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Re: [Arthrogryposis Support Group] Inquiry on Illizarov procedure for AMC

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  • Dimitra Giannopoulou
    our daughter Melina, has had this procedure. 2 years ago for her elbow and the outcome was a surprise and a miracle. During Julyt she had it for one of her
    Message 1 of 15 , Jan 1, 2008
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      our daughter Melina, has had this procedure.
      2 years ago for her elbow and the outcome was a surprise and a miracle.
      During Julyt she had it for one of her feet.
      Melina was born with club feet (among othet symptoms). She had PT sessions
      daily from 6 days old and when 1 year old had a surgery to the achillius
      tendons and putting the feet bones in place. whe continued PT aggresively. 2
      years ago her left foot (only) was getting back again and in July she had
      an Illizarov device for getting her foot. The foot came straight but it is
      too early to have a final conclusion about it. Until the end of this week
      she has another appointment with her doctor to check it.
      If you are still interested i will be happy to give you details and further
      information.
      Her father and I are very positive towards Illizarov device and procedure.
      Dimitra (Greece)


      2007/12/29, snordinmy <snordinmy@...>:
      >
      > Hi there, my name is Suraya. I have a daughter who is 4 yrs old and has
      > AMC. She was born
      > with stiffness of her hands, knees and ankles (club foot) but with
      > consistent therapy since
      > birth, she has acquired strength and usage of her upper limbs. She's
      > crawling but not weight
      > bearing. She has not done any surgery and so her doctors are now
      > suggesting that we use
      > the Illizarov procedure for her lower limbs. I was hoping to get in touch
      > with any parents of
      > an AMC child who has gone through the Illizarov procedure.
      >
      > Hope to hear from you. Thanks
      >
      >
      >


      [Non-text portions of this message have been removed]
    • Dean Cascio
      Brian does not have AMC, but this is still a very inspirational video. Dean http://www.youtube.com/watch?v=PIxhfdblYts [Non-text portions of this message have
      Message 2 of 15 , Jan 1, 2008
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        Brian does not have AMC, but this is still a very inspirational video.
        Dean

        http://www.youtube.com/watch?v=PIxhfdblYts


        [Non-text portions of this message have been removed]
      • HGPinTexas@aol.com
        Thank you for sharing Donna Carleton 817.235.9225 ... From: Dean Cascio To: arthrogryposissupportgroup@yahoogroups.com Sent: Tue, 1
        Message 3 of 15 , Jan 2, 2008
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          Thank you for sharing


          Donna Carleton
          817.235.9225


          -----Original Message-----
          From: Dean Cascio <deancascio@...>
          To: arthrogryposissupportgroup@yahoogroups.com
          Sent: Tue, 1 Jan 2008 7:02 pm
          Subject: [Arthrogryposis Support Group] Great inspirational video for kids with AMC






          Brian does not have AMC, but this is still a very inspirational video.
          Dean

          http://www.youtube.com/watch?v=PIxhfdblYts

          [Non-text portions of this message have been removed]





          ________________________________________________________________________
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          [Non-text portions of this message have been removed]
        • Suraya Nordin
          Hi Dimitri, thanks for your reply. My husband and I have decided to proceed with the Illizarov procedure. We are planning to proceed with the surgery before
          Message 4 of 15 , Jan 3, 2008
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            Hi Dimitri, thanks for your reply. My husband and I
            have decided to proceed with the Illizarov procedure.
            We are planning to proceed with the surgery before
            this month ends. It would be nice if you could share
            some of your daughter's experiences with us i.e the
            pain (if any), the healing process and how was she
            coping with the device being on her. How long was she
            on it? Can you send us some picts? Thanks again and we
            wish you and your family a Happy New Year. Suraya

            --- Dimitra Giannopoulou <dimigian@...> wrote:

            > our daughter Melina, has had this procedure.
            > 2 years ago for her elbow and the outcome was a
            > surprise and a miracle.
            > During Julyt she had it for one of her feet.
            > Melina was born with club feet (among othet
            > symptoms). She had PT sessions
            > daily from 6 days old and when 1 year old had a
            > surgery to the achillius
            > tendons and putting the feet bones in place. whe
            > continued PT aggresively. 2
            > years ago her left foot (only) was getting back
            > again and in July she had
            > an Illizarov device for getting her foot. The foot
            > came straight but it is
            > too early to have a final conclusion about it. Until
            > the end of this week
            > she has another appointment with her doctor to check
            > it.
            > If you are still interested i will be happy to give
            > you details and further
            > information.
            > Her father and I are very positive towards Illizarov
            > device and procedure.
            > Dimitra (Greece)
            >
            >
            > 2007/12/29, snordinmy <snordinmy@...>:
            > >
            > > Hi there, my name is Suraya. I have a daughter
            > who is 4 yrs old and has
            > > AMC. She was born
            > > with stiffness of her hands, knees and ankles
            > (club foot) but with
            > > consistent therapy since
            > > birth, she has acquired strength and usage of her
            > upper limbs. She's
            > > crawling but not weight
            > > bearing. She has not done any surgery and so her
            > doctors are now
            > > suggesting that we use
            > > the Illizarov procedure for her lower limbs. I was
            > hoping to get in touch
            > > with any parents of
            > > an AMC child who has gone through the Illizarov
            > procedure.
            > >
            > > Hope to hear from you. Thanks
            > >
            > >
            > >
            >
            >
            > [Non-text portions of this message have been
            > removed]
            >
            >



