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Re: [scoliosis-in-children] barb?

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  • Mary Spiroski
    Barb, My only advice is not to make any haste decisions when I found out about Troilynn s TC I was a complete mess and since there isn t a lot of infomation
    Message 1 of 23 , Dec 29, 2003
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      Barb,

      My only advice is not to make any haste decisions when I found out about
      Troilynn's TC I was a complete mess and since there isn't a lot of
      infomation out there I now know I would have done things differently. My
      daughter who is four now had her surgery 10/12/2002 and we are still dealing
      with the reporcussions of it. I would love to be of any help or even just a
      shoulder to lean on. My prayers are with you and your family.


      >From: "Barb Southwick" <bsouth@...>
      >Reply-To: scoliosis-in-children@yahoogroups.com
      >To: <scoliosis-in-children@yahoogroups.com>
      >Subject: Re: [scoliosis-in-children] barb?
      >Date: Mon, 29 Dec 2003 19:20:14 -0500
      >
      >Thanks. We're actually going to CHOP (CHildren's Hospital of Philadelphia)
      >they have a clinic that specializes in my 22q11.2 deletion syndrome. We
      >will be there in April, my daughter is having palate surgery. I have
      >already spoken to the Ortho, we will be seeing him before the surgery. Not
      >only do they specialize in her syndrome, but they have two of the best
      >orthos in the country who specialize in spinal issues, also. It's just
      >agonizing to wait.
      >
      >It always amazes me that one doctor can look at an xray and not see an
      >anomaly than another can see one. There bones aren't they? Pretty
      >concrete I would think. My daughter cervical spine anomalies (common in
      >this syndrome) that no one could see on xray or CT down here. Once the
      >xrays and CT were sent to Philadelphia the doctor saw the fusion, without a
      >doubt. I guess experience is what is needed in issues like these. I
      >believe we will be in the best hands possible at CHOP.
      >
      >How did you find out your daughter had tethered cord? Did she have any
      >neurological signs? I am sorry to hear that the progression did not stop
      >after the release. Does she have any other anomalies of the spine? How
      >old is she? Thanks again for all the info.
      >
      >Take care.
      >
      >Barb (FL)
      > ----- Original Message -----
      > From: anekkah
      > To: scoliosis-in-children@yahoogroups.com
      > Sent: Monday, December 29, 2003 6:50 PM
      > Subject: [scoliosis-in-children] barb?
      >
      >
      > Has your daughter had an MRI to find out if she indeed did have
      > tethering of the cord and syrinx? If this is even a slight indication
      > it's something that should be addressed by a neurosurgeon. My
      > daughter had her TC released in 2000 in hopes that is would release
      > the pressure on the spine which they believed to cause the scoliosis.
      > But since that time it's only gotten worse despite bracing etc. I
      > don't kno the exact degree because the doctors here say it's gotten
      > no worse even though you can visible see a huge change in her spine.
      > Thank you for clarifying the syndrome your child has, for I have
      > never heard of it before either. But it's always good to know about
      > these things. This board has been a little more busy from the time I
      > joined in last year in hopes of finding out about all surgical
      > treatments besides traditional Harrington rods or fushion which is
      > out of the question for me. I've learned a great deal about the spine
      > since last year, and my daughters progression with the scoliosis.
      > I've had a bit of help also (thanks to Carmell if she belongs to this
      > board also = ) So maybe we can share our insights on what we learn
      > and help one another out. Good or bad experiences with physicians
      > because they all aren't the best, I can attest to that.
      >
      >
      >
      >
      >
      >
      > To Post a message, send it to: scoliosis-in-children@...
      > To Unsubscribe, send a blank message to:
      >scoliosis-in-children-unsubscribe@...
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    • anekkah
      It s just agonizing to wait. Oh tell me about it, been there and still waiting currently. It doesn t get any better the waiting is just the worse. I guess
      Message 2 of 23 , Dec 29, 2003
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        It's just agonizing to wait.

        Oh tell me about it, been there and still waiting currently. It
        doesn't get any better the waiting is just the worse.

        I guess experience is what is needed in issues like these. I
        believe we will be in the best hands possible at CHOP.

