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New here [Oct. 28th, 2008|06:11 pm]
Clubfoot Discussion Community
[mood |happyhappy]

I'm Werner form Germany and I'm new to livejournal!

My story:
I was born with a left clubfoot and after casts & braces I got surgery to lengthen my achilles heel tendon. After several new braces and special shoes my foot was still in a slight "clubfoot-position" (high arch, walking on outer side of foot) and so I got a second surgery at age 4. From now on, my foot looks overcorrected (flat arch, collapsing to the inside) and I wore orthotics and got physical therapy for several years.

Since my adult-hood, my left foot is about two sizes than the right and the leg itself is a bit shorter, too. I'm wearing orthotics but haven't got good ones for several years and changed the orthopedist and technician several times!?

But luckily, I have very little pain and besides the crooked position, thin calve and ugly scars on back and on the inside of my foot, it works fine till now :-)

I was struggling to find other adults with clubfoot, so I've created a "adults & teens with clubfoot" group on facebook and all "clubfooters" are welcome, I've also made a link back to this livejournal! I hope both communities become a little bit more active!

If you have any questions, want to chat or have any experiences with orthotics, send me a mail!

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We're so quiet! So...QUESTION TIME. [Apr. 27th, 2008|03:57 am]
Clubfoot Discussion Community

[mood |sleepysleepy]

Hi, guys - sorry this comm is so quiet, but there don't seem to be many of us here on LJ. I wish there were more people aware of our group, because I'm sure we could be helpful to one another.

I'm just posting to check in with those who ARE here to ask a general question or two, for reference. All of our cases are probably very different, so I thought it might be useful to compare some notes!

1) Do you take any medications to control your pain? If so, what?
2) Are there things you find you simply cannot do because of your feet?
3) What solutions work best for you when you're having an especially bad day with your legs?

I'll answer first, since I'm the one being nosy enough to ask. :)

Do you take any medications...?Collapse )

Are there things you find you simply cannot do...?Collapse )

What solutions work best for you...?Collapse )

So what about you guys? Have you had surgery, or did you have something else done? What do you do for a living, and how do you deal? Any magic solutions you've found that are worth sharing?

I look forward to reacquainting myself with all of you. :)
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Working [Mar. 31st, 2008|09:06 am]
Clubfoot Discussion Community

I just found this community this morning. I just started working a part time job and it's killing my feet!! I have to be on my feet for 6-8 hours a day for about 5 days a week. When I get home I just collapse. Yesterday I worked my first 8 hour day and I almost had to crawl out of bed this morning to get ready for work again. Does anyone know of anything that can help with the pain? So, if anyone has any tips that would be fantastic.
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Free shoes to a good home, again [Jan. 12th, 2006|11:53 am]
Clubfoot Discussion Community

I wrote this in my previous post to this community:

I bought some new shoes yesterday, and, since my feet are different sizes, I had to buy two pairs. I think it's such a shame that I always end up throwing out two perfectly good new shoes, but I can never find anyone who wants my unneeded mates. I thought perhaps I could find someone here who takes the same sizes as me on the opposite feet, and if that's you, I'll happily mail out these shoes to you for free. I just don't want to see them get thrown away and go to waste.

Same deal, different shoes. (For someone who claims to hate shoe shopping as much as I do, I certainly seem to buy new ones rather frequently.)

They are women's shoes, white with green stripes on the side, and come with both white and green laces depending on which you want to use. They are all man-made materials/non-leather. The right shoe is a size 7 and the left is a 9.5.

Click for a picture!

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(no subject) [Jan. 7th, 2006|07:45 pm]
Clubfoot Discussion Community

Hey everyone. I know the community hasn't has a post in months, but I figured I'd post anyway. :) (ps - lol after reading this posts it sounds very whiny, I'm just trying to describe my situation but it comes out as a pity post.)

I'm 16 years old (female!) and I was born with.. um.. lol, I don't know the technical term, but club foot on both my feet. They were really bad, and according to my dad, my feet were basically black and looked like a clenched fist. I was born early, as well.

I've had 11 surgeries so far, and I've had hundreds of casts put on my feet over 16 years. I remember one surgery when I was 8 where I had to get a new cast twice a week for 6 months. x.x

My feet are still really bad (I have a limp & I can't walk any 'extra' walking, as in something after school, without risking having to miss a day of school on account of not being able to walk.) and I'm going for my 12 surgery in April. The last time I went to the doctor, we found out that my bones were very mishapen and they were preventing my foot from moving up & down correctly, so they're going to remove a certain degree of bone from my foot in hopes it will help with the limp.

I hope it does, I want to get into theater and I've been having a hard time keeping roles because my limp gets very bad after standing for a while. Plus it would be nice to not get made fun of for my limp. x.x Or have every teacher ask me at least 4 times a year if "everything is okay at home" or if I twisted my ankle. I know they're just concerned, but it kind of sucks when I try to tell them it's just how I walk and they don't really believe me.

I'm kind of.. frustrated with all the club foot information I find on the internet, though. Most of it says that the club foot will be corrected in the first few years with casting & surgery and the child will walk normally but that isn't the case with me. It makes me feel sad, because I really would've loved to have a much more active childhood. I tried ballet for a few months, but I wouldn't be able to walk at all between classes (I would have a class on Tuesday and couldn't walk until the next Tuesday) so I quit. I did softball for a season but my doctor told me I couldn't because it was putting too much stress on my feet.

Anyway, I'm really glad I found this community, because I've never seen one like this before. I hope it becomes more active!



