Re: New to the list--20 week ultrasound showed bilateral clubfeet

[Guest guest]

Hi Gretchen,

Just wanted to welcome you to the group and say congrats on your

pregnancy. Sounds like you've done a lot of research which is

wonderful! Dr. van Bosse is a name I've heard, but I'm just not

familiar enough with him to give you an opinion. I'm sure that

someone on the list will see your message and be able to comment. I

think the key thing is to know going in to things what to expect and

what to look for - you can find a list of questions to ask a

prospective doctor at this website:

http://members.tripod.com/ponseti_links-ivil/id13.html

as well as lots of other information about the Ponseti method.

There's also the Global-Help booklet which details the method here:

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

Hope this helps!

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

>

> Hi everyone,

>

> My name is Gretchen and I am 20 weeks pregnant with my second child.

> We learned at the ultrasound last week that the baby has bilateral

> clubfeet. This was not a huge surprise since I was born with

> idiopathic club feet myself, but it was upsetting nonetheless. My

> own experience with clubfeet is what led me to a career as a

> biomechanical engineering in the orthopedics industry. My work is in

> spine applications, however my company also makes external fixation

> devices for deformity correction and trauma applications.

>

> Between my contacts here at work and the research I have done both

> over the years out of idle curiousity and more recently with this

> baby, it seems that Dr. Feldman at the Hospital for Joint Disease

> would be the person to go to, since I am in northern New Jersey.

> However, it seems that Dr. Feldman does not take our insurance (Aetna

> primary and Cigna secondary). Dr. van Bosse who is also associated

> with HJD does take our insurance and is certified in Dr. Ponseti's

> method. Does anyone know anything about him. We work with Dr.

> Feldman a lot both in spine and limb applications, but no one here

> seems to know much about Dr. van Bosse.

>

> Many thanks in advance.

>

> Gretchen

>

[Guest guest]

,

Thanks for the response and the great links. Excellent information.

Treatment of clubfeet has changed a lot since my were corrected all

those years ago.

Gretchen

>

> Hi Gretchen,

> Just wanted to welcome you to the group and say congrats on your

> pregnancy. Sounds like you've done a lot of research which is

> wonderful! Dr. van Bosse is a name I've heard, but I'm just not

> familiar enough with him to give you an opinion. I'm sure that

> someone on the list will see your message and be able to comment. I

> think the key thing is to know going in to things what to expect and

> what to look for - you can find a list of questions to ask a

> prospective doctor at this website:

> http://members.tripod.com/ponseti_links-ivil/id13.html

> as well as lots of other information about the Ponseti method.

> There's also the Global-Help booklet which details the method here:

> http://www.global-help.org/publications/cf.2.pdf

>

> Hope this helps!

>

> Mom to Jenna (4/7/01) & Sammy (9/25/04, RCF, Dobbs' brace, 12-

14hrs/day)

[Guest guest]

Gretchen.

I don't know where in Jersey you live, but I know several from this list who

live in Jersey go to Dr. Herzenberg in Baltimore.

If you can't find info on Van Bosse, Dr. Herzenberg is another option for you.

HTH.

gretchendshah wrote:

,

Thanks for the response and the great links. Excellent information.

Treatment of clubfeet has changed a lot since my were corrected all

those years ago.

Gretchen

>

> Hi Gretchen,

> Just wanted to welcome you to the group and say congrats on your

> pregnancy. Sounds like you've done a lot of research which is

> wonderful! Dr. van Bosse is a name I've heard, but I'm just not

> familiar enough with him to give you an opinion. I'm sure that

> someone on the list will see your message and be able to comment. I

> think the key thing is to know going in to things what to expect and

> what to look for - you can find a list of questions to ask a

> prospective doctor at this website:

> http://members.tripod.com/ponseti_links-ivil/id13.html

> as well as lots of other information about the Ponseti method.

> There's also the Global-Help booklet which details the method here:

> http://www.global-help.org/publications/cf.2.pdf

>

> Hope this helps!

