forming

an

> > organization and writing and distributing a brochure on the

subject

> > of non-surgical treatments for clubfeet, as well as information

on

> > dealing with foot pain non-surgically for those clubfoot patients

who

> > ultimately had to have surgery.

>

> Well, that kind of is the intention of clubfoot.net :-)

>

> It's not a brochure, but the purpose of it is to get the information

> out.

>

> A lot of the information which has appeared on this and the clubfoot

> list have made it to the clubfoot.net website. There's plenty of

> work left to do.

>

> Masoner

[Guest guest]

As far as I know Dr. Feldman at NYU has written to all the area pediatric

doctors informing them of the Ponseti Method being practiced now instead of

the major operation that had been practiced in the past. Our pediatrican in

Mass. will give our phone number to new parents of clubfoot infants so that

we can talk to them about thier options of treatments. If everyone passes

information within thier pediatric offices about treatment options available

then more children will not need major operations. in the near future. Not

all parents are willing to put the time in to do the French Theropy or even

travel distances to seek a trained doctor in the Ponseti Method. That is one

problem why so many children have the major operation. Take Care, Kathy

[Guest guest]

Pam,

It is a good idea, but I think that because clubfoot is really a rather

rare occurance, brochures would sit for years in folders and then would

be lost by the time the need for one occured. The family physician we

use hasn't seen a case of clubfoot since he has practiced in this area,

over ten years. And actually, he hadn't seen a case since he did a

rotation at a children's hospital during his training.

I think what would help is publications in major magazines, or news

media, so that someone researching using means other than the internet

might have a better chance to come across the information. And most of

all I think physicians need to keep working to pass the word to other

physicians.

Donna

Pam wrote:

>

> That's wonderful, , but I think there is also a need for

> brochures that can be distributed to those not savvy on the net and

> also to doctors offices, etc. We need to get the word out. I know in

> our area, what we did with was unheard of. Personally, I would

> like to see more people educated in the options available, and not

> everyone will have the piece of mind we all did to research online or

> the resources to do so...Just a thought...Regards to all...

>

> Blessings,

> Pam

>

>

> >

> > > I'm going to be bold on this one and suggest that perhaps, with

> all

> > > of your research behind you, that you and others consider forming

> an

> > > organization and writing and distributing a brochure on the

> subject

> > > of non-surgical treatments for clubfeet, as well as information

> on

> > > dealing with foot pain non-surgically for those clubfoot patients

> who

> > > ultimately had to have surgery.

> >

> > Well, that kind of is the intention of clubfoot.net :-)

> >

> > It's not a brochure, but the purpose of it is to get the information

> > out.

> >

> > A lot of the information which has appeared on this and the clubfoot

> > list have made it to the clubfoot.net website. There's plenty of

> > work left to do.

> >

> > Masoner

>

> ------------------------------------------------------------------------

> Best friends, most artistic, class clown Find 'em here:

> http://click./1/5533/4/_/675489/_/963202620/

> ------------------------------------------------------------------------

>

>

[Guest guest]

I'm considering that as well, Donna. My pediatric chiropractor and I

are jointly considering doing the articles, her in the chiropractic

journals and Ralph and I in the parenting magazines. I think we could

well represent the French Physiotherapy method and make strong

references to the Ponseti method. Would love a co-laborer who has

used the Ponseti method to better tell the story from that end.

Any volunteers?? PLMK (??)

Blessings,

Pam

> > >

> > > > I'm going to be bold on this one and suggest that perhaps,

with

> > all

> > > > of your research behind you, that you and others consider

forming

> > an

> > > > organization and writing and distributing a brochure on the

> > subject

> > > > of non-surgical treatments for clubfeet, as well as

information

> > on

> > > > dealing with foot pain non-surgically for those clubfoot

patients

> > who

> > > > ultimately had to have surgery.

> > >

> > > Well, that kind of is the intention of clubfoot.net :-)

> > >

> > > It's not a brochure, but the purpose of it is to get the

information

> > > out.

> > >

> > > A lot of the information which has appeared on this and the

clubfoot

> > > list have made it to the clubfoot.net website. There's plenty

of

> > > work left to do.

> > >

> > > Masoner

> >

> > ------------------------------------------------------------------

------

> > Best friends, most artistic, class clown Find 'em here:

> > http://click./1/5533/4/_/675489/_/963202620/

> > ------------------------------------------------------------------

------

> >

> >

[Guest guest]

Kathy,

That's wonderful news!!!!! Give us all a full update when you get a

chance.

kwitkos862@... wrote:

> Pam,

> Zach's foot was rated as a normal functioning foot. Great news ! I

> did not

> have time to call last night due to arriving home much later than

> expected

> but will try to call tonight. Kathy

> -----------------------------------------------------------------------

>

> -----------------------------------------------------------------------

>

[Guest guest]

(((Kathy))),

That's terrific!! Praise God!! Now keep in prayer with me for the

same type of good news for our little guy...

Blessings,

Pam

> Pam,

> Zach's foot was rated as a normal functioning foot. Great news !

I did not

> have time to call last night due to arriving home much later than

expected

> but will try to call tonight. Kathy

[Guest guest]

Up Date on Zach; we went to see Dr. Van Bosse on Tuesday at New York Hospital

for Bone and Joint Diseases, he has been in a cast for three weeks following

his tenotomy. The foot was graded as a normal functioning foot and it looks

GREAT!! The heal of course has a mark and the leg does look alittle bit

swollen but that must be do to the casts. The doctor says he is doing great

and expects he will keep doing so with the use of the DBB for 24 hours a day

for three months. We are going back to the hospital on August 8th for a

followup appointment to see if his foot is still doing the same. This is

Amazing since for five months another orthopedic doctor did not get any

correction to occur in Zach's right clubfoot. I am so happy that we chose

this type of method with castings and manipulations. I also thank all of

these wonderful people on this board for encouragement and thier information.

I will keep you updated. We are having some difficulty with getting use to

the shoes but will keep you all updated. Take Care, Kathy

[Guest guest]

Kathy,

So glad for your good news. Hope to have good news for you come next

Thursday. Isn't it wonderful to see feet instead of casts again? Kiss

those wonderful little feet for me...

Blessings,

Pam

> Up Date on Zach; we went to see Dr. Van Bosse on Tuesday at New

York Hospital

> for Bone and Joint Diseases, he has been in a cast for three weeks

following

> his tenotomy. The foot was graded as a normal functioning foot

and it looks

> GREAT!! The heal of course has a mark and the leg does look

alittle bit

> swollen but that must be do to the casts. The doctor says he is

doing great

> and expects he will keep doing so with the use of the DBB for 24

hours a day

> for three months. We are going back to the hospital on August 8th

for a

> followup appointment to see if his foot is still doing the same.

This is

> Amazing since for five months another orthopedic doctor did not get

any

> correction to occur in Zach's right clubfoot. I am so happy that

we chose

> this type of method with castings and manipulations. I also thank

all of

> these wonderful people on this board for encouragement and thier

information.

> I will keep you updated. We are having some difficulty with

getting use to

> the shoes but will keep you all updated. Take Care, Kathy

[Guest guest]

Pam,

I have been very busy lately so haven't got time to myself. Zach is sitting

on me as I am writing one handed. He would like to type too. I hope you

have great results also. I would kiss his feet now but we are ajusting to

the DBB. Our feet get a break for tubby time. Good night. Kathy

[Guest guest]

Pam,

Good Luck Thursday!! Kathy