confused and at wits end

[georgie]

Hi guys i am new to this what does it mean sb in s3, s4, s5, myelomeningele, chiari 11 and an mri that shows smallest possible serabellum on monday and yesterday a normal sized serabellum? Our unborn grand daughter is 22 weeks. doctors teling us to think seriously about termination we will not be
I am not making sense but all of this is really hard to digest. Any answers or imformation would be great. Any experiences would be most apprecited. God bless all

[misty]

Hi Georgie!
I'm Misty, L5-S1 myelomeningocele,chiari II. Your granchild's sb is pretty low as far as sb goes. Mine is slightly higher, and I'm very functional. Please keep in mind for the next few months that doctors are VERY pessimistic about sb. The ob/gyns and ultrasound techs don't see much of the baby after birth, so they don't experience what awesome people we are! Sb in s3, s4, and s5 means that the lesion is in this area on the spine. It's really low, the lowest part, and low is great! Myelomeningocele is open spina bifida, which means that there isn't much covering the spine to protect it from the elements. There may be a sac, but there isn't the normal skin covering that you have. Chiari II is hardly ever symptomatic. The most common problem, I think, is trouble swallowing, and a pretty awesome gag reflex. I have both of those with my chiari, and no other issues. As far as the cerebellum goes, I think this is where we have to take what the docs say with a grain of salt. Go with normal until they are absolutely certain its too small. They will tell you things are horrible because they have to. They hae to cover their butts so you can't come back later and say "You didn't tell us this could happen!!!" Keep coming back, and ask lots of questions. We'll support you!

[Ziggy]

Hi Georgie. Pregnancy is the WORST part of a spina bifida diagnosis because nobody actually knows anything for sure!

Like Misty said, that's a "good" location for an SB lesion to be, if there is such a thing. S stands for sacrum, which is down pretty much at your tailbone. As far as the cerebellum, the measurements are really unreliable during pregnancy. Even on MRI, it's virtually impossible to get an unborn baby to hold perfectly still to get accurate measurements.

Good for you not considering termination. It wasn't an option for us, and although the OB was required by state law to tell us that it wasn't too late, we said "no thank you," and he said "Good, because you'd have been idiots to destroy a perfectly good life."

[LisaJoy]

Sacral level spina bifida generally has a very good prognosis. The others have given you good information. The cerebellum is hard to visualize, especially with Chiari II. There are at least a few parents on this forum who were told with great certainty that their child was ANENCEAPHALIC -- meaning part or all of the brain was entirely absent. And they were NOT!

[jellolegs23]

I just want to reaffirm what everyone else has said. The level of SB your grandchild has is very low and that is great news! The level of SB your grandchild has is even lower than mine at L4-L5 and I am doing very well!

Like everyone else said about Chiari Malformation II, it is hard to get an accurate idea of how that might play out for your grandchild, but most people with the malformation are not even symptomatic. It's one of those things you worry about IF and when it becomes a problem.

[Jill]

If you want a visual for how low the lesion is - my son had his opening at S1/S2 and when he's wearing a diaper/shorts you can't see the scar. Now, if he ever chooses to be one of those boys who wears his pants falling off his bum, it may be out there ;) but otherwise, it's his secret even topless.

My son's head measurements were all over the map, especially near the end of my pregnancy. Scary as all get out, but ended up being a-ok once he was born. he does have a shunt but so far so good. Your granddaughter is one lucky little lady to have you! :)

[Ziggy]

Yeah, Micah's lesion is L4-S2 and his scar is completely covered by his diaper, should be inside his pants too. Something to ask is if they will try to close it horizontally or if they always do vertically. It's purely cosmetic but it was nice to know it would be hidden.