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Thread: should i be concerned?

  1. #1
    Join Date
    Jan 2007
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    canada
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    9

    should i be concerned?

    my abbey dose not seem to have any other problems except her spine. are there things that i should be looking for? she has had ultrasounds,MRIs,EKGs,and plenty of X-rays.there might be a problem with her hips but the doctor has mentioned no other concerns.will that change in the future, she is two now.or should we be able to see all the problems now?
    i had no idea the other kinds of issues that went along with conginital scolosis.

  2. #2
    Join Date
    Oct 2003
    Location
    Utah
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    1,010
    Hi Abbey's mom,

    Is your name Sarah? I've seen a few new mom's/families post and wondered if I've seen a post from you on another list.

    It sounds like you have a good team of docs looking out for Abbey. I'm happy to hear that she's had these various tests done, and hopefully it means she *just* has congenital scoliosis. in 25% of congenital scoliosis cases, there are some kind of renal (kidney) or cardiac problems. If they've checked her kidneys and heart thoroughly, she is probably okay.

    In another 25% of the cases, there are spinal cord problems that can range from insignificant to severe. Do you know if the MRIs have been seen by a pediatric neurosurgeon, and not just a radiologist? If so, again, you're probably in good shape. This doesn't mean something can't pop up later in life, but the chances are good she won't have other problems.

    Does she have any problems with her muscles or nerves? Things like being hyper-mobile? or too stiff? These kinds of issues can have a direct affect on scoliosis and the progression of scoliosis. If she's overall healthy and strong, she's on the right track.
    Carmell
    mom to Kara, idiopathic scoliosis, Blake 19, GERD and Braydon 14, VACTERL, GERD, DGE, VEPTR #137, thoracic insufficiency, rib anomalies, congenital scoliosis, missing coccyx, fatty filum/TC, anal stenosis, horseshoe kidney, dbl ureter in left kidney, ureterocele, kidney reflux, neurogenic bladder, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion, clubfoot with 8 toes, pes cavus, single umblilical artery, etc. http://carmellb-ivil.tripod.com/myfamily/

  3. #3
    Join Date
    Jan 2007
    Location
    canada
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    hi carmell,

    yes my name is sarah and yes i am on another site. for two years i have looked for anything on conginital scoliosis and had no luck,then i one day i find aleast two sites.i am still in shock about it. what is hyper-mobile? the word to describe abbey is hyper but that may be different.haha. i dont belive a nuerosurgon has looked at her MRI. should they? thankyou for your response. its nice

  4. #4
    Join Date
    Oct 2003
    Location
    Utah
    Posts
    1,010
    Hi Sarah,

    Hyper-mobile means that her joints are loose and bend easily. Often times they bend too far. Can she bend her wrist back a lot? Does she have flat feet? Does she dislocate joints? Things like that.

    And yes, I believe a pediatric neurosurgeon should look at the MRI films.
    Carmell
    mom to Kara, idiopathic scoliosis, Blake 19, GERD and Braydon 14, VACTERL, GERD, DGE, VEPTR #137, thoracic insufficiency, rib anomalies, congenital scoliosis, missing coccyx, fatty filum/TC, anal stenosis, horseshoe kidney, dbl ureter in left kidney, ureterocele, kidney reflux, neurogenic bladder, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion, clubfoot with 8 toes, pes cavus, single umblilical artery, etc. http://carmellb-ivil.tripod.com/myfamily/

  5. #5
    Join Date
    Jul 2006
    Location
    Pennsylvania
    Posts
    21
    I agree with Carmell - my daughter had an MRI done to check on the spinal cord - and I would have a few people read it just to make sure.

    However, if she's moving around alright I would assume everything is probably ok for the moment.
    -------------------------------------
    Erin - Mother to Emily who was born with:

    1) Pulumnary Artresia/Tetralogy of Fallot
    - 2 conduit replacement surgeries
    - 2 stents inserted in conduit

    2) Congenital Scoliosis (9 incomplete vertebrae - 2 hemi)

    3) Cystic Kidneys
    - Right one non-functioning
    - Left one growing and working well

  6. #6
    Join Date
    Aug 2005
    Location
    S. Jersey
    Posts
    16
    Quote Originally Posted by abbeys mom
    i dont belive a nuerosurgon has looked at her MRI. should they? thankyou for your response. its nice
    Hi Sarah. I would want a neurosurgeon (ped) to look at the films also, they are better at looking for subtle things a radiologist might miss, since spinal cords are their specialty instead of having to look at everything like the radiologist...

    What kind of hip problems does Abbey have? Billy had a pelvic tilt to his hips due to partial sacral agenesis...
    Connie - Mom to Billy 5
    (CRS/VACTERLS incl. tethered cord, IA, single kidney, hemisacrum, levoscoliosis with hemivertebrae (fusion T11 to S2/hips 8/06), extra left rib, hypospadius, hypoplastic left leg w/clubfoot and 4.5cm length discrepancy,GI issues) conni60640@aol.com, http://members.tripod.com/conni60640-ivil/
    TC support group http://health.groups.yahoo.com/group/LMC-TCS/
    Congenital scoliosis support group - http://health.groups.yahoo.com/group...liosisSupport/

  7. #7
    Join Date
    Jan 2007
    Location
    canada
    Posts
    9
    hi connie,
    i am not to sure what the concern with her hips were, he told us he had to watch and see because her young age could make it diffucult to tell for sure. i dont quite feel comfortable posting on these sites but is good to read all the other letters,but abbey has no other problems and after reading all the other things that could of gone wrong it is alittle scary.how do you get through it?thank you for the e-mail again
    sarah

  8. #8
    Join Date
    Aug 2005
    Location
    S. Jersey
    Posts
    16

    Smile

    Quote Originally Posted by abbeys mom
    hi connie,
    i am not to sure what the concern with her hips were, he told us he had to watch and see because her young age could make it diffucult to tell for sure. i dont quite feel comfortable posting on these sites but is good to read all the other letters,but abbey has no other problems and after reading all the other things that could of gone wrong it is alittle scary.how do you get through it?thank you for the e-mail again
    sarah
    You get through it one day at a time! You focus on all that is right, and enjoy the lovely baby she is... Some people get overwhelmed knowing what CAN happen, some people NEED to know all the possibilities. Just gotta remember that what CAN happen doesn't mean it WILL... but you do want to get the essentials checked out to make sure nothing sneaks up and bites you, like spinal cord issues.

    Once you have the ped neurosurgeon look at that and give you an all clear, then you can breathe sigh of relief and then begin the watch and wait period to see what her spine does. It may do nothing! Just remember you always have us to fall back on and to ask questions of, even if you need to go into "lurker" mode for a while to process all of this!
    Connie - Mom to Billy 5
    (CRS/VACTERLS incl. tethered cord, IA, single kidney, hemisacrum, levoscoliosis with hemivertebrae (fusion T11 to S2/hips 8/06), extra left rib, hypospadius, hypoplastic left leg w/clubfoot and 4.5cm length discrepancy,GI issues) conni60640@aol.com, http://members.tripod.com/conni60640-ivil/
    TC support group http://health.groups.yahoo.com/group/LMC-TCS/
    Congenital scoliosis support group - http://health.groups.yahoo.com/group...liosisSupport/

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