            ____________________________________________________________________________________
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          • vicki blah
            my son has had illizarov frame on twice .His leg was shorter thanhe other & his knee was flexed so he couldnt bend or straighten it at all, it did work to a
            Message 5 of 15 , Jan 4, 2008
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              my son has had illizarov frame on twice .His leg was shorter thanhe other & his knee was flexed so he couldnt bend or straighten it at all, it did work to a certain extent ,it straightened the knee to some degree & lengthened as well.he doctors also had to do a muscle & tendon release ,but to no avail. My son did experiece pain but only realy for the first few weeks after surgury,after a while he was weight bearing but not for very long periods,i also had to do the lengthenings myself ,there are a series of nuts that you have to tighten everyday but thats not too bad ,not as bad as you first think.As i said it did work to a certain extent, there will be minor infections but we wrapped bits of gauze around the pins soaked in betadine when ever the sight became red & swollen that worked well. good luck hope everything works out


              To: arthrogryposissupportgroup@yahoogroups.comFrom: snordinmy@...: Thu, 3 Jan 2008 17:00:26 -0800Subject: Re: [Arthrogryposis Support Group] Inquiry on Illizarov procedure for AMC




              Hi Dimitri, thanks for your reply. My husband and Ihave decided to proceed with the Illizarov procedure.We are planning to proceed with the surgery beforethis month ends. It would be nice if you could sharesome of your daughter's experiences with us i.e thepain (if any), the healing process and how was shecoping with the device being on her. How long was sheon it? Can you send us some picts? Thanks again and wewish you and your family a Happy New Year. Suraya--- Dimitra Giannopoulou <dimigian@...> wrote:> our daughter Melina, has had this procedure.> 2 years ago for her elbow and the outcome was a> surprise and a miracle.> During Julyt she had it for one of her feet.> Melina was born with club feet (among othet> symptoms). She had PT sessions> daily from 6 days old and when 1 year old had a> surgery to the achillius> tendons and putting the feet bones in place. whe> continued PT aggresively. 2> years ago her left foot (only) was getting back> again and in July she had> an Illizarov device for getting her foot. The foot> came straight but it is> too early to have a final conclusion about it. Until> the end of this week> she has another appointment with her doctor to check> it.> If you are still interested i will be happy to give> you details and further> information.> Her father and I are very positive towards Illizarov> device and procedure.> Dimitra (Greece)> > > 2007/12/29, snordinmy <snordinmy@...>:> >> > Hi there, my name is Suraya. I have a daughter> who is 4 yrs old and has> > AMC. She was born> > with stiffness of her hands, knees and ankles> (club foot) but with> > consistent therapy since> > birth, she has acquired strength and usage of her> upper limbs. She's> > crawling but not weight> > bearing. She has not done any surgery and so her> doctors are now> > suggesting that we use> > the Illizarov procedure for her lower limbs. I was> hoping to get in touch> > with any parents of> > an AMC child who has gone through the Illizarov> procedure.> >> > Hope to hear from you. Thanks> >> > > >> > > [Non-text portions of this message have been> removed]> > __________________________________________________________Looking for last minute shopping deals? Find them fast with Yahoo! Search. http://tools.search.yahoo.com/newsearch/category.php?category=shopping







              [Non-text portions of this message have been removed]
            • Dimitra Giannopoulou
              Dear Suraya, sorry for getting back late. I am pregnant, third child, and i am due until this month. I will send pictures tomorrow. Melina is a very good child
              Message 6 of 15 , Jan 6, 2008
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                Dear Suraya,
                sorry for getting back late. I am pregnant, third child, and i am due until
                this month.
                I will send pictures tomorrow.
                Melina is a very good child that has cope with pain with patience. Daily
                aggressive one hour PT sessions.
                Now she is eight and a half year old and she looses her patience sometimes
                easier.
                As i told you she had Illizarov device in July. She stayed in hospital 4
                days. Her dad was with her. I was in bed because of bleeding. Her doctor is
                not very positive with pain killers, so she had some only the first couple
                of days. She was feeling pain after all a device was out in her foot. One
                week after she came home she started putting her foot down and it was in no
                time that she started walking with the device on. In the beginning she used
                a "walker" (i am not sure about the type) a very simple one. But shortly
                afterwards she walked alone.
                She had the device for two months. But this happened because when they
                initially placed the device they were able to fix it in the desired
                position. So no adjustments were necessary to be done from us (by screwing
                etc). I remember that her doctor had mentioned a year ago that illizarov
                device stays on for two months after the joint had reached the desired or
                best possible position.
                Initially we were told that after the surgery she will not have any movement
                at the ankle and that she will be obliged to wear a sole support within
                her shoe. It looks like that there is some movement, but this is something
                we will know for sure tomorrow.
                The device was taken off without surgery or pain killers. Tough yes, but
                getting anesthesia again is tougher too.
                Our daughter loves food. A giant ice cream for two days made her forget
                everything.
                The funny thing is that after taking illizarov off it took her much more
                time to put her leg down and try to walk. She is not walking properly even
                now. She has some PT session during November and it seemed that she will be
                walking good but she keeps "protecting" her foot. However, when she plays
                soccer she has no problem or feel pain.
                Again she used a walker for starting to walk after the device was off. But
                she used it only for a week and it looks like that she needed it for
                psychological support.
                I might not have answered all your questions. Do not hesitate to ask me
                again anything you might need to learn.
                Dimitra



