Borderline bilateral ventriculomegaly at 22w - support thread!

[phoebewyatt]

I did find out the sex and it is a boy as you said must be more common in boys, ive got a 3 1/2 year old daughter and my pregnancy and labour were abz fine no worrys at all. and so far my pregnancy had gone well apart from the 11mm thing that has just made me worry and it could be for no reason. but i am glad they at being carefull as i would hate to think they didnt make sure all is well.
its funny how i hardly felt my baby move and since the scan he hasnt stopped

 

[janey1975]

Congratulations on expecting a baby boy! I am sure that things are going to work out well for you. I was told that larger vents are much more common in boys. I too had no other issues when I was pg and no other issues found on the scan. As that is the same for you I am sure all will be fine at the next scan. They are just being very cautious these days.

I am so pleased your baby is moving lots now. It was similar with me. I remember being worried before the scan that I had not felt much movement but then like you he seemed to become disco bubba after the scan!

Best of luck for when you see the consultant x

 

[Steph32]

Does anyone here have an experience with the "third ventricle" being enlarged?? I had a scan at 30 weeks and both the left and right lateral ventricles were within normal range but the 3rd appeared larger than normal. I don't have the exact measurement as I am waiting for the report. Can't seem to find any info on the 3rd ventricle... or even what the range of normal width is...

 

[Tulip]

Hi Steph I'm sorry youre going through this From what I can Google, any measurement above 3.5mm will prompt further investigation. I'm going away for the weekend but will try and do a bit more digging around as soon as I can xx

 

[Steph32]

Thanks. I couldn't find much info either, and I'm confused about the measurements.. length, width etc... once I get my hands on my report I'll know more. I should be getting it by Monday.

I haven't really heard of the 3rd ventricle being enlarged without the left and right vents also enlarged... from what I found it is rare for that to be the case...

Also my son's head was measuring 4 weeks ahead, which I don't really put much weight into because I know those measurements can be inaccurate based on the baby's position, and/or everything might catch up later on. But if his large head circumference is due to something going on with his 3rd ventricle, that's where it concerns me.

 

[Mrs C P]

Hi i had my 20 week scan yesterday at 21weeks+3days, and have been told that i need to see a fetal speicalist because something in the brain is measuring at 11mm on both sides which i have been told is borderline but its hard not to worry about this as i no nothing about it . i now have to wait untill 24th april to see the specialist because she is on holiday untill then !! surely if the specialist is on holiday they should have cover?? but i will have to wait. Im just hoping like the mojority of you ladies it will go down and all will be fine. they did tell me my baby is on the larger side so could just be because of that. fingers crossed its nothing to worry about. thanks to everyone who have posted so far it makes me think more positive about this situation and that the lady could of just miss-measured because of such an active baby. fingers crosses

Hello

Hope you are ok, I had to wait a week because my consultant was on hols too, no cover it seems. Do you remember the sonographer repeatedly taking what looked like the same measurement? Did you notice all the varing measurements? When she did mine they ranged from 9.2 to 10.2 and I was thinking to myself "why does she keep measuring the same place?" it could be something so simple like my case where baby's head was tilted in such a way that the fluid didn't drain properly resulting in the larger measurement.

Sending hugs

 

[Steph32]

Hi Steph I'm sorry youre going through this From what I can Google, any measurement above 3.5mm will prompt further investigation. I'm going away for the weekend but will try and do a bit more digging around as soon as I can xx

Well I got the report and it said the 3rd is measuring 9.4mm... if it should be no more than 3.5mm (which is similar to what I found) than that is a huge measurement. The tech wouldn't tell me anything or give me a range of normal. He said he couldn't find any info about it! This is so frustrating, and I left a message with my doctor but haven't heard back yet.

 

[Tulip]

I can understand that is hugely scary On the plus side, you are 31 weeks so not long to go til he can be treated. They may even get him out early if they're really concerned in order to put a shunt in.

I hope you manage to see your doctor soon

 

[samjc1531c]

steph32, how long have they said until a doctor gets back in touch with you to go through it all with you and discuss everything, i would tell them the stress is not good for you or baby having to wait for explanations, i was lucky the fetal specialist i was under spent half hr answering questions scanned me and then went through everything straight away with us (i have the fantastic consultants from one born every minute documentary )
Its such a worrying time and aswell as worrying about the obvious you have soooo many hormones whizzing about your body.
I know this is sooo much easier than done but try to remain positive and focus on finding answers as soon as possible.xxxxx

 

[Steph32]

Well, the tech faxed the report to my doctor because he couldn't tell me much, he just "flagged" it for the doctor to see and said that he'll do what he wants with that info. So I left a message yesterday with the doctor to see if they had gotten the fax because I hadn't heard from them yet. Left a message, and the assistant called me back this morning to say that the doctor will call me today. They are a busy office, but assuming they saw the report already and weren't so quick to call me back, maybe they thought it wasn't super urgent... which is a good sign... I hope.

 

[phoebewyatt]

Tuesday seems forever away, i just hope when i go to see the fetal specialist im told asap if there is anything to worry about and i hope they explain in the simplist way so i understand everything.

