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  1. Thread: spinecor

    by emarismom
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    Yes it has been a long haul! At 5 years old with...

    Yes it has been a long haul! At 5 years old with a 30 degree curve, it did not look good, that is for sure!!

    Maria, decompression surgeries do tend to stabilize a Chiari related curve, and in...
  2. Thread: spinecor

    by emarismom
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    1,777,444

    Update on Emily

    It has been quite awhile since I have posted here. Emily is now 15. She is a Riser 5 and has been for over a year. She was initially diagnosed at 5 years old with a 30 curve, as well as Chiari and...
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    MJB, I will also keep you in my prayers. It...

    MJB,

    I will also keep you in my prayers. It is great that you are planning a fun weekend for Halle before the surgery, I'm sure keeping her busy will help her relax.

    The day before Emily's...
  4. My daughter,12, has chiari,syrinx, and scoliosis....

    My daughter,12, has chiari,syrinx, and scoliosis. She was diagnosed 7 years ago and immediately had decompression surgery (brain decompression). No scoli surgery yet, actually seems like we may...
  5. Thread: spinecor

    by emarismom
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    1,777,444

    Hi all, Just wanted to comment for those of...

    Hi all,

    Just wanted to comment for those of you who have younger kids who are waiting fot the "dreaded" growth spurt. Emily has been in the Spinecor for 3 years+ now. On her last xray (8/2010)...
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    I am very sorry for your son's diagnosis. My...

    I am very sorry for your son's diagnosis. My daughter was also diagnosed early, at age 5. Her scoliosis was not idiopathic as you can see in my signature. I would make sure that your son is given...
  7. Replies
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    70,912

    I would look for another cause for the pain and...

    I would look for another cause for the pain and ask for an MRI to be done of the full spine. There maybe something else that is causing the headaches. Scoliosis does not cause headaches.
  8. Thread: spinecor

    by emarismom
    Replies
    3,919
    Views
    1,777,444

    Over the last 6 months she has been growing very...

    Over the last 6 months she has been growing very quickly. From late March until mid May she grew an inch and a half! I was terrified as to what curve would do. I haven't measured her for a while,...
  9. Thread: spinecor

    by emarismom
    Replies
    3,919
    Views
    1,777,444

    Hi all, Just an update. Emily continues to...

    Hi all,

    Just an update. Emily continues to wear the Spinecor. Currently she is 31 degrees out of brace. She is almost 12 and has grown quite a bit, but as yet is pre-menarcal. Doctor says...
  10. I have gone back and forth with these issues for...

    I have gone back and forth with these issues for years. At this point in time there is not a RIGHT answer or a treatment that is best. Since there are no long term studies for JIS progression with...
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    Have you had an MRI? If not, ask your parents to...

    Have you had an MRI? If not, ask your parents to talk to your orthopedic to see if you can have one done.
  12. Thread: spinecor

    by emarismom
    Replies
    3,919
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    1,777,444

    Emily's in brace rays have ranged from about 16...

    Emily's in brace rays have ranged from about 16 to 21 over the years. The most recent one being Nov. 09 at 17 degrees. I have been alternating in and out of brace xrays every 5 to 6 months.

    We...
  13. Thread: spinecor

    by emarismom
    Replies
    3,919
    Views
    1,777,444

    Just an update- Emily now 11 1/2 had an oob...

    Just an update-

    Emily now 11 1/2 had an oob yesterday. She is currnetly at 29 degrees, so she is inching upwards. Over the three years in Spinecor she has increased a total of 8 degrees. ...
  14. Thread: spinecor

    by emarismom
    Replies
    3,919
    Views
    1,777,444

    MJB, First of all Congratulations on the new...

    MJB,

    First of all Congratulations on the new baby, they are such blessings.

    I am so sorry to read that your daughter's curve has progressed, most, if not all of us here understand how you are...
  15. Thread: spinecor

    by emarismom
    Replies
    3,919
    Views
    1,777,444

    MJB, I am so sorry to hear that your...

    MJB,

    I am so sorry to hear that your daughter's curve is progressing like this. I am with Maria on this one. Go and get an out of brace xray. This is the one aspect of the Spinecor that I...
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    That is wonderful news! You all must be so...

    That is wonderful news! You all must be so relieved!
  17. Thread: spinecor

    by emarismom
    Replies
    3,919
    Views
    1,777,444

    Well we had an xray done yesterday. Emily's...

    Well we had an xray done yesterday. Emily's curve is 17 degrees in brace. :) I'm okay with that considering her age and amount of growth the past few months. Last xray (6/09) she was 27 degrees out...
  18. Thread: Who Decides?

    by emarismom
    Replies
    119
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    64,422

    bas2101, Good luck with the nuerologist. ...

    bas2101,

    Good luck with the nuerologist. There is a known connection between syrinx and scoliosis. The exact mechanisms of this connection are unknown at this time. When a syrinx is present-...
  19. Thread: Who Decides?

    by emarismom
    Replies
    119
    Views
    64,422

    BTW, I would definitely be looking more into the...

    BTW, I would definitely be looking more into the Syrinx. Have the MRI reviewed by another NS or two or even three. If it has been more than 6 months to a year since the previous, request another,...
  20. Thread: Who Decides?

    by emarismom
    Replies
    119
    Views
    64,422

    bas2101, I just want to say that the way I...

    bas2101,

    I just want to say that the way I deal with the question of who to see and who knows best how to treat my daugther is that I see several practitioners. Listen to all they have to...
  21. Thread: spinecor

    by emarismom
    Replies
    3,919
    Views
    1,777,444

    I have been on this road for 5 years now...

    I have been on this road for 5 years now Christine, and there are moments when I am just so tired from it all and other moments where I am so grateful, because it really could be much worse! The...
  22. Thread: spinecor

    by emarismom
    Replies
    3,919
    Views
    1,777,444

    Christine, 11 degrees out of brace is a very...

    Christine,

    11 degrees out of brace is a very :) number !! As moms we always want better though, so I do understand.

    As for airfare, it is cheaper to fly into the US, then rent a car and...
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    I'm going to second the thought that an MRI is...

    I'm going to second the thought that an MRI is called for, as well as a second or third opinion. The pain and tingling may be symptoms of other conditions, such as Chiari or a Syrinx. These also...
  24. Thread: spinecor

    by emarismom
    Replies
    3,919
    Views
    1,777,444

    Laura, Well it seems that things are going...

    Laura,

    Well it seems that things are going well enough, though not as good as we would all like to see:rolleyes:. So glad to hear about the cervical spine not really being an issue as I know...
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    Gayle, I have been dealing with JIS for...

    Gayle,

    I have been dealing with JIS for almost 5 years and have never heard that "More than 90% of cases do NOT turn into idiopathic
    scoliosis." as Dr. Hey says. In fact, like you, I have...
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