                2008/1/4, Suraya Nordin <snordinmy@...>:
                >
                > Hi Dimitri, thanks for your reply. My husband and I
                > have decided to proceed with the Illizarov procedure.
                > We are planning to proceed with the surgery before
                > this month ends. It would be nice if you could share
                > some of your daughter's experiences with us i.e the
                > pain (if any), the healing process and how was she
                > coping with the device being on her. How long was she
                > on it? Can you send us some picts? Thanks again and we
                > wish you and your family a Happy New Year. Suraya
                >
                > --- Dimitra Giannopoulou <dimigian@... <dimigian%40gmail.com>>
                > wrote:
                >
                > > our daughter Melina, has had this procedure.
                > > 2 years ago for her elbow and the outcome was a
                > > surprise and a miracle.
                > > During Julyt she had it for one of her feet.
                > > Melina was born with club feet (among othet
                > > symptoms). She had PT sessions
                > > daily from 6 days old and when 1 year old had a
                > > surgery to the achillius
                > > tendons and putting the feet bones in place. whe
                > > continued PT aggresively. 2
                > > years ago her left foot (only) was getting back
                > > again and in July she had
                > > an Illizarov device for getting her foot. The foot
                > > came straight but it is
                > > too early to have a final conclusion about it. Until
                > > the end of this week
                > > she has another appointment with her doctor to check
                > > it.
                > > If you are still interested i will be happy to give
                > > you details and further
                > > information.
                > > Her father and I are very positive towards Illizarov
                > > device and procedure.
                > > Dimitra (Greece)
                > >
                > >
                > > 2007/12/29, snordinmy <snordinmy@... <snordinmy%40yahoo.com>>:
                > > >
                > > > Hi there, my name is Suraya. I have a daughter
                > > who is 4 yrs old and has
                > > > AMC. She was born
                > > > with stiffness of her hands, knees and ankles
                > > (club foot) but with
                > > > consistent therapy since
                > > > birth, she has acquired strength and usage of her
                > > upper limbs. She's
                > > > crawling but not weight
                > > > bearing. She has not done any surgery and so her
                > > doctors are now
                > > > suggesting that we use
                > > > the Illizarov procedure for her lower limbs. I was
                > > hoping to get in touch
                > > > with any parents of
                > > > an AMC child who has gone through the Illizarov
                > > procedure.
                > > >
                > > > Hope to hear from you. Thanks
                > > >
                > > >
                > > >
                > >
                > >
                > > [Non-text portions of this message have been
                > > removed]
                > >
                > >
                >
                > __________________________________________________________
                > Looking for last minute shopping deals?
                > Find them fast with Yahoo! Search.
                > http://tools.search.yahoo.com/newsearch/category.php?category=shopping
                >
                >
                >


                [Non-text portions of this message have been removed]
              • Suraya Nordin
                Wow Dimitri! It sounds so good in that she is able to stand and walk after the whole process. Everyday Sofia will tell me that she will walk after the
                Message 7 of 15 , Jan 6, 2008
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                  Wow Dimitri! It sounds so good in that she is able to
                  stand and walk after the whole process. Everyday Sofia
                  will tell me that she will walk after the operation
                  and I will response will encouragement but deep in my
                  heart I'm so afraid that it may not come true. Though
                  with the contractures in her knees and foot, she's
                  still able to kick and move her ankle and toes. So I
                  hope these are signs that she may response well and
                  weight-bear with or without support...either way I'm
                  happy! Thanks so much for your reply. Hope to see the
                  picts soon. You take care & will keep in touch.
                  --- Dimitra Giannopoulou <dimigian@...> wrote:

                  > Dear Suraya,
                  > sorry for getting back late. I am pregnant, third
                  > child, and i am due until
                  > this month.
                  > I will send pictures tomorrow.
                  > Melina is a very good child that has cope with pain
                  > with patience. Daily
                  > aggressive one hour PT sessions.
                  > Now she is eight and a half year old and she looses
                  > her patience sometimes
                  > easier.
                  > As i told you she had Illizarov device in July. She
                  > stayed in hospital 4
                  > days. Her dad was with her. I was in bed because of
                  > bleeding. Her doctor is
                  > not very positive with pain killers, so she had some
                  > only the first couple
                  > of days. She was feeling pain after all a device was
                  > out in her foot. One
                  > week after she came home she started putting her
                  > foot down and it was in no
                  > time that she started walking with the device on.
                  > In the beginning she used
                  > a "walker" (i am not sure about the type) a very
                  > simple one. But shortly
                  > afterwards she walked alone.
                  > She had the device for two months. But this happened
                  > because when they
                  > initially placed the device they were able to fix
                  > it in the desired
                  > position. So no adjustments were necessary to be
                  > done from us (by screwing
                  > etc). I remember that her doctor had mentioned a
                  > year ago that illizarov
                  > device stays on for two months after the joint had
                  > reached the desired or
                  > best possible position.
                  > Initially we were told that after the surgery she
                  > will not have any movement
                  > at the ankle and that she will be obliged to wear a
                  > sole support within
                  > her shoe. It looks like that there is some movement,
                  > but this is something
                  > we will know for sure tomorrow.
                  > The device was taken off without surgery or pain
                  > killers. Tough yes, but
                  > getting anesthesia again is tougher too.
                  > Our daughter loves food. A giant ice cream for two
                  > days made her forget
                  > everything.
                  > The funny thing is that after taking illizarov off
                  > it took her much more
                  > time to put her leg down and try to walk. She is not
                  > walking properly even
                  > now. She has some PT session during November and it
                  > seemed that she will be
                  > walking good but she keeps "protecting" her foot.
                  > However, when she plays
                  > soccer she has no problem or feel pain.
                  > Again she used a walker for starting to walk after
                  > the device was off. But
                  > she used it only for a week and it looks like that
                  > she needed it for
                  > psychological support.
                  > I might not have answered all your questions. Do not
                  > hesitate to ask me
                  > again anything you might need to learn.
                  > Dimitra
                  >
                  >
                  >
                  > 2008/1/4, Suraya Nordin <snordinmy@...>:
                  > >
                  > > Hi Dimitri, thanks for your reply. My husband
                  > and I
                  > > have decided to proceed with the Illizarov
                  > procedure.
                  > > We are planning to proceed with the surgery before
                  > > this month ends. It would be nice if you could
                  > share
                  > > some of your daughter's experiences with us i.e
                  > the
                  > > pain (if any), the healing process and how was she
                  > > coping with the device being on her. How long was
                  > she
                  > > on it? Can you send us some picts? Thanks again
                  > and we
                  > > wish you and your family a Happy New Year. Suraya
                  > >
                  > > --- Dimitra Giannopoulou <dimigian@...
                  > <dimigian%40gmail.com>>
                  > > wrote:
                  > >
                  > > > our daughter Melina, has had this procedure.
                  > > > 2 years ago for her elbow and the outcome was a
                  > > > surprise and a miracle.
                  > > > During Julyt she had it for one of her feet.
                  > > > Melina was born with club feet (among othet
                  > > > symptoms). She had PT sessions
                  > > > daily from 6 days old and when 1 year old had a
                  > > > surgery to the achillius
                  > > > tendons and putting the feet bones in place. whe
                  > > > continued PT aggresively. 2
                  > > > years ago her left foot (only) was getting back
                  > > > again and in July she had
                  > > > an Illizarov device for getting her foot. The
                  > foot
                  > > > came straight but it is
                  > > > too early to have a final conclusion about it.
                  > Until
                  > > > the end of this week
                  > > > she has another appointment with her doctor to
                  > check
                  > > > it.
                  > > > If you are still interested i will be happy to
                  > give
                  > > > you details and further
                  > > > information.
                  > > > Her father and I are very positive towards
                  > Illizarov
                  > > > device and procedure.
                  > > > Dimitra (Greece)
                  > > >
                  > > >
                  > > > 2007/12/29, snordinmy <snordinmy@...
                  > <snordinmy%40yahoo.com>>:
                  > > > >
                  > > > > Hi there, my name is Suraya. I have a daughter
                  > > > who is 4 yrs old and has
                  > > > > AMC. She was born
                  > > > > with stiffness of her hands, knees and ankles
                  > > > (club foot) but with
                  > > > > consistent therapy since
                  > > > > birth, she has acquired strength and usage of
                  > her
                  > > > upper limbs. She's
                  > > > > crawling but not weight
                  > > > > bearing. She has not done any surgery and so
                  > her
                  > > > doctors are now
                  > > > > suggesting that we use
                  > > > > the Illizarov procedure for her lower limbs. I
                  > was
                  > > > hoping to get in touch
                  > > > > with any parents of
                  > > > > an AMC child who has gone through the
                  > Illizarov
                  > > > procedure.
                  > > > >
                  > > > > Hope to hear from you. Thanks
                  > > > >
                  > > > >
                  > > > >
                  > > >
                  > > >
                  > > > [Non-text portions of this message have been
                  > > > removed]
                  > > >
                  > > >
                  > >
                  > >
                  >
                  __________________________________________________________
                  > > Looking for last minute shopping deals?
                  > > Find them fast with Yahoo! Search.
                  > >
                  >
                  http://tools.search.yahoo.com/newsearch/category.php?category=shopping
                  > >
                  > >
                  > >
                  >
                  >
                  > [Non-text portions of this message have been
                  > removed]
                  >
                  >