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Free shoes to a good home [Oct. 28th, 2005|06:35 pm]
Clubfoot Discussion Community

I bought some new shoes yesterday, and, since my feet are different sizes, I had to buy two pairs. I think it's such a shame that I always end up throwing out two perfectly good new shoes, but I can never find anyone who wants my unneeded mates. I thought perhaps I could find someone here who takes the same sizes as me on the opposite feet, and if that's you, I'll happily mail out these shoes to you for free. I just don't want to see them get thrown away and go to waste.

They are plain black sneakers with non-marking soles, and the gimmick is that they're specially made to be non-slip. They are all man-made materials. The right shoe is a size 7 and the left is a 9.5W. Those are women's sizes, but the shoes look like a man could wear them, too.

Click for picture

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Sleepy here, isn't it? [Sep. 23rd, 2005|11:48 am]
Clubfoot Discussion Community
I'm a sixteen year old girl with bilateral talipes.
I'm in denial, so this is just a small step in me facing up to it. ;D
Information is difficult to come by because all the sites out there seem to be for parents, or doctors, nothing for teenagers or adults living with the condition.

If anyones looking *wave* What is it like for you? Or if your a parent, what do people say to you when they see your child in leg casts or whatever?
What is your routine?

Er... what else?
My parents are fighting to get me recognized as a disabled person. The DLA say i'm normal and not entitled to anything. It's not about the funds for us, it's the principle.
Anyway... Nice to meet you.
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Hello [Oct. 10th, 2004|03:13 pm]
Clubfoot Discussion Community

Hi, I just came across the group today, thought I would join. I belong to a couple of email groups, but I don't feel I get the support there that I need. They are wonderful people, but sometimes I just need to vent and not be judged.

Anyway, let me introduce myself. I am the mother of a 3 month old BEAUTIFUL baby boy named Brendan. He was born with a slight case of CF in his left foot. He is being treated with the Ponseti method. He was doing wonderfully with all the casts and what not, but now that we have reached the DBB stage...we seem to have hit a wall. Sometimes I just don't know how to deal with it. I know it is best for him, but it seems to be changing him. He was the happiest baby, laughing and smiling..very loving. Ever since we started trying the DBB (a week and a half ago) he has taken to sleeping like ALL day. He cries like he is being murdered half the time, he rarely smiles. He wakes up screaming like a banshee...even when we don't have the bar on. We are supposed to have it on 23 hours out of the day, but we just haven't been able to. He manages to take his foot out somehow, no matter how tight I make the shoe. I know this is currently the best method of treatment for him..but I just wish there was SOMETHING better...easier. It tears my heart apart to see my wonderful boy go through so much. While I am so thankful that of all things that could have happened to him, it is just this, this correctable thing...I still wonder why. I still wish I could wave a wand and make him all better.

Everyone calls me "a rock". I am supposed to always be the strong one. I don't feel so strong with this. Part of me just wants to give up and say forget the bar! It takes a lot of will power to not cave.

Anyway, this is who I am. I look forward to getting to know all of you.
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the ongoing saga of Ethan's feet [Sep. 2nd, 2004|10:25 am]
Clubfoot Discussion Community

we were wondering if he DID get polio. He WAS sick
between trips. completely isolated. and we watched the
video we got of him at 18 months old and his feet were
straight. (he is 27 months now)club foot doesnt just
come on one day does it? Either your feet are straight
or they arent! he was running all over in the video
and was walking/running in a perfectly normal gait.he
was in stocking feet so we could see the shape of his
foot. so now I just dont know WHAT to think. all I
know is someone better figure this out and fix it so
this kid can lead a normal active litle boy life! it
doesnt slow him down too much but as he gets older it
will be more of a hindrance and kids tease. the
muscles in the leg are all atrophied typical of polio
but also isnt that typical of club foot? man that
appointment cant get here fast enough! I wanna know
what we need to do. and if what we need to do IS
casting I dont wanna have to drive to Iowa city every
week in the winter.
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on to doctor #5 [Aug. 31st, 2004|04:56 pm]
Clubfoot Discussion Community

I cant believe we have been to all these docs and none of them say the same thing. Eric seems to agree with the one we saw today. he also looked at things the ped ortho in minneapolis didnt. here is the story
so we went to our own doc. she didnt think it was a
big deal at all but sent us to an ortho at our
request. that ortho said looks like club foot but I
dont have enough experience to say one way or another.
off to ped ortho who says yeah club foot we can fix it
with ponseti. but the insurance says no we wont pay
for you to go there. so there just happened to be a
local ortho who DOES ponseti that we didnt realize
before. we saw him today. he looked at the xrays we
had done at the ped ortho and said that isnt club
foot. its something else altogether. its similar to
what polio would have done. (perhaps he had polio who
knows, he was adopted from Russia.)
(or perhaps its from the congenital syphilis)
he said it seems
like a tendon is missing altogether. he does not
dorsiflex his foot. the tendons that pull it to the
inside are working fine but the ones that balance by
puling to the outside arent compensating and he thinks
its a neuro problem. so we are off to doctor number 5
in Iowa City. so far we have 4 docs 4 opinions. we
are scheduled for the 13 of sept. Eric may or may not
be able to go with me. I am incredibly bad at driving
and following directions. hopefully I can make it
there! maybe he will be able to get the time off. but
apparantly its right in the middle of a time they
really discourage time off. he wants to reschedule I
say no way its been put off too long and its getting
worse. does anyone know if a club foot worsens over
time if left to its own? his foot is definitely worse
than before. so there ya go. thats my story and Im
stickin to it.
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