>

> Mom to Jenna (4/7/01) & Sammy (9/25/04, RCF, Dobbs' brace, 12-

14hrs/day)

[Guest guest]

I'm in Northern New Jersey, about 30 miles west of NYC, so Baltimore

would be a bit of a hike for me (3 hours minimum one way) every week,

especially since I also have a 3.5 year old to take care of. Thanks

for the suggestion, though.

Gretchen

>

> Gretchen.

>

> I don't know where in Jersey you live, but I know several from this

list who live in Jersey go to Dr. Herzenberg in Baltimore.

> If you can't find info on Van Bosse, Dr. Herzenberg is another

option for you.

>

> HTH.

>

>

[Guest guest]

dear Gretchen,

i'm from naples in italy.

I have a 4 yaers old to take care of and so initially I chose a dr

in naples. but it wasn't a good choice and so when lorenzo had to do

tenothomy I changed dr and chose a dr in rome (3 hours from naples).

the distance is important but a good doctor is more important

ciao

anna

> >

> > Gretchen.

> >

> > I don't know where in Jersey you live, but I know several from

this

> list who live in Jersey go to Dr. Herzenberg in Baltimore.

> > If you can't find info on Van Bosse, Dr. Herzenberg is another

> option for you.

> >

> > HTH.

> >

> >

>

[Guest guest]

Hi Gretchen,

We live in South Jersey and my son is treated by Dr. Ponseti and Dr.

Morcunde currently, but I remember Dr. Ponseti telling me that Dr.

Lehmen in New York was a really great clubfoot doctor!

Michele

Collin's foot story at

http://www.geocities.com/chele323232

[Guest guest]

Gretchen,

There have been many families who have used the NYC doctors over the

years that I've been patrolling the boards. I remember some

positive reports about Dr. Van Bosse, but I can't for the life of me

remember who used him in particular. There is a patient/physician

referral in the Database section, so you might browse through it to

see if anyone took the time to put in their names/comments for any

of the NYC docs. I haven't heard any complaints about the NYC

doctors who are listed on Dr. P's qualified physicians list, so I

would venture to guess that you really can't go wrong. I do know

that Dr. Lehman is one of the more well-known doctors and well-

experienced. If you have any particular questions or concerns after

you speak with them about their protocol, we're always happy to

weigh in here!

There are some links to some of their profiles/websites on the

ponseti_links site under the " other US physicians " tab.

I hope this helps some! Sorry I can't remember any particular

referrals for Dr. Van Bosse, but I do know that I've read good

reports.

Regards,

& (3-16-00, left clubfoot)

http://ponseticlubfoot.freeservers.com/

> >

> > Gretchen.

> >

> > I don't know where in Jersey you live, but I know several from

this

> list who live in Jersey go to Dr. Herzenberg in Baltimore.

> > If you can't find info on Van Bosse, Dr. Herzenberg is another

> option for you.

> >

> > HTH.

> >

> >

>

[Guest guest]

Hi Gretchen,

I live in Northern (Bergen County) Jersey too. We go down to Dr. Herzenberg

also because that is where Dr. Ponseti directed us to go. I know that Dr.

Feldman in NYC is supposed to be very good as well.

Mommy to (12/17/98) and

Christian (1/30/04) LCF

_____

From: nosurgery4clubfoot

[mailto:nosurgery4clubfoot ] On Behalf Of gretchendshah

Sent: Tuesday, March 28, 2006 3:22 PM

To: nosurgery4clubfoot

Subject: Re: New to the list--20 week ultrasound showed

bilateral clubfeet

I'm in Northern New Jersey, about 30 miles west of NYC, so Baltimore

would be a bit of a hike for me (3 hours minimum one way) every week,

especially since I also have a 3.5 year old to take care of. Thanks

for the suggestion, though.

Gretchen

>

> Gretchen.

>

> I don't know where in Jersey you live, but I know several from this

list who live in Jersey go to Dr. Herzenberg in Baltimore.

> If you can't find info on Van Bosse, Dr. Herzenberg is another

option for you.

>

> HTH.

>

>

[Guest guest]

Oh, I agree that a good doctor is most important, but right now I have

no evidence to suggest that our closest doctor is no good. If

everyone said he was terrible, that would be a different story.