                  Suraya, mother to Merissa, 8yrs old and Sofia, 4yrs old


                  ____________________________________________________________________________________
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                • Allyson
                  As some who had this surgery done, i can honestly say it was the most painful thing i ever felt. however, had it worked for me, i would probably think it was
                  Message 8 of 15 , Jan 8, 2008
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                    As some who had this surgery done, i can honestly say it was the most painful thing i ever felt. however, had it worked for me, i would probably think it was worth it. as far as dealing with the whole contraption when i see someone with it i have flash backs and get very sick to my stomch. I'm not saying any of this to scar you, but plz do be propared for it. i was between 7-9 years old when i had it done, its one thing i remember as if it was yesterday. I have always handled pain very well i have broken 4 or 5 bones and only 3 i went to the ER for the other 2 i never knew were broken until later X-Rays showed old breaks. I had the thing on for 6 weeks and had to fully rotate the screws one turn each day, which was extreamly painful. My mom now almost 20 years later tells me it was the 1st and only time she ever saw me come so close to breaking down and just giving up, i'm not a person that gives easy, heck i'm not a person that gives up ever.

                    the year after i had it done they actually insated that any person having the surgery done had to undergo a psych exam to ensure that they emotionally could handle the surgery. Any thats my experance with it, just wanted to share so you could really have an idea and be prepared for it. good luck hope it all goes well and works : )

                    Ally

                    Suraya Nordin <snordinmy@...> wrote:
                    Hi Dimitri, thanks for your reply. My husband and I
                    have decided to proceed with the Illizarov procedure.
                    We are planning to proceed with the surgery before
                    this month ends. It would be nice if you could share
                    some of your daughter's experiences with us i.e the
                    pain (if any), the healing process and how was she
                    coping with the device being on her. How long was she
                    on it? Can you send us some picts? Thanks again and we
                    wish you and your family a Happy New Year. Suraya

                    --- Dimitra Giannopoulou <dimigian@...> wrote:

                    > our daughter Melina, has had this procedure.
                    > 2 years ago for her elbow and the outcome was a
                    > surprise and a miracle.
                    > During Julyt she had it for one of her feet.
                    > Melina was born with club feet (among othet
                    > symptoms). She had PT sessions
                    > daily from 6 days old and when 1 year old had a
                    > surgery to the achillius
                    > tendons and putting the feet bones in place. whe
                    > continued PT aggresively. 2
                    > years ago her left foot (only) was getting back
                    > again and in July she had
                    > an Illizarov device for getting her foot. The foot
                    > came straight but it is
                    > too early to have a final conclusion about it. Until
                    > the end of this week
                    > she has another appointment with her doctor to check
                    > it.
                    > If you are still interested i will be happy to give
                    > you details and further
                    > information.
                    > Her father and I are very positive towards Illizarov
                    > device and procedure.
                    > Dimitra (Greece)
                    >
                    >
                    > 2007/12/29, snordinmy <snordinmy@...>:
                    > >
                    > > Hi there, my name is Suraya. I have a daughter
                    > who is 4 yrs old and has
                    > > AMC. She was born
                    > > with stiffness of her hands, knees and ankles
                    > (club foot) but with
                    > > consistent therapy since
                    > > birth, she has acquired strength and usage of her
                    > upper limbs. She's
                    > > crawling but not weight
                    > > bearing. She has not done any surgery and so her
                    > doctors are now
                    > > suggesting that we use
                    > > the Illizarov procedure for her lower limbs. I was
                    > hoping to get in touch
                    > > with any parents of
                    > > an AMC child who has gone through the Illizarov
                    > procedure.
                    > >
                    > > Hope to hear from you. Thanks
                    > >
                    > >
                    > >
                    >
                    >
                    > [Non-text portions of this message have been
                    > removed]
                    >
                    >

