Re: Adult Male Living with Club Feet

[Guest guest]

Good to hear from you .

My son was born with unilateral club foot and has been treated using

the Ponsetti method. Things are progressing well, however, right

from the outset when Ben was born our focus has always been on being

strong for Ben. We have always hoped that because of his

difficulties Ben will be a stronger individual, he won't take things

for granted and will always try to look after himself physically.

You obviously have this drive and strength and it is pleasing to

hear your story.

Best wishes

Tom, Corinne & Ben

> Greetings to all. I would just like to extend my appreciation to

you

> for creating this group. It is a very important message that you

are

> sending to people. My name is Gainey. I am a 27 year old

male

> who was born with Bi-Lateral Club Feet. I was casted early on, but

> surgery and braces were the general treatments that I went

through. I

> have had around 10 surgeries to my feet, ankles, and tib/fib

region

> all of which has caused me to be in my opinion worse off than I

would

> have been if none was done at all. I have very little circulation

in

> my feet, very little ankle movement due to fused bones which has

> caused my calf muscles never to really develop in turn causing

> fractures just from daily life. I also suffer from scarred

achilles

> tendons due to my last surgery where Dr. Gruber of Stony

Brook

> University Hospital attempted to do a wedge surgery that took a

pie

> shaped piece of the tip/fib region out and brought the feet to the

> outside so that I wouldn't walk on the sides of my feet any

longer.

> Due to the scarred achilles tendons, I have a very difficult time

> supporting myself without shoes on. I always have to have a

cushion

> below my feet. I also am unable to stand in one place. I tend to

rock

> a bit. Prior to that last surgery(I was 17 years old), I lived a

> relatively normal youth(Football, Wrestling, Lacrosse,Street

Hockey),

> with far more managable pain. I made an effort to see Dr. Wallace

> Lehman after the surgery with Gruber, but at the time(almost 10

years

> ago) he did not feel that there was much that could be done. At

this

> point, I can not really run, and have a constant limp in my

walking.

> My activities for excercise are very limited(light walking, Bike

> Riding which I can do because my body has made up for weak lower

> legs, by giving me very strong upper legs)I am able to play Golf

but

> cant make it through 18 holes walking. The one thing that my

> experiences have left me with is a strong drive to overcome. I

> recommend to all parents on this board, that you nurture that

quality

> in your kids. Let them play sports, run around,do everything that

the

> other kids are doing. This will only develop them into stronger

> individuals. If anyone would like to ask me any questions, feel

free

> to contact me by email. Thanks again for this board and lets hope

> that The Ponsetti Method continues to show the sucess that it has

had

> for many years to come.

>

> Gainey

> irishboy7624@h...

[Guest guest]

Hi,

First of all, a happy 2004 to everyone (we just got back from our summer

holidays).

It was nice to read these emails. One thing I will always remember when

was born, was that the nurses in the maternity ward all told us they had noticed

babies born with some kind of physical difficulty are blessed with wonderful

natures.

I don't know if they said that to make us feel better, but I think they were

right! In my experience, all the clubfoot babies I have met so far are a little

more special - and I've met quite a few now, because I go to visit Dr Khan at

the new Ponseti clubfoot clinic that opened in our city last October.

In our personal experience, is a wonderfully natured baby boy. He takes

things in his stride, is very adaptable and patient and is almost always in a

good mood. He's also a very determined and strong baby. This has helped us as

parents dealing with casts, dbb, etc.

If we had to do it all over again - with the same results - we wouldn't

hesitate, it has been a very positive experience for us.

Steve, and

24 Jan 2003, bilateral cf

Re: Adult Male Living with Club Feet

Good to hear from you .

My son was born with unilateral club foot and has been treated using

the Ponsetti method. Things are progressing well, however, right

from the outset when Ben was born our focus has always been on being

strong for Ben. We have always hoped that because of his

difficulties Ben will be a stronger individual, he won't take things

for granted and will always try to look after himself physically.

You obviously have this drive and strength and it is pleasing to

hear your story.