Gretchen

>

> dear Gretchen,

> i'm from naples in italy.

> I have a 4 yaers old to take care of and so initially I chose a dr

> in naples. but it wasn't a good choice and so when lorenzo had to do

> tenothomy I changed dr and chose a dr in rome (3 hours from naples).

>

> the distance is important but a good doctor is more important

>

> ciao

>

> anna

[Guest guest]

Thanks, . That's very helpful. I believe Dr. Lehman and Dr. van

Bosse are part of the same practice. For some reason I have the

impression that Dr. Lehman is more or less retired, but I forget why I

have that impression.

Gretchen

>

> Gretchen,

> There have been many families who have used the NYC doctors over the

> years that I've been patrolling the boards. I remember some

> positive reports about Dr. Van Bosse, but I can't for the life of me

> remember who used him in particular. There is a patient/physician

> referral in the Database section, so you might browse through it to

> see if anyone took the time to put in their names/comments for any

> of the NYC docs. I haven't heard any complaints about the NYC

> doctors who are listed on Dr. P's qualified physicians list, so I

> would venture to guess that you really can't go wrong. I do know

> that Dr. Lehman is one of the more well-known doctors and well-

> experienced. If you have any particular questions or concerns after

> you speak with them about their protocol, we're always happy to

> weigh in here!

> There are some links to some of their profiles/websites on the

> ponseti_links site under the " other US physicians " tab.

> I hope this helps some! Sorry I can't remember any particular

> referrals for Dr. Van Bosse, but I do know that I've read good

> reports.

> Regards,

> & (3-16-00, left clubfoot)

> http://ponseticlubfoot.freeservers.com/

[Guest guest]

Gretchen,

I forgot to mention in my reply that I'm an adult with clubfoot too.

I had 4 surgeries, so I'm really glad we have this method of non-

surgical correction available now.

> >

> > Hi Gretchen,

> > Just wanted to welcome you to the group and say congrats on your

> > pregnancy. Sounds like you've done a lot of research which is

> > wonderful! Dr. van Bosse is a name I've heard, but I'm just not

> > familiar enough with him to give you an opinion. I'm sure that

> > someone on the list will see your message and be able to

comment. I

> > think the key thing is to know going in to things what to expect

and

> > what to look for - you can find a list of questions to ask a

> > prospective doctor at this website:

> > http://members.tripod.com/ponseti_links-ivil/id13.html

> > as well as lots of other information about the Ponseti method.

> > There's also the Global-Help booklet which details the method

here:

> > http://www.global-help.org/publications/cf.2.pdf

> >

> > Hope this helps!

> >

> > Mom to Jenna (4/7/01) & Sammy (9/25/04, RCF, Dobbs' brace, 12-

> 14hrs/day)

>

[Guest guest]

Hi Gretchen

I'm a little late coming in on this discussion, but I think I am in

a very similar boat as you. My son was born on March 11th with

bilateral clubfeet. He has seen a doctor near where we live who is

from the HJD and actually runs all of the special clinics at the

Children's Center down there, but she is not a Ponseti certified

doctor. She recommended that we take (our son) down to Dr.

Lehman at the Clubfoot Clinic.

Dr Lehman does not take our insurance plan and his secretary

explained to me that we would be responsible for the 20% that

insurance will not pay using an out of network doctor. Those

numbers got very scary, very quickly.

I did a bit more research and found that Dr. van Bosse does accept

our insurance and the thought of a $15 copay each visit is something

I am much more comfortable with. Yesterday, I set up an appointment

with him. I know that Dr. van Bosse is associated with the Clubfoot

Clinic (I'm under the impression that he helps Dr. Lehman run it),

however our initial visit will be in his private office on 18th St.

Apparently he is only there on Wednesdays. He's got another office

in Great Neck, but Manhattan is much closer for us than Long Island.

If you would like, I can let you know what my initial impressions of

Dr. van Bosse are after our visit next week. Like you, I don't

really know anything about him, but I am very hopeful.

Be well and enjoy the rest of your pregnancy!