                    __________________________________________________________
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                    [Non-text portions of this message have been removed]
                  • Dimitra Giannopoulou
                    Dear Ally, though i am not the one with AMC i need to say one thing or two for the new members that come in the group and may seek information based on
                    Message 9 of 15 , Jan 8, 2008
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                      Dear Ally,

                      though i am not the one with AMC i need to say one thing or two for the new
                      members that come in the group and may seek information based on experience

                      1. The procedure was done years ago. Things were so much different then. My
                      daughter had the Illizarove device on her elbow, 2003, in order to achive
                      passive flexion. There was turning screws, 1 full turn daily. She attended
                      kinder garden at the time and she had 2 major falls on the device. She did
                      not need even painkiller. Just extra hugs and kisses. not ain any case am I
                      saying it is pain free.
                      Also, 6 months later her doctor said that they had new results from
                      patients stating that Illizarove has to stay on for two months after the
                      goal has been achived. something that was not known when my daughter had the
                      elbow device but known six months later.

                      2. When my daugther had the device on her foot, during one of our visits
                      to her doctor we saw a mother, bit overweight, with broken leg and heavy
                      cast. When she saw Melina she turned her face away probably feeling the
                      same sick as you mention. Only my Melina now walks and she has a limp. Also,
                      years ago, when we started discussing the Illizarove procedure, I met two
                      guys who has a bike accident. I asked them about the device since one of
                      them had it on. They almost had the same injury. Broken bones above the
                      ankle. One had stardard procedure and he has a sore ankle and a shorter leg
                      with limited action and the other was still with the device on but he was
                      ending the healing period and was very happy with the outcome at that time.
                      I have not met them since so i do not know what further has happened. The
                      first one complaint for pain and lack of action, when the other was very
                      optimistic that he would be able to ride bikes again.

                      It may not be the most beautifull thing to watch at but it definitely works
                      wonders. I am sure that within the next five years its appereance will
                      change dramatically since it is being used more and more.

                      Dimitra

                      2008/1/8, Allyson <allycat70001@...>:
                      >
                      > As some who had this surgery done, i can honestly say it was the most
                      > painful thing i ever felt. however, had it worked for me, i would probably
                      > think it was worth it. as far as dealing with the whole contraption when i
                      > see someone with it i have flash backs and get very sick to my stomch. I'm
                      > not saying any of this to scar you, but plz do be propared for it. i was
                      > between 7-9 years old when i had it done, its one thing i remember as if it
                      > was yesterday. I have always handled pain very well i have broken 4 or 5
                      > bones and only 3 i went to the ER for the other 2 i never knew were broken
                      > until later X-Rays showed old breaks. I had the thing on for 6 weeks and had
                      > to fully rotate the screws one turn each day, which was extreamly painful.
                      > My mom now almost 20 years later tells me it was the 1st and only time she
                      > ever saw me come so close to breaking down and just giving up, i'm not a
                      > person that gives easy, heck i'm not a person that gives up ever.
                      >
                      > the year after i had it done they actually insated that any person having
                      > the surgery done had to undergo a psych exam to ensure that they emotionally
                      > could handle the surgery. Any thats my experance with it, just wanted to
                      > share so you could really have an idea and be prepared for it. good luck
                      > hope it all goes well and works : )
                      >
                      > Ally
                      >
                      > Suraya Nordin <snordinmy@... <snordinmy%40yahoo.com>> wrote:
                      > Hi Dimitri, thanks for your reply. My husband and I
                      > have decided to proceed with the Illizarov procedure.
                      > We are planning to proceed with the surgery before
                      > this month ends. It would be nice if you could share
                      > some of your daughter's experiences with us i.e the
                      > pain (if any), the healing process and how was she
                      > coping with the device being on her. How long was she
                      > on it? Can you send us some picts? Thanks again and we
                      > wish you and your family a Happy New Year. Suraya
                      >
                      > --- Dimitra Giannopoulou <dimigian@... <dimigian%40gmail.com>>
                      > wrote:
                      >
                      > > our daughter Melina, has had this procedure.
                      > > 2 years ago for her elbow and the outcome was a
                      > > surprise and a miracle.
                      > > During Julyt she had it for one of her feet.
                      > > Melina was born with club feet (among othet
                      > > symptoms). She had PT sessions
                      > > daily from 6 days old and when 1 year old had a
                      > > surgery to the achillius
                      > > tendons and putting the feet bones in place. whe
                      > > continued PT aggresively. 2
                      > > years ago her left foot (only) was getting back
                      > > again and in July she had
                      > > an Illizarov device for getting her foot. The foot
                      > > came straight but it is
                      > > too early to have a final conclusion about it. Until
                      > > the end of this week
                      > > she has another appointment with her doctor to check
                      > > it.
                      > > If you are still interested i will be happy to give
                      > > you details and further
                      > > information.
                      > > Her father and I are very positive towards Illizarov
                      > > device and procedure.
                      > > Dimitra (Greece)
                      > >
                      > >
                      > > 2007/12/29, snordinmy <snordinmy@... <snordinmy%40yahoo.com>>:
                      > > >
                      > > > Hi there, my name is Suraya. I have a daughter
                      > > who is 4 yrs old and has
                      > > > AMC. She was born
                      > > > with stiffness of her hands, knees and ankles
                      > > (club foot) but with
                      > > > consistent therapy since
                      > > > birth, she has acquired strength and usage of her
                      > > upper limbs. She's
                      > > > crawling but not weight
                      > > > bearing. She has not done any surgery and so her
                      > > doctors are now
                      > > > suggesting that we use
                      > > > the Illizarov procedure for her lower limbs. I was
                      > > hoping to get in touch
                      > > > with any parents of
                      > > > an AMC child who has gone through the Illizarov
                      > > procedure.
                      > > >
                      > > > Hope to hear from you. Thanks
                      > > >
                      > > >
                      > > >
                      > >
                      > >
                      > > [Non-text portions of this message have been
                      > > removed]
                      > >
                      > >
                      >
                      > __________________________________________________________
                      > Looking for last minute shopping deals?
                      > Find them fast with Yahoo! Search.
                      > http://tools.search.yahoo.com/newsearch/category.php?category=shopping
                      >
                      > ---------------------------------
                      > Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it
                      > now.
                      >
                      > [Non-text portions of this message have been removed]
                      >
                      >
                      >