        This is absolutley correct, ortho surgeons are experience in all
        different areas. In children such as ours that have other issues that
        surround and maybe compound the spinal anomalies.
        >
        > How did you find out your daughter had tethered cord? Did she have
        any neurological signs?

        I took her to my pediatrician early on about 3 months stating there
        was something wrong I just wasn't sure what. She told me it was
        nothing although she was not developmentally on track, not sitting
        up, not bearing weight on legs etc. Her head had a tilt to it to the
        right. I took her over and over again, and got the on call doc
        because our ped was out sick. That was the best thing that happened
        to us. You could see in his face he knew something was wrong. He sent
        us over to the hospital for an MRI and low and behold was the
        tethering. We were into the neuro surgeon one week later but had to
        wait 6 more months for surgery because she has other illnesses that
        plaqued her (she has 12 docs I'll email you about it at a later date
        otherwise this will be a novel LOL).

        I am sorry to hear that the progression did not stop after the
        release.

        Me too it doesn't help that she is growing like wild flower, it just
        gets worse when she goes through growth spurts like this one. It's a
        good thing that she's not so small anymore she was stuck at 14 lbs as
        a baby forever and after 2 she just started off.

        Does she have any other anomalies of the spine? How old is she?

        She is 4 and no anomalies so far, but I haven't had the best luck
        with doctors. I was referred to a specialist out of state and found
        that he had a colleaque in my state. We wasted a bunch of time and
        money on travel expenses on top of getting our hopes up that this
        surgical treatment would be the best for both her scoliosis and her
        lung issues which get worse as she progresses. I actually had a
        shouting match with this doctor for the hassles he and his staff had
        put us through and told him I wouldn't let him operate on my dog.
        Since then a few parents have contacted me and had the same
        complaints about this doctor and his staff, we have made complaints
        to the hosital but nothing has happened. So we wrote the surgeon I
        wanted to see out of state to have him removed from the study. I have
        also sent a complaint to the medical board.

        We are now taking her to the surgeon I was orginally referred to out
        of state and that has been a long wait because he has so many
        patients. I wouldn't be surprised if they found fused ribs or other
        anomalies when we got through the ct scan and other testing all over
        again. This happened to another one of my internet buddies who
        traveled from another country with her child. Her docs told her it
        was just scoliois, when she saw this surgeon she found out he had
        double fused ribs on one side. He just had his surgery at the
        beginning of the month and is doing great. So I'm hoping for the same
        outcome. My daughter is a strong little girl, she has been through
        heck and back in her little lifetime.

        It's so nice to have other parents to talk to, I hope your waiting
        goes by quickly and we can keep one another updated.


        Anekka
      • advoor@hotmail.com
        Please read the attached file.
        Message 3 of 23 , Apr 26 4:20 PM
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          Please read the attached file.
        • alla_bout07
          My name is amber and i am 16. when i was 12 i was diagnosed with scoliosis. I had a 52 and 64. When i was 13 i had the 9 and a half hour surgery to fix my
          Message 4 of 23 , May 9, 2005
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            My name is amber and i am 16. when i was 12 i was diagnosed with
            scoliosis. I had a 52 and 64. When i was 13 i had the 9 and a half
            hour surgery to fix my curve. during the surgery he realized i had
            spots that looked like huge birth marks, but they were not, they
            were actually small (non cancerous)tumors.all was fine up untill
            about 9 moths ago. i began havin really bad shoulder pain and i was
            put into thearpy, hoping that it would fix the pain. the therapy
            didnt stop the pain so my doctor(doctor loveless)decided that
            removing the rods would end my pain and that my spine wouldnt move
            because it was like(as he explained)that by putting the rods with
            the bone tissue owuld be like fixing a tree that had been damaged
            and someone tried string to fix it. So on march 25 2005 i had the
            surgery to remove them(this was so much easier then actually putting
            them in) the pain automatically went away. then about 1 month later
            i began having side cramps but i didnt think anything of it. Thursday
            (5/5/05) i went for a six week check up and he said everything on
            the outside looked fine. But when he looked at my xrays he realized
            that it wasnt. My spine had began to move to the left side, which
            was causing the cramps. now he says that i have some bone disease
            that causes bones to heal really really slow or not at all. and the
            only reason the spine didnt move was beacuse the rods were holding
            on it. and also he thinks my spine is also swelling from the
            outside. so know i have to have a cat scan to cheack out my spine
            to see if there is anything else wrong.(this is all related to
            having the large birth mark lookin spots)so now he has to go back in
            and put the rods back in and then 9 moths to 1 yr later he will go
            back in and put more bone tissue to make sure it is really strong.
            he also said he has ony heard about this happening once and has
            never had any experience with a case like this, so what i was
            wondering has anybody else heard of anything like this or
            experienced this.

