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abbeys mom
01-10-2007, 03:09 PM
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. :(

Carmell
01-10-2007, 04:58 PM
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.

abbeys mom
01-11-2007, 10:53 AM
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 :)

Carmell
01-11-2007, 01:05 PM
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.

kerina313
01-13-2007, 09:36 AM
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.

conni60640
01-20-2007, 10:47 PM
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...

abbeys mom
01-21-2007, 05:26 PM
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

conni60640
01-22-2007, 03:16 PM
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... :D 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!