                      [Non-text portions of this message have been removed]
                    • Allyson
                      Ok, for the sake of pple seeking information based on experance here is what i wish to god someone would have brought up to me when i had this surgery done:
                      Message 10 of 15 , Jan 8, 2008
                      • 0 Attachment
                        Ok, for the sake of pple seeking information based on experance here is what i wish to god someone would have brought up to me when i had this surgery done:

                        1st to note, the only thing that has change majorly in the last 17 years with this sugery is the length of time it is left on, which i believe greatly does effect the out come. I had it on for i think 6 weeks, it was taken of only a week after reaching the set goal. I which i had it on longer dispite the amouont of pain, it would have at least give my main muscle that held my knee fixed at 45 degrees, the muscle being my hamstring (sp?).

                        2nd. I wish some one would have address what muscles were the ones that were holding my knee in the fixed position and would have disscussed weather or not i had enough active muscle pull against the contrated joint that could with therapy be strengthed to counter recate to the mucles that was holding the contration.

                        now a little info on my physical make up effecting the contration in my knee. I was born with my left leg hyper extetnded and my right leg completely bent at the knee. at birth i came out with my left foot up by my right shoulder and my right foot touching my left butt check. apparently i thought i was a gymnist in the womb. futhermore, very bad lordoesis in my back along with hip contrations oddly they were not dislocated.

                        with that said this surgery would have most likely worked if a.) my hamstring muscle had been lengthen and b.) my hips reset in the proper location.

                        I have done a great deal of reasrch on this surgery over the years cuz yes like most of us not able to walk properly, want nothing in the world more then to be able to walk.

                        The day i had the contraption off was probably one of the most depressed days i have ever been in my life, i knew with in a few hours after it was off that it would not hold and that my dreams of being able to walk, run, and play like everyone else was gone. i rember this so well cuz as a treat to getting it off (it was a outpatiant surgery) was to go get a happy meal, the whole time it took everything in me to hold back the tears and not show deffeet.

                        As far as the pain of the surgery, i garentie you my mom would tell a simmilar story to the other mothers on here that have posted. I took pain killers only for the 12 hrs after the surgery. I was very under weight when i had it done i like weight about 40 pound took my until age 12 to get to 60 lbs. Do to being under weight and the fact that my stomch can not handle more the 2 doses of pain medication in 4 day time, i took no pain meds othter then the 12 hrs after it.

                        I never ever told my mom i was in pain i think it was because i was scared they would abort the rest of the screw turns. I wanted to walk so badly that i was willing to do what ever it took, ya not much has changed since then still would do anything. I'll let you in on a little secret ppl with AMC are great liers about pain, partly cuz we are use to it.

                        For me I've considered having this surgery done again but done the right way addressing the problemed areas mentioned above 1st. Unfortunantly, i'm finished growing and there for am not a great canident for the type of hip surgery required. forthermore, the back surgery would requiring completly repositioning the pelvis and pining and fussing the back. After a surgery like this it is not recomended to get pregnent do to the weaking in the back and pelvis. The only thing i want more in this world then walking is to have children so i with jusst suck it up and live with my elec. w/c and braces when needed to walk very short time.

                        Ok, i feel i have better stated my 2 cents with this surgery.

                        Ally


                        Dimitra Giannopoulou <dimigian@...> wrote:
                        Dear Ally,

                        though i am not the one with AMC i need to say one thing or two for the new
                        members that come in the group and may seek information based on experience

                        1. The procedure was done years ago. Things were so much different then. My
                        daughter had the Illizarove device on her elbow, 2003, in order to achive
                        passive flexion. There was turning screws, 1 full turn daily. She attended
                        kinder garden at the time and she had 2 major falls on the device. She did
                        not need even painkiller. Just extra hugs and kisses. not ain any case am I
                        saying it is pain free.
                        Also, 6 months later her doctor said that they had new results from
                        patients stating that Illizarove has to stay on for two months after the
                        goal has been achived. something that was not known when my daughter had the
                        elbow device but known six months later.

                        2. When my daugther had the device on her foot, during one of our visits
                        to her doctor we saw a mother, bit overweight, with broken leg and heavy
                        cast. When she saw Melina she turned her face away probably feeling the
                        same sick as you mention. Only my Melina now walks and she has a limp. Also,
                        years ago, when we started discussing the Illizarove procedure, I met two
                        guys who has a bike accident. I asked them about the device since one of
                        them had it on. They almost had the same injury. Broken bones above the
                        ankle. One had stardard procedure and he has a sore ankle and a shorter leg
                        with limited action and the other was still with the device on but he was
                        ending the healing period and was very happy with the outcome at that time.
                        I have not met them since so i do not know what further has happened. The
                        first one complaint for pain and lack of action, when the other was very
                        optimistic that he would be able to ride bikes again.

