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  • msbells40
    I am the mother of a 25 yr old daughter (Kelly). Kelly has been in Germany for the past 4 yrs and is now living with my husband and I.She has bilateral club
    Message 1 of 16 , Jun 10, 2008
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      I am the mother of a 25 yr old daughter (Kelly). Kelly has been in
      Germany for the past 4 yrs and is now living with my husband and I.She
      has bilateral club foot, contracted wrists and had an osteotomy on her
      Right hip at 18 months of age. Her club foot has always been painful
      for her. She's had 3 surgeries on each foot over the years. Today we
      saw an orthopedic doctor and he took one look at her rt foot and said
      theres no surgery he can do to relieve her pain. He suggested
      amputation. I always knew in the back of my mind that word would come
      up. Her right foot has always been the worst affected part and no
      matter what kind of AFO's we get theres ALWAYS a problem. The doctor
      was very blunt with her and left it entirely up to her. He said if he
      did another surgery on the RT foot she would still have pain and AFO's
      would still give her no additional help. I'm wondering if anyone else
      has gone through this. I thought about getting another opinion, but I
      know just from looking at her foot that it is very deformed and so much
      scar tissue to deal with. Kelly is taking it pretty well, but has so
      many concerns running through her head
    • Allyson
      i d get a 2nd opinion, and perhaps see a pediatric that specializes in foot deformities. i say pediatric, because in my experience so far they seem to have
      Message 2 of 16 , Jun 10, 2008
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        i'd get a 2nd opinion, and perhaps see a pediatric that specializes in foot deformities. i say pediatric, because in my experience so far they seem to have been better at addressing issues that were present since birth. both my feet were clubbed i had surgery on both at 6 months old were they pin and fussed them. my left foot has recently started to try to return to its previous position before pinning but i'm now back in afo's to correct it. both my ankles are very sensitive, my left ankle hurts where the pin was placed and along most of the scar line when i retain fluid or gain the least bit of extra weight oddly it feels as if my foot will explode when i stand up.


        --- On Tue, 6/10/08, msbells40 <msbells40@...> wrote:

        > From: msbells40 <msbells40@...>
        > Subject: [Adults AMC] New Member
        > To: amc_adults@yahoogroups.com
        > Date: Tuesday, June 10, 2008, 4:21 PM
        > I am the mother of a 25 yr old daughter (Kelly). Kelly has
        > been in
        > Germany for the past 4 yrs and is now living with my
        > husband and I.She
        > has bilateral club foot, contracted wrists and had an
        > osteotomy on her
        > Right hip at 18 months of age. Her club foot has always
        > been painful
        > for her. She's had 3 surgeries on each foot over the
        > years. Today we
        > saw an orthopedic doctor and he took one look at her rt
        > foot and said
        > theres no surgery he can do to relieve her pain. He
        > suggested
        > amputation. I always knew in the back of my mind that word
        > would come
        > up. Her right foot has always been the worst affected part
        > and no
        > matter what kind of AFO's we get theres ALWAYS a
        > problem. The doctor
        > was very blunt with her and left it entirely up to her. He
        > said if he
        > did another surgery on the RT foot she would still have
        > pain and AFO's
        > would still give her no additional help. I'm wondering
        > if anyone else
        > has gone through this. I thought about getting another
        > opinion, but I
        > know just from looking at her foot that it is very deformed
        > and so much
        > scar tissue to deal with. Kelly is taking it pretty well,
        > but has so
        > many concerns running through her head
      • msbells40
        Allyson, I tried the pediatric route. No one wants to see a 25 yr old. When Kelly had all her surgeries as a baby and teenager we lived in GA. She went to
        Message 3 of 16 , Jun 11, 2008
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          Allyson, I tried the pediatric route. No one wants to see a 25 yr old.
          When Kelly had all her surgeries as a baby and teenager we lived in GA.
          She went to Scottish Rite Hospital in Atlanta and then followed up with
          Childrens Orthopedics of Atlanta. I even tried Shriners Hospital here
          in Greenville, SC and they wont accept anyone over 18. Seems when you
          turn 18 all of a sudden your arthrogryposis is gone...Its sad...Linda
        • Allyson
          yes i ve had trouble too getting Dr. to see me. my pediatric orthopedic at children s hospital in new orleans saw me until i was 26 ish and did offer to see me
          Message 4 of 16 , Jun 11, 2008
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            yes i've had trouble too getting Dr. to see me. my pediatric orthopedic at children's hospital in new orleans saw me until i was 26 ish and did offer to see me if i couldn't find Dr. that knew what to do.

            allyson


            --- On Wed, 6/11/08, msbells40 <msbells40@...> wrote:

            > From: msbells40 <msbells40@...>
            > Subject: Re: [Adults AMC] New Member
            > To: amc_adults@yahoogroups.com
            > Date: Wednesday, June 11, 2008, 8:05 AM
            > Allyson, I tried the pediatric route. No one wants to see a
            > 25 yr old.
            > When Kelly had all her surgeries as a baby and teenager we
            > lived in GA.
            > She went to Scottish Rite Hospital in Atlanta and then
            > followed up with
            > Childrens Orthopedics of Atlanta. I even tried Shriners
            > Hospital here
            > in Greenville, SC and they wont accept anyone over 18.
            > Seems when you
            > turn 18 all of a sudden your arthrogryposis is gone...Its
            > sad...Linda
          • Allyson
            oh also have you seen a neurologist i know i have a ton of nerve damage from my surgery along with circulation issues in my feet, they tend to stay blue/purple
            Message 5 of 16 , Jun 11, 2008
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              oh also have you seen a neurologist i know i have a ton of nerve damage from my surgery along with circulation issues in my feet, they tend to stay blue/purple always and are ice cold to the touch.


              --- On Wed, 6/11/08, msbells40 <msbells40@...> wrote:

              > From: msbells40 <msbells40@...>
              > Subject: Re: [Adults AMC] New Member
              > To: amc_adults@yahoogroups.com
              > Date: Wednesday, June 11, 2008, 8:05 AM
              > Allyson, I tried the pediatric route. No one wants to see a
              > 25 yr old.
              > When Kelly had all her surgeries as a baby and teenager we
              > lived in GA.
              > She went to Scottish Rite Hospital in Atlanta and then
              > followed up with
              > Childrens Orthopedics of Atlanta. I even tried Shriners
              > Hospital here
              > in Greenville, SC and they wont accept anyone over 18.
              > Seems when you
              > turn 18 all of a sudden your arthrogryposis is gone...Its
              > sad...Linda
            • msbells40
              Kelly hasnt seen a neurologist, but shes like you..cold feet and tingly. I have found her doctor in Ga that she saw as a child and called the office and spoke
              Message 6 of 16 , Jun 11, 2008
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                Kelly hasnt seen a neurologist, but shes like you..cold feet and
                tingly. I have found her doctor in Ga that she saw as a child and
                called the office and spoke with his nurse. She says usually Dr Meehan
                refers older AMC patients to orthos, but in her case she will she what
                she can do. I really would like to talk to him again and get a 2nd
                opinion. The word amputation just makes my skin crawl.
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