Meningocele?

[Gill15]

Hello! I'm a bit confused and just wondered if anyone else had experienced this. When I went for my second ultrasound after spina bifida was diagnosed our consultant made a very quick comment about the cyst having a thin layer of skin covering it, but didn't go into any details. At the time we never thought anything more about it and the diagnosis written on my medical notes is Myelomenigocele (this was written before my second ultrasound). However, yesterday I had a meeting with the Scottish Spina Bifida Association and when they were looking at the scan photos said that it looked like the cyst was enclosed and asked what I had been told about this. They suggested I take it up with my consultant as it could make a difference to the prognosis for the baby - I will do this but just wondered what this could mean?

My husband and I are very much if we go with the worst case scenario anything better will be a bonus when she is born and trying not to get our hopes up that this is too significant, but I'd be lying if I said it hadn't caught my interest?

Thanks
Gill x

[Gill15]

Just been looking into this more online and I think my original diagnosis is correct - our MRI showed nerve ends coming out of the opening in the spine into the sac which doesn't seem to be the case with meningocele?? Her ventricles also measure 12mm and she has very mild chiari malformation so all this combined it does sound more lile myelomeningocele....I think!?

[LisaJoy]

It sounds like myelomeningocele to me. If there's a good skin covering though, it should help reduce nerve damage until she's born and can have the surgery. With her ventricles barely above the normal range, it sounds to me like she's looking pretty good! Hold on to hope.

[mommaof2]

Gill,

I get confused about the exact same thing. At our ultrasound this past week, we were told our daughter now has no hydrocephalus, and they could see the thoracic/lumbar spine which looked ok, but they couldn't see a sac on the sacral area, only splayed vertebrae. Now I'm more confused then even. They didn't call it a myelomeningocele this time either, just an open neural tube defect. I'm not exactly sure how they call it that if they can't see an opening or sac. All this stuff really is complex and confusing at times, plus it doesn't help being in waiting mode of pregnancy.

[Dodger67]

Its the dreaded "Wait and See". Sometimes I think pre-natal diagnosis is worse than just being suprised at birth.

[Bigwilli]

Hi there and welcome to the board. I had the same question when my wife was pregnant and I although I am not a qualified doctor I will share what I learned. It seems that an open cyst with no membrane exposes the nerves to the amniotic fluid which are caustic and damage the nerves over time. With a closed cyst membrane the theory is the amniotic fluid does not reach the nerve endings which hopefully provide less damage.

The in-utero surgeries that MOMS study is currently doing is an attempt to close open cysts to minimize damge from amniotic fluid. The results of this study are still inconclusive. I hope this helps and best to you!