                        It may not be the most beautifull thing to watch at but it definitely works
                        wonders. I am sure that within the next five years its appereance will
                        change dramatically since it is being used more and more.

                        Dimitra

                        2008/1/8, Allyson <allycat70001@...>:
                        >
                        > As some who had this surgery done, i can honestly say it was the most
                        > painful thing i ever felt. however, had it worked for me, i would probably
                        > think it was worth it. as far as dealing with the whole contraption when i
                        > see someone with it i have flash backs and get very sick to my stomch. I'm
                        > not saying any of this to scar you, but plz do be propared for it. i was
                        > between 7-9 years old when i had it done, its one thing i remember as if it
                        > was yesterday. I have always handled pain very well i have broken 4 or 5
                        > bones and only 3 i went to the ER for the other 2 i never knew were broken
                        > until later X-Rays showed old breaks. I had the thing on for 6 weeks and had
                        > to fully rotate the screws one turn each day, which was extreamly painful.
                        > My mom now almost 20 years later tells me it was the 1st and only time she
                        > ever saw me come so close to breaking down and just giving up, i'm not a
                        > person that gives easy, heck i'm not a person that gives up ever.
                        >
                        > the year after i had it done they actually insated that any person having
                        > the surgery done had to undergo a psych exam to ensure that they emotionally
                        > could handle the surgery. Any thats my experance with it, just wanted to
                        > share so you could really have an idea and be prepared for it. good luck
                        > hope it all goes well and works : )
                        >
                        > Ally
                        >
                        > Suraya Nordin <snordinmy@... <snordinmy%40yahoo.com>> wrote:
                        > Hi Dimitri, thanks for your reply. My husband and I
                        > have decided to proceed with the Illizarov procedure.
                        > We are planning to proceed with the surgery before
                        > this month ends. It would be nice if you could share
                        > some of your daughter's experiences with us i.e the
                        > pain (if any), the healing process and how was she
                        > coping with the device being on her. How long was she
                        > on it? Can you send us some picts? Thanks again and we
                        > wish you and your family a Happy New Year. Suraya
                        >
                        > --- Dimitra Giannopoulou <dimigian@... <dimigian%40gmail.com>>
                        > wrote:
                        >
                        > > our daughter Melina, has had this procedure.
                        > > 2 years ago for her elbow and the outcome was a
                        > > surprise and a miracle.
                        > > During Julyt she had it for one of her feet.
                        > > Melina was born with club feet (among othet
                        > > symptoms). She had PT sessions
                        > > daily from 6 days old and when 1 year old had a
                        > > surgery to the achillius
                        > > tendons and putting the feet bones in place. whe
                        > > continued PT aggresively. 2
                        > > years ago her left foot (only) was getting back
                        > > again and in July she had
                        > > an Illizarov device for getting her foot. The foot
                        > > came straight but it is
                        > > too early to have a final conclusion about it. Until
                        > > the end of this week
                        > > she has another appointment with her doctor to check
                        > > it.
                        > > If you are still interested i will be happy to give
                        > > you details and further
                        > > information.
                        > > Her father and I are very positive towards Illizarov
                        > > device and procedure.
                        > > Dimitra (Greece)
                        > >
                        > >
                        > > 2007/12/29, snordinmy <snordinmy@... <snordinmy%40yahoo.com>>:
                        > > >
                        > > > Hi there, my name is Suraya. I have a daughter
                        > > who is 4 yrs old and has
                        > > > AMC. She was born
                        > > > with stiffness of her hands, knees and ankles
                        > > (club foot) but with
                        > > > consistent therapy since
                        > > > birth, she has acquired strength and usage of her
                        > > upper limbs. She's
                        > > > crawling but not weight
                        > > > bearing. She has not done any surgery and so her
                        > > doctors are now
                        > > > suggesting that we use
                        > > > the Illizarov procedure for her lower limbs. I was
                        > > hoping to get in touch
                        > > > with any parents of
                        > > > an AMC child who has gone through the Illizarov
                        > > procedure.
                        > > >
                        > > > Hope to hear from you. Thanks
                        > > >
                        > > >
                        > > >
                        > >
                        > >
                        > > [Non-text portions of this message have been
                        > > removed]
                        > >
                        > >
                        >
                        > __________________________________________________________
                        > Looking for last minute shopping deals?
                        > Find them fast with Yahoo! Search.
                        > http://tools.search.yahoo.com/newsearch/category.php?category=shopping
                        >
                        > ---------------------------------
                        > Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it
                        > now.
                        >
                        > [Non-text portions of this message have been removed]
                        >
                        >
                        >

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                        ---------------------------------
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                        [Non-text portions of this message have been removed]
                      • clpa01
                        HELLO, MY NAME IS CHARLIE, MY SON IS ALREADY 8 AND TURNING NINE THIS YEAR. HE HAS ARTHROGRYPOSIS AND AFFECTS HIS LIMBS. AS PER OUR DOCTOR HERE WHO SEES HIM.
                        Message 11 of 15 , Feb 6, 2012
                        • 0 Attachment
                          HELLO, MY NAME IS CHARLIE,

