No cyst covering the lesion/malformation?

[PhotogNica]

Hi all!
So at our last u/s (30.5 weeks), we were discussing various things with the Perinatologist and she confirmed that what we had thought she had said was in fact what she believes: Mac has had no covering on his spinal lesion, and this is probably why he doesn't have any more fluid on his brain. (The fluid levels are now completely normal, despite a pretty severe level of Chiari malformation, not quite a III but definitely a severe II.)

I'm just curious if anyone else has experienced this, and what your experiences have been. I know that the chances of him needing a shunt are higher if his body isn't a "closed cycle" where the body is used to cycling the fluid itself, but other than that, I'm pretty clueless as to what exactly is entailed with a non-cyst covered spine etc.

Has anyone had a baby that had no cyst/pocket of fluid for weeks, and then had maybe a small pocket of fluid start at some point later in the pregnancy?

Any more resources to point me to?

Thanks all!

[janjanwhit]

almost all babies with myleo have no covering over the lesion! Most babies will develop hydro after the lesion is closed and require a shunt, about 95%. My Fergus had a thin skin that covered his lesion- like a blister. As he grew the sack filled with fluid and got bigger and bigger. His hydro increased as his size increased in utero. After he was born and his back closed his hydro went away but returned when he was about 5 months old and then he had a vp shunt put in. he is 2 now and has had no problems with his shunt. there are babies that had hydro before they were born that have no shunt and babies that did not have hydro that do. 95% of babies with myleo do end up getting a shunt so chances are that your baby will have one. its a small op and after a few weeks you wont even remember it is there.

[Kari]

(The fluid levels are now completely normal, despite a pretty severe level of Chiari malformation, not quite a III but definitely a severe II.)
Thanks all!

I would expect Dodger to jump in her with some more info, but from your post, it seems like you have been led to belive that the Chiari I, II, III, and IV are the levels of severity, but that is not the case. They are actually different types of Chiari malformations. Type II is associated with spina bifida. You can have extremely severe Chiari II malformation, but that doesn't make it a Type III.

Maybe that isn't what you meant, but I wanted to clarify just in case.

[Kari]

As far as the cyst, Zach did have one in utero, but at some point before delivery because he was born with a gaping hole that had no covering. He did have hydrocephalus, as well as severe Chiari II malformation. All of it is manageable though. He had a few shunt surgeries early on, and two decompressions for the Chiari to help with breathing, swallowing, etc.

[Dodger67]

I would expect Dodger to jump in her with some more info, but from your post, it seems like you have been led to belive that the Chiari I, II, III, and IV are the levels of severity, but that is not the case. They are actually different types of Chiari malformations. Type II is associated with spina bifida. You can have extremely severe Chiari II malformation, but that doesn't make it a Type III.

Maybe that isn't what you meant, but I wanted to clarify just in case.

Jump! :Banane21:

Kari is correct - The "numbers" refer to different types of Chiari, not "grades".

[PhotogNica]

I'm so sorry. I DO know that they're talking about different types of malformation, I don't know why in the world I wrote that. :P He has a severe Type II.

I actually thought it was common for SB babies to have the cyst of fluid behind the spinal malformation, and almost all of the pictures I've seen of babies before surgery have what would be termed the cyst/covering (not skin, probably membrane? what do they call it?) since you don't see the spine through the back.

I'm not so much worried about the shunt, etc, as I was curious as to how those who had babies with "gaping holes" (who wants to say that about their child? eek!) and how that affected the hydro/etc.

I know my posts are pretty disjointed. I'm on my sixth month of bedrest and the exhaustion from my severe hyperemesis gravidarum is compounding the normal third-tri fatigue, and my brain (which I like to think is pretty normally lucid) seems to be suffering the most. lol

[janjanwhit]

fergus had a thin covering like a blister over his lesion and it burst on delivery , which is very common. he had a lot of skin hanging off his back over quite a large area but the hole in his spine was only very small- one vertebrate. he had hydro before birth and had a shunt installed at 5 months old.

[Jill]

We were never able to see a sac/covering on Kingsley's lesion while in utero, with either an u/s or MRI. Not sure when it ruptured, if that's what happens? His lesion was pretty small now that I've seen so many more. They always had trouble finding it with the u/s.

Anyway, didn't have hydro in utero either. Totally normal at diagnosis (21 weeks) and grew a bit, but was only borderline at 10-11cm at birth (I had an u/s that morning!) but it developed once his back was closed. He got his shunt when he was 3 days old.

He has/had Chiari, but no one was concerned. He didn't have any problems for the first 6 months, then it sort of caused some problems out of nowhere. Rare ones though. :)

[Kari]

I don't think that Zach's open, uncovered lesion in his back had anything to do with his hydrocephalus. He had hydro at 17 weeks gestation, when we could see the sac, by the time he was born, the sac was gone, and he still had hydro. They did wait until he was 10 days old to put the shunt in though. Having enlarged ventricles is okay, as long as they're stable. Zach's were stable for 10 days. As soon as they started getting larger, they decided it was time for the shunt. He had head ultrasounds every other day or so to check on them. I also noticed behavioral changes right before they decided on the shunt. At about day 7, it started getting harder and harder to wake him up to eat. He had been such a good eater, and suddenly wanted to sleep through everything. As soon as the shunt was in, he was STARVING all the time, and was awake so much more!!

[Kari]

those who had babies with "gaping holes" (who wants to say that about their child? eek!)


Well, I can say I never "wanted" to say that about my child, but it is true, and I'm not one to sugar coat things. Regardless of how it looked when he was born, he is here, and a happy, intelligent, fun loving almost 4 year old.

[Dodger67]

Always bear in mind that ultrasound is not very good at showing fine detail.
Thin membranes may go unnoticed unless there is a clear difference in the density of the substances on either side of such membranes.

:fyi: Ultrasound works by showing variations in density. Substances of different densities transmit sound at different velocities. Transitions (surfaces) between different densities scatter, reflect or refract some of the sound energy. It is these changes in the sound beam that are detected and processed into an image.