            thanks
            amber
          • drlz@optonline.net
            Important document!
            Message 5 of 23 , Nov 18, 2005
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              Important document!
            • Ellie Salters
              Hi, VlAxGRA VALxlUM ClAxLIS AMBxlEN Economize over 50% http://www.pertionkadesunlas.com _____ Cued by his words the lights died and darkness filled the
              Message 6 of 23 , Oct 2, 2006
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                Hi,

                VlAxGRA

                VALxlUM

                ClAxLIS

                AMBxlEN

                 

                Cued by his words the lights died and darkness filled the Veritorium.
                Both, he said, blowing a ring of blue smoke towards the ceiling. I
                I started towards The Commander, to relieve him of his gun-saw that

              • Rameshwar Richard
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                Message 7 of 23 , Oct 3, 2006
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                  Hi,

                  ClArLIS

                  VlArGRA

                  VALrlUM

                  AMBrlEN

                   

                  I do not know. I was sent only to warn. May the God of Battles go
                  individual, dressed completely in black, who sat on a little platform
                  It was waking up that was difficult. Some hours had slipped by

                • Esperanta Sipes
                  Hi, VlArGRA AMBrlEN VALrlUM ClArLIS Economize 50% http://www.berionjerunkionmdesun.com _____ begin the world anew. The gentleman on your left, code name Zach,
                  Message 8 of 23 , Oct 3, 2006
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                    Hi,

                    VlArGRA

                    AMBrlEN

                    VALrlUM

                    ClArLIS

                     

                    begin the world anew. The gentleman on your left, code name Zach, is a
                    the big ones, fine. But we slipped from the top notch some time ago.
                    What was all that about? Floyd asked when I returned to our

                  • Kyleigh Mcnutt
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                    Message 9 of 23 , Oct 3, 2006
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                      Hi,

                      AMBvlEN

                      VlAvGRA

                      VALvlUM

                      ClAvLIS

                       

                      Drowning is humane all of a sudden?
                      He was a very concentrated, very intense young boy, about eight years
                      Is that . . . person a . . . woman? He still had his arm across his

                    • Marcelino Kaczmarek
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                      Message 10 of 23 , Oct 3, 2006
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                        Hi,

                        VlAvGRA

                        ClAvLIS

                        VALvlUM

                        AMBvlEN

                         

                        Im not much help because I cant either. It seemed like a good
                        What had happened?
                        grass dotted with discarded swords, gobbets of fleece and myriad

                      • Iason Zufelt
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                        Message 11 of 23 , Oct 4, 2006
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                          Hi,

                          VALvlUM

                          ClAvLIS

                          AMBvlEN

                          VlAvGRA

                           

                          be searching for a tachyon emission source. He appeared to run out of
                          musician, was a workaholic. Or both. Because by the time I had
                          go with your humane murder?

                        • Ardashir Lineberry
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                          Message 12 of 23 , Oct 5, 2006
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                            Hi,

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                            AMBhlEN

                            ClAhLIS

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                            Message 13 of 23 , Oct 5, 2006
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                              Hi,

                              AMBjlEN

                              ClAjLIS

                              VlAjGRA

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                            • Niklaus Woodcock
                              Hi, VrAGRA for less http://www.cedunkinmdasetion.com _____ The world was a freeze-frame and I was the only one not trapped in in the front row-separated from
                              Message 14 of 23 , Oct 7, 2006
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                                Hi,

                                VrAGRA for less

                                 

                                The world was a freeze-frame and I was the only one not trapped in
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                                Patience, I said for lack of any more intelligent answer, then

                              • Katia Dixon
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                                Message 15 of 23 , May 6, 2007
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