                          MY SON IS ALREADY 8 AND TURNING NINE THIS YEAR. HE HAS ARTHROGRYPOSIS AND AFFECTS HIS LIMBS. AS PER OUR DOCTOR HERE WHO SEES HIM. HE IS NOT KEEN ON HAVING TO PERFORM THE PROCEDURE YOU JUST MENTIONED. BY THE WAY HE IS AN EXPERT HERE IN OUR COUNTRY. YOU COULD SEARCH ABOUT HIM HE IS DR. JUANITO JAVIER. THE REASIN FOR THIS ADVICE WAS, EVEN IF YOU PERFORM THIS PROCEDURE, THERE WOULD BE NO GUARANTEE THAT THINGS WILL BE OK SINCE THE CORRECTION SHOULD BE BOTH WAYS. MEANING, IF THE PATIENT ISN'T ABLE TO HELP HIMSELF YET, THE CORRECTION WILL BE USELESS. BESIDES, THE MOST IMPORTANT POINT FOR THE POSTPONEMENT OF THE PROCEDURE IS DUE TO AGE. AS HE EXPLAINS, AS THE KID GROWS OLDER, HIS BONES DO CONTINUE TO GROW AS WELL, THEREFORE WE SHOULD WAIT TILL THE BONES ARE MATURE ENOUGH AND THE KID IS TRAINED ENOUGH AS WELL THEN THE CHANCES OF SUCCESS WILL BE HIGHER. I HOPE THAT YOU AND YOUR DAUGHTER GET THROUGH THIS ORDEAL... AS I AM CONSISTENTLY SEEKING WAYS TO IMPROVE MY SON'S CONDITION. IF THERE'S ANYTHING ELSE, I COULD HELP YOU WITH WITH REGARDS TO THIS TOPIC, DON.T HESITATE TO EMAIL ME... MY OTHER AND MOST FREQUENT EMAIL I USE IS charlieang73@... God Bless You!

                          --- In arthrogryposissupportgroup@yahoogroups.com, "snordinmy" <snordinmy@...> wrote:
                          >
                          > Hi there, my name is Suraya. I have a daughter who is 4 yrs old and has AMC. She was born
                          > with stiffness of her hands, knees and ankles (club foot) but with consistent therapy since
                          > birth, she has acquired strength and usage of her upper limbs. She's crawling but not weight
                          > bearing. She has not done any surgery and so her doctors are now suggesting that we use
                          > the Illizarov procedure for her lower limbs. I was hoping to get in touch with any parents of
                          > an AMC child who has gone through the Illizarov procedure.
                          >
                          > Hope to hear from you. Thanks
                          >
                        • Giannopoulou Dimitra
                          Hello Suraya, This is Dimitra from Greece. My daughter is Melina, 12 yo-affected on 4 limbs etc. She has had illizarov procedure to correct her clubfoot. I am
                          Message 12 of 15 , Feb 6, 2012
                          • 0 Attachment
                            Hello Suraya,

                            This is Dimitra from Greece. My daughter is Melina, 12 yo-affected on 4
                            limbs etc. She has had illizarov procedure to correct her clubfoot. I am not
                            sure if your daughter is going to have the same surgery. If yes, let me know
                            and I will get into detail about it. Very generally speaking it was a
                            positive experience for us all.



                            Looking forward to your message.

                            Dimitra



                            From: arthrogryposissupportgroup@yahoogroups.com
                            [mailto:arthrogryposissupportgroup@yahoogroups.com] On Behalf Of clpa01
                            Sent: Monday, February 06, 2012 10:46 AM
                            To: arthrogryposissupportgroup@yahoogroups.com
                            Subject: [Arthrogryposis Support Group] Re: Inquiry on Illizarov procedure
                            for AMC





                            HELLO, MY NAME IS CHARLIE,

                            MY SON IS ALREADY 8 AND TURNING NINE THIS YEAR. HE HAS ARTHROGRYPOSIS AND
                            AFFECTS HIS LIMBS. AS PER OUR DOCTOR HERE WHO SEES HIM. HE IS NOT KEEN ON
                            HAVING TO PERFORM THE PROCEDURE YOU JUST MENTIONED. BY THE WAY HE IS AN
                            EXPERT HERE IN OUR COUNTRY. YOU COULD SEARCH ABOUT HIM HE IS DR. JUANITO
                            JAVIER. THE REASIN FOR THIS ADVICE WAS, EVEN IF YOU PERFORM THIS PROCEDURE,
                            THERE WOULD BE NO GUARANTEE THAT THINGS WILL BE OK SINCE THE CORRECTION
                            SHOULD BE BOTH WAYS. MEANING, IF THE PATIENT ISN'T ABLE TO HELP HIMSELF YET,
                            THE CORRECTION WILL BE USELESS. BESIDES, THE MOST IMPORTANT POINT FOR THE
                            POSTPONEMENT OF THE PROCEDURE IS DUE TO AGE. AS HE EXPLAINS, AS THE KID
                            GROWS OLDER, HIS BONES DO CONTINUE TO GROW AS WELL, THEREFORE WE SHOULD WAIT
                            TILL THE BONES ARE MATURE ENOUGH AND THE KID IS TRAINED ENOUGH AS WELL THEN
                            THE CHANCES OF SUCCESS WILL BE HIGHER. I HOPE THAT YOU AND YOUR DAUGHTER GET
                            THROUGH THIS ORDEAL... AS I AM CONSISTENTLY SEEKING WAYS TO IMPROVE MY SON'S
                            CONDITION. IF THERE'S ANYTHING ELSE, I COULD HELP YOU WITH WITH REGARDS TO
                            THIS TOPIC, DON.T HESITATE TO EMAIL ME... MY OTHER AND MOST FREQUENT EMAIL I
                            USE IS charlieang73@... <mailto:charlieang73%40gmail.com> God Bless
                            You!

                            --- In arthrogryposissupportgroup@yahoogroups.com
                            <mailto:arthrogryposissupportgroup%40yahoogroups.com> , "snordinmy"
                            <snordinmy@...> wrote:
                            >
                            > Hi there, my name is Suraya. I have a daughter who is 4 yrs old and has
                            AMC. She was born
                            > with stiffness of her hands, knees and ankles (club foot) but with
                            consistent therapy since
                            > birth, she has acquired strength and usage of her upper limbs. She's
                            crawling but not weight
                            > bearing. She has not done any surgery and so her doctors are now
                            suggesting that we use
                            > the Illizarov procedure for her lower limbs. I was hoping to get in touch
                            with any parents of
                            > an AMC child who has gone through the Illizarov procedure.
                            >
                            > Hope to hear from you. Thanks
                            >





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