Anne

[Guest guest]

> > >

> > > Hi Gretchen,

> > > Just wanted to welcome you to the group and say congrats on your

> > > pregnancy. Sounds like you've done a lot of research which is

> > > wonderful! Dr. van Bosse is a name I've heard, but I'm just not

> > > familiar enough with him to give you an opinion. I'm sure that

> > > someone on the list will see your message and be able to

> comment. I

> > > think the key thing is to know going in to things what to

expect

> and

> > > what to look for - you can find a list of questions to ask a

> > > prospective doctor at this website:

> > > http://members.tripod.com/ponseti_links-ivil/id13.html

> > > as well as lots of other information about the Ponseti method.

> > > There's also the Global-Help booklet which details the method

> here:

> > > http://www.global-help.org/publications/cf.2.pdf

> > >

> > > Hope this helps!

> > >

> > > Mom to Jenna (4/7/01) & Sammy (9/25/04, RCF, Dobbs' brace, 12-

> > 14hrs/day)

> >

>

[Guest guest]

Gretchen,

I don't have a lot of details myself, but here's what I've pieced

together from my mom and my knowledge now. I had both long leg casts

and below the knee casts. I do know I had the achilles tendon

lengthening (same type of long incision up the back of my heel and

part way up my calf), a posteriomedial release as well as some other

tendon transfers on the top of my foot, including an ATTT (anterior

tibial tendon transfer). I also wore a DBB for some time and the knee

high to ankle brace (like Forrest's I wore mine during the day

around age 4-6). I have a high arch and my metatarsals are at a

higher angle than most due to the cavus not being corrected properly.

I never had any bone surgeries but there are several adults I know

through these groups who did.

Hope this helps, let me know if you have any other questions. I don't

mind a bit.

> > > >

> > > > Hi Gretchen,

> > > > Just wanted to welcome you to the group and say congrats on your

> > > > pregnancy. Sounds like you've done a lot of research which is

> > > > wonderful! Dr. van Bosse is a name I've heard, but I'm just not

> > > > familiar enough with him to give you an opinion. I'm sure that

> > > > someone on the list will see your message and be able to

> > comment. I

> > > > think the key thing is to know going in to things what to

> expect

> > and

> > > > what to look for - you can find a list of questions to ask a

> > > > prospective doctor at this website:

> > > > http://members.tripod.com/ponseti_links-ivil/id13.html

> > > > as well as lots of other information about the Ponseti method.

> > > > There's also the Global-Help booklet which details the method

> > here:

> > > > http://www.global-help.org/publications/cf.2.pdf

> > > >

> > > > Hope this helps!

> > > >

> > > > Mom to Jenna (4/7/01) & Sammy (9/25/04, RCF, Dobbs' brace, 12-

> > > 14hrs/day)

> > >

> >

>

[Guest guest]

Thanks for responding, Anne. I would love to hear your impressions

of Dr. van Bosse after you meet with him. I haven't investigated

what out-of-network charges would be. Quite frankly, I'm hoping

that's not necessary. Would you mind sharing a ballpark number for

what you were told the 20% would be? If you'd prefer not to, I

completely understand.

Thanks again!

Gretchen

>

> Hi Gretchen

>

> I'm a little late coming in on this discussion, but I think I am in

> a very similar boat as you. My son was born on March 11th with

> bilateral clubfeet. He has seen a doctor near where we live who is

> from the HJD and actually runs all of the special clinics at the

> Children's Center down there, but she is not a Ponseti certified

> doctor. She recommended that we take (our son) down to Dr.

> Lehman at the Clubfoot Clinic.

>

> Dr Lehman does not take our insurance plan and his secretary

> explained to me that we would be responsible for the 20% that

> insurance will not pay using an out of network doctor. Those

> numbers got very scary, very quickly.

>

> I did a bit more research and found that Dr. van Bosse does accept

> our insurance and the thought of a $15 copay each visit is

something

> I am much more comfortable with. Yesterday, I set up an

appointment

> with him. I know that Dr. van Bosse is associated with the

Clubfoot

> Clinic (I'm under the impression that he helps Dr. Lehman run it),

> however our initial visit will be in his private office on 18th

St.

