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Re: [Adults AMC] New Member

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  • becky deaver
    Hi Mike I m also 48 and also live in Massachusetts. When I needed surgery on my knee I tried all sorts of local places in and around Boston for someone who
    Message 1 of 16 , Dec 31, 2001
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      Hi Mike
      I'm also 48 and also live in Massachusetts. When I
      needed surgery on my knee I tried all sorts of local
      places in and around Boston for someone who knew
      something about AMC for the surgery. I finally did
      find a Dr. in Danvers (northshore), but he really
      didn't know much about it either.
      As far as I could tell in all my calls etc., Dr.s here
      are only interested in children. All doctors I was
      able to determine had experience with AMC (like at
      Children's Hospital Boston) would not see me because I
      am an adult.
      I have been experiencing lots of new problems I assume
      goes with AMC and aging, so if you find a group/person
      please let me know. In the meantime if you want to
      exchange information and things that have been
      happening that you feel are age related (or not)
      please feel free to also write to me off list ...or
      onlist is fine too..
      Becky Deaver
      (beck9012@...)

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    • Mike Murphy
      ... New Year, I have also dealt with Childrens there is a doctor doing a study on AMC in aadults but I lost his name I am trying to get again I will let you
      Message 2 of 16 , Jan 1, 2002
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        --- becky deaver <beck0912@...> wrote:
        > Hi Mike
        > I'm also 48 and also live in Massachusetts. When I
        > needed surgery on my knee I tried all sorts of local
        > places in and around Boston for someone who knew
        > something about AMC for the surgery. I finally did
        > find a Dr. in Danvers (northshore), but he really
        > didn't know much about it either.
        > As far as I could tell in all my calls etc., Dr.s
        > here
        > are only interested in children. All doctors I was
        > able to determine had experience with AMC (like at
        > Children's Hospital Boston) would not see me because
        > I
        > am an adult.
        > I have been experiencing lots of new problems I
        > assume
        > goes with AMC and aging, so if you find a
        > group/person
        > please let me know. In the meantime if you want to
        > exchange information and things that have been
        > happening that you feel are age related (or not)
        > please feel free to also write to me off list ...or
        > onlist is fine too..
        > Becky Deaver
        > (beck9012@...)
        >
        > __________________________________________________
        > Do You Yahoo!?
        > Send your FREE holiday greetings online!
        > http://greetings.yahoo.com
        > Hi Becky thanks for the hello and the info. Happy
        New Year, I have also dealt with Childrens there is a
        doctor doing a study on AMC in aadults but I lost his
        name I am trying to get again I will let you know when
        I find out OK.

        Thanks Mike


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      • becky deaver
        Mike - thanks , I d definately appreciate that! Becky Deaver ... __________________________________________________ Do You Yahoo!? Send your FREE holiday
        Message 3 of 16 , Jan 1, 2002
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          Mike - thanks , I'd definately appreciate that!
          Becky Deaver
          --- Mike Murphy <mikemfm0047@...> wrote:

          > > Hi Becky thanks for the hello and the info. Happy
          > New Year, I have also dealt with Childrens there is
          > a
          > doctor doing a study on AMC in aadults but I lost
          > his
          > name I am trying to get again I will let you know
          > when
          > I find out OK.
          >
          > Thanks Mike
          >
          >
          > __________________________________________________
          > Do You Yahoo!?
          > Send your FREE holiday greetings online!
          > http://greetings.yahoo.com
          >


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        • rnjhamp
          Welcome Melissa! My name is Jen and I am 30 years old, with a mild case of AMC. Like you the doctors told my parents I would never walk, feed myself, etc.
          Message 4 of 16 , Nov 24, 2003
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            Welcome Melissa! My name is Jen and I am 30 years old, with a mild
            case of AMC. Like you the doctors told my parents I would never
            walk, feed myself, etc. By the age of 2.5 I had proved the docs all
            wrong. I too walk with a slight limp and drive a vehicle with no
            modifications. I am currently back in college finishing my Master's
            in Special Education. And my huband, of 10 years, and I are now
            trying to get pregnant. You sound like a very strong, independent
            woman. I think you'll find us to be a fun, supportive, diverse bunch.

            Jen H. :)
          • Roxi McCutchan
            Hey, I am Roxi and I am 34 now. My disease affects both legs and both arms, both hips, neck and spine. My left leg is about 2 inches shorter than right and I
            Message 5 of 16 , Jul 30, 2004
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              Hey, I am Roxi and I am 34 now. My disease affects both legs and both arms, both hips, neck and spine. My left leg is about 2 inches shorter than right and I have a severe curve in spine. I walk unaided but have problems sitting down and now have to use oxygen for lack of lung capacity. I have 20% lung capacity. Luckily, I have only had 2 surgeries.

              Welcome to the group. It has helped me to find other with my disease.

              Welcome
              Roxi

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            • msbells40
              hello, I am the mother of a 22 yr old with arthrogryposis. Her name is Kelly and she got married last August and lives in Germany now.She and her hub want to
              Message 6 of 16 , Mar 5, 2005
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                hello, I am the mother of a 22 yr old with arthrogryposis. Her name
                is Kelly and she got married last August and lives in Germany
                now.She and her hub want to have kids. I was wondering if anyone
                could give me advice to pass onto her for example things like being
                able to carry the baby. She can walk, has a limp due to one leg
                being longer than the other, also we talked to a geneticist when she
                was small and they felt her type of AMC was not hereditary. Any help
                would be appreciated,,,thanks
              • 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 7 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 8 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 9 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 10 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 11 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 12 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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