 

[Tulip]

Take as many notes as you can and if you don't understand, they MUST explain better. Sending strength xxx

 

[janey1975]

Tulip's right, it is their job to make sure you understand. Think about what exactly you want to know. The question that helped me when I had the initial scan result was asking 'how likely is it that this is nothing to worry about, is it above 90%' and the consultant replied 'yes, definitely above 90%, it's most likely to be a variant of normal'. So they were simply saying that although the measurement was a little high, it was normal for my baby. After all, we're all different.

So put things in the language you will understand and ask them that question. I think that's the best thing you can do. I will be thinking of you on Tuesday. Please do update and let us know what they say - thanks. Sending you positive vibes x

 

[janey1975]

Well, the tech faxed the report to my doctor because he couldn't tell me much, he just "flagged" it for the doctor to see and said that he'll do what he wants with that info. So I left a message yesterday with the doctor to see if they had gotten the fax because I hadn't heard from them yet. Left a message, and the assistant called me back this morning to say that the doctor will call me today. They are a busy office, but assuming they saw the report already and weren't so quick to call me back, maybe they thought it wasn't super urgent... which is a good sign... I hope.

Have you heard anything Steph? Been thinking of you x

 

[phoebewyatt]

went for my scan today with the fetal specialist, not looking good, the fluid filled areas have increased from 11mm to 13mm and has gone from borderline to mild. i have to go to newcastle next tuesday and have another scan like today and maybe an MRI scan in the 'doughnut machine' so they can have a better look at the brain and check everything in the brain. there is no obvious signs of problems in babys face organs bones ect but the more the fluid areas increase the more likely there is to be a problem with my baby. trying to remember eveything they said to me, have to see the fetal specialist again at my normal hospital in 4 weeks so she can keep an eye on baby. i have been offered the down's syndrome test again which i refused the first time. i have refused again as it can cause miscarrage and my baby could be perfectly healthy and even if he wasnt i would still keep him. i am sooo worried now as i was hoping in would decrease not increase and im worried next week it could be even bigger. this is all i can remember at the minute my head is a mess with all the info going around

 

[Tulip]

I'm so sorry to hear that they've grown. Newcastle will be your tertiary referral centre, so they'll have the specialists to work out exactly what's going on and what's causing the ventriculomegaly.

I'm hoping with all my heart that the vents stop growing. Come on, little man xxxxx

 

[Steph32]

Well, the tech faxed the report to my doctor because he couldn't tell me much, he just "flagged" it for the doctor to see and said that he'll do what he wants with that info. So I left a message yesterday with the doctor to see if they had gotten the fax because I hadn't heard from them yet. Left a message, and the assistant called me back this morning to say that the doctor will call me today. They are a busy office, but assuming they saw the report already and weren't so quick to call me back, maybe they thought it wasn't super urgent... which is a good sign... I hope.

Have you heard anything Steph? Been thinking of you x

Thanks for thinking of me! Well, I don't have all the information I want about this... no one seems to know much, which could be a good sign because how would they then know what's normal re: the 3rd ventricle, right? Although it looks "prominent," it is very likely that it is just a "variant of normal"... which is a term they use a lot it seems! So I'm going to try not to worry about it. The fact that the lateral vents are normal, they really don't know how to even handle the situation anyway. It's not causing any problem and the other brain structures aren't squished. So I am just going to trust that it is okay. I might go for another growth scan, just to check in with the head growth since it was measuring 4 weeks ahead before.

 

[phoebewyatt]

up to newcastle tomorrow hopefully i have a scan and MRI so idont have to tra

 

[phoebewyatt]

Up to Newcastle tomorrow hopefully i have the scan and MRI, so i dont have to travel up there again. Fingers crossed the fluid has not increased anymore :-/

 

[janey1975]

Well, the tech faxed the report to my doctor because he couldn't tell me much, he just "flagged" it for the doctor to see and said that he'll do what he wants with that info. So I left a message yesterday with the doctor to see if they had gotten the fax because I hadn't heard from them yet. Left a message, and the assistant called me back this morning to say that the doctor will call me today. They are a busy office, but assuming they saw the report already and weren't so quick to call me back, maybe they thought it wasn't super urgent... which is a good sign... I hope.

Have you heard anything Steph? Been thinking of you x

Thanks for thinking of me! Well, I don't have all the information I want about this... no one seems to know much, which could be a good sign because how would they then know what's normal re: the 3rd ventricle, right? Although it looks "prominent," it is very likely that it is just a "variant of normal"... which is a term they use a lot it seems! So I'm going to try not to worry about it. The fact that the lateral vents are normal, they really don't know how to even handle the situation anyway. It's not causing any problem and the other brain structures aren't squished. So I am just going to trust that it is okay. I might go for another growth scan, just to check in with the head growth since it was measuring 4 weeks ahead before.

Sorry for the delay in responding and thanks for the update.

I must admit Steph I had not heard anything about the 3rd ventricle even with all my googling last year about ventricles in the brain. The fact that they are not worried about it is a really good sign. Yes, we were told that our little boy's ventricles were a 'variant of normal'. The other excellent indication is that they have not found any other issues and I can honestly say that in my experience they look really hard for any other signs so you can rest assured your baby has had a full inspection! I would have another growth scan too just for reassurance as it won't do any harm. Sometimes the head grows quicker and then the body catches up! I think Tulip or someone mentioned that sometimes bigger vents can be caused by a temp enlargement whilst things are growing at different rates and then the fluid drains and they return to normal.

Anyway, it all sounds like excellent news to me Steph. Do keep us updated x