Scoliosis/Spina Bifida

[jen111772]

My 11 year old son was referred to the dr's after a routine school physical, for scoliosis.  At the Dr's he had x Rays in which they told me he has spina bifida occulta and scoliosis.  They then sent me a letter with the xray techs final report.   They say he has a 10 degree levoscoliosis with the apex at L1, 10 degree compensatory dextroscoliosis of the mid- apex at t7-t8, and spina bifida occulta at L5.  What the heck does all this mean, and why would it take them 11 years to find something like spina bifida?

[Theresa7544]

HI my son has Spina Bifida (Myelomeningocele/Lipomyelomeningocele). Ok I know that is a really big word lol! However all it is means is the worst form of spina bifida including and open spinal column with a tethered cord with also a tumor on the spine. With all that said I wanted to tell you that  spina bifida occulta ( which stands for hidden and is the least form) can cause back pain, neck pain, and head ache. I want you know that you are lucky to find out this information now so that you can know what to look for. I wanted to also let you know that spina bifida is a genetic disorder. There is someone in your family or your husbands family that has it. We did not know of anyone in either of our families that had had it. We started calling and asking!!! Come to find out my husband is the carrier. His cousin on his mother's side has it and never told anyone because the doctor said "it was no big deal". I am here to tell you that it is a big deal. If you have other children as well as your son will need to have the wives or girlfriends take folic acid. they need to take up to 400-1000 mgs. It can help prevent the spina bifida. It has nothing to do with taking your prenatal. Spina Bifida sets in with in  12 days from conception. They as well as your self need to take folic acid for 6 months before they decide to have children. They can prevent them having to deal with this. Although scary SBO isn't the worst it is very scary with it being just thrown on you. It will depend on how much folic acid the mother has in her body to how bad the spina bifida. I must not had any :) I want you to know how blessed you are that your son is doing fine. My son Eli even though has the worst form we are blessed as well. God perfectly placed the tumor over the opening in his back and for that reason alone he is not affected by it. He did have a 8+ hour surgery when he was 4 months old. It was very scary. Spina Bifida is no joke on any level and I think that it is great that you are reaching out for information instead of just sitting by and forgetting about it. Your son is very lucky to have a mommy like you! Good luck!  

[ShakinThingzUp]

Jen,
I am so sorry that your son is dealing with such tough issues at 11.

I am 34 years old.  I had unexplained back pain at age 14 after high level of activity in PE class..... the doctor found Spina Bifida Occulta, and told me then (about 1987) that nothing could be done about it.

In 2002, when I went to a doctor due to severe pain, they pointedly told me that my pain had nothing to do with my spina bifida occulta, that 20+ % of the population has this malformation, and that I should "stop worrying about spina bifida occulta".... they told me I had a bulging disc, and that caused my pain........ one doctor even said to me, literally "I have a hard time believing that this kind of back pain began at age 14."  Of course, it just so happens that my bulging disc was at the same area of my SBO.

Today, at age 34, I have severe pain, numbness, etc. and am undergoing many tests to find the cause...... personally, my belief is that all this could have been prevented if they took me seriously the last time.

I think that too many doctors do not take SBO seriously enough.

I do however, understand how it could not be detected until there is some reason to look for it....... there are often no outward signs of SBO.

God Bless!
Amy

[jen111772]

Thank you for the info, he is doing fine, just a little nervous because of the fact that the doctor simply told us these things, yet never explained any of it, I think they thought I had known that he had this previously.  The doc simply said "yep he has scoliosis due to the spina bifida" and I replied due to the WHAT?  He has never had any imaging done of his back previously, and my main concern is, will his spine continue to curve from this slight S pattern, to a more pronounced S-and why is it doing that? What is keeping it from growing in an upward pattern? Also, why wouldn't my obstetrician have found this when I had the alphafetaprotein test and/or the ultrasound, would it have not been detectable? And, why would they do nothing about the curvature, if at 11 years old he is already 10 degrees to the left, then 10 to the right, with a noticeable (lump) on the front side of his ribcage?  Thanks for all your info.
Jen

[JainMD]

Hi,
How is your son doing?
Spina bifida occulta is an incomplete closure of the laminar arches of the spine. Occurs at birth but may not be detected until later.
It may occur at any level of the spine or at multiple levels, although it is most common at the caudal aspect of the spine.
What symptoms does your child have?
Spina bifida occulta is a skin-covered defect in the lower lumbar spine with no neurologic deficit, associated with slightly increased risk of spondylolisthesis.
Scoliosis is a 3D curvature of the spine, best appreciated on an AP radiograph and physical examination. It is defined as a curve >10°.
As spina bifida would have been non-symptomatic hence it has taken long time for diagnosis.
Was any imaging done for his spine any time before?
Keep me posted.
Bye.