Best wishes

Tom, Corinne & Ben

[Guest guest]

, thank you so much for sharing your story. No one could understand why

we would go all the way from Ohio to Iowa for clubfeet treatment when we

could just have surgery here and be finished with it. I hear a lot of people

say

" my child had surgery and is fine. " Your story makes the possible problems

with surgery a reality and reaffirms our decision.

We flew to Iowa once a week for four weeks. Our daughter was four days old

the first time we went. She is 2 1/2 now and is walking and running and doing

great.

Thanks again

Joanne

[Guest guest]

Thanks so much for your post. Wow, 10 surgeries! I'm so sorry to

hear that, however, despite the surgeries sounds like you have led a

full life playing sports and thanks for your advise to continue to

encourage our kids to do everything they want.

Thought I'd tell you a little about my daughter. I drove my

daughter literally half way across the US to see Dr. Ponseti. At first

I thought I was crazy (and everyone else did too). Sometimes I tend to

take things to extreme. I was so concerned about my daughters life and

how her leg would function as she grew, what kind of sports she could

play, if she would be teased, what type of job would she have to have

due to her " disability " (as everyone kept calling it, I cried everytime

I heard that word). Our local doctor was planning to do surgery and I

had this terrible feeling about it. So I packed the car and we headed

to Iowa. We met this wonderful, little 89y/o man, Dr. Ponseti. He had

me sit in a rocking chair holding Katelyn on my lap he took her tiny

foot in his hand and gently massaged it giving a few humm's and ahh's

then he looked up at me with a smiling face and says his first words to

me " Katelyn's foot will be normal " I still cry when I think about the

first time he touched her little foot and she didn't make a sound. Her

other doctor made her cry everytime he manipulated her foot and went

over and over how she would have this " disability " for life and never

lead a normal life but with Dr. Ponseti, the attitude was so positive

and reassuring, for the first time since Katelyn was born I felt I had

made the right decision.

Hearing your story just made me think of this all over again and

thank God that I followed my heart and didn't listen to everyone else

and let her have surgery. She took her first steps a week ago and is

only 11 months old, something else I was told she wouldn't do until very

late.

Thanks again for your story and please continue to post to let us know

how you are doing.

Adult Male Living with Club Feet

Greetings to all. I would just like to extend my appreciation to you

for creating this group. It is a very important message that you are

sending to people. My name is Gainey. I am a 27 year old male

who was born with Bi-Lateral Club Feet. I was casted early on, but

surgery and braces were the general treatments that I went through. I

have had around 10 surgeries to my feet, ankles, and tib/fib region

all of which has caused me to be in my opinion worse off than I would

have been if none was done at all. I have very little circulation in

my feet, very little ankle movement due to fused bones which has

caused my calf muscles never to really develop in turn causing

fractures just from daily life. I also suffer from scarred achilles

tendons due to my last surgery where Dr. Gruber of Stony Brook

University Hospital attempted to do a wedge surgery that took a pie

shaped piece of the tip/fib region out and brought the feet to the

outside so that I wouldn't walk on the sides of my feet any longer.

Due to the scarred achilles tendons, I have a very difficult time

supporting myself without shoes on. I always have to have a cushion

below my feet. I also am unable to stand in one place. I tend to rock

a bit. Prior to that last surgery(I was 17 years old), I lived a

relatively normal youth(Football, Wrestling, Lacrosse,Street Hockey),

with far more managable pain. I made an effort to see Dr. Wallace

Lehman after the surgery with Gruber, but at the time(almost 10 years

ago) he did not feel that there was much that could be done. At this

point, I can not really run, and have a constant limp in my walking.

My activities for excercise are very limited(light walking, Bike

Riding which I can do because my body has made up for weak lower

legs, by giving me very strong upper legs)I am able to play Golf but

cant make it through 18 holes walking. The one thing that my

experiences have left me with is a strong drive to overcome. I

recommend to all parents on this board, that you nurture that quality

in your kids. Let them play sports, run around,do everything that the

other kids are doing. This will only develop them into stronger

individuals. If anyone would like to ask me any questions, feel free

to contact me by email. Thanks again for this board and lets hope

that The Ponsetti Method continues to show the sucess that it has had

for many years to come.

Gainey

irishboy7624@...