> Apparently he is only there on Wednesdays. He's got another office

> in Great Neck, but Manhattan is much closer for us than Long Island.

>

> If you would like, I can let you know what my initial impressions

of

> Dr. van Bosse are after our visit next week. Like you, I don't

> really know anything about him, but I am very hopeful.

>

> Be well and enjoy the rest of your pregnancy!

> Anne

>

[Guest guest]

Thanks for responding . After showing my parents the links to

the Ponseti sites, my mom described the treatment as " miraculous. "

So much so, that she said that after see that she feels like she took

me to some kind of butcher. I reassured her that, as far as all

the research I've done shows, what I had done was the standard of

care at the time. You can't do better than that.

I think I have the same issue with regard to my metatarsals. It

makes buying most slip on shoes a real pain, but I'm grateful that

while my feet are too different lengths it's not enough to require

two different-sized shoes. I have quite a shoe fetish. Oh, the

irony there...

Gretchen

>

> Gretchen,

> I don't have a lot of details myself, but here's what I've pieced

> together from my mom and my knowledge now. I had both long leg

casts

> and below the knee casts. I do know I had the achilles tendon

> lengthening (same type of long incision up the back of my heel and

> part way up my calf), a posteriomedial release as well as some other

> tendon transfers on the top of my foot, including an ATTT (anterior

> tibial tendon transfer). I also wore a DBB for some time and the

knee

> high to ankle brace (like Forrest's I wore mine during the day

> around age 4-6). I have a high arch and my metatarsals are at a

> higher angle than most due to the cavus not being corrected

properly.

> I never had any bone surgeries but there are several adults I know

> through these groups who did.

> Hope this helps, let me know if you have any other questions. I

don't

> mind a bit.

>

>

[Guest guest]

Gretchen,

While the tide is slowly turning (most of the momentum has been in

the last 3-4 years really), unfortunately, the " standard of care " is

still the Kite method which is typically 50% or less successful in

avoiding the PMR or other reconstructive surgeries. That's why so

many of us are here hanging out on the support groups, even though

clubfoot really isn't an issue in our daily lives. While we don't

need " support " per se, we have a desire to help other families get

the " gold standard " of the Ponseti method in an unaltered (tweaked)

form. It's been a real challenge- especially since so many doctors

will tell a parent that they use the Ponseti method, when, in fact,

they are deviating and getting less than stellar results. For some

doctors, their bogus definition of the " Ponseti method " has actually

just been using long leg casts instead of below the knee casts.

It's a frustrating thing!

You can tell your mom that there are many babies born today who will

still be treated with the same methods and procedures that you went

through, but soon, hopefully, this situation will be rare and not

commonplace!

Your baby is lucky to have a mom who is researching treatment

options and it's great that you live near physicians who are

dedicated to using the unaltered P method.

There's a nice support group for adults with clubfoot on Yahoo

called " thefeetclub " , http://groups.yahoo.com/group/thefeetclub

Keep us posted!

('s mom)

[Guest guest]

> You can tell your mom that there are many babies born today who will

> still be treated with the same methods and procedures that you went

> through, but soon, hopefully, this situation will be rare and not

> commonplace!

Oh, believe me, I have! I am horrified to think that she thinks she

did something wrong, or something less than the best she could have

done. Aside from the scars, no one looking at me would ever know I'd

had clubfeet. Whatever else I can say about the treatment, it did

eventually get the job done. Of course, I'll still have the surgical

side effects to look forward to (arthitis and the like) and I am

grateful that this baby will likely avoid that.

> Your baby is lucky to have a mom who is researching treatment

> options and it's great that you live near physicians who are

> dedicated to using the unaltered P method.

Aww, thanks.

> There's a nice support group for adults with clubfoot on Yahoo

> called " thefeetclub " , http://groups.yahoo.com/group/thefeetclub

I'll have to check that out. It's funny because I think of clubfeet as

something I used to have. It's weird to me to see it in the present

tense in reference to myself. But that's just semantics, I suppose.

Anyway, thanks for the link.

Gretchen