Ventriculomegaly

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This topic contains 2,811 replies, has 407 voices, and was last updated by  raminta 5 months, 3 weeks ago.

Viewing 15 posts - 2,791 through 2,805 (of 2,812 total)
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  • #6992127

    my4thbaby
    Member

    Hi everyone. Sorry, I’ve not checked in here for a while. Hope you and your babas are all well. Hope (DX inutero with vm, and cerebellar hypoplasia), now has severe epilepsy, and is currently being tested for a rare metabolic disorder. If she (and I think she probably does) has one of these, it kinda explains a lot…I just wondered if there was anyone else out there who has a lil one dx with one of these disorders (apparently the brain anomolies are caused by the disorders).
    Much love
    Xxx
    ps Hope’s has a blog at http://www.honkeyplonk.blogspot.com

    #6992383

    MarieG
    Member

    My mum used to tell me that when your back is against the wall you should spend time preparing for when you have your opportunity to move. I use this quite a lot. For me this mean’t preparing for when the baby came and keeping myself busy and motivated. I tried very hard to tell myself that if my baby had an issue upon birth then he was going to need me 100% and I needed to be there for him 100%. With that in mind I tried to take very good care of myself – health, nutrition, getting a lot of rest and relaxation. Be good to yourself, I know it’s hard, but you need to be in a fit state if you child has an issue when born. Chances are they are going to be fine, as are many of the kids who had similar diagnosis on this board. Make a big long list of the things you need to do before they are born and start ticking them off. The idea is to keep busy. I also told myself that my next scan was x weeks away, so I was not going to stress over it until that morning.
    I know this is very hard, but ‘this too will pass’.

    #6992639

    monale123
    Member

    Hi Lin, our daughter’s VM also corrected at 35 weeks and while they thought she had a club foot, she actually didn’t. They also told us that the two were not related because talipes is quite common, but that if the baby had VM, no corpus callosum (which they thought at first) and talipes, then the talipes could possibly be an indicator of a neurological issue.

    #6992895

    Mommy2E
    Member

    Hi Canadian Mom,
    Not sure where you are in Canada, but we found some info on Canadian collection. There is Cells for life laboratory located at Toronto General hospital, but the brochure also has Markham, Montreal and Calgary listed as offices. their website is http://www.cellsforlife.com. There is also a program called Insception based out of Calgary, Missisauga, Ottawa and Toronto. Their webiste is http://www.insception.com. I haven’t really researched them at all, just recently went to a prenatal fair and picked up the information. HTH

    #6993151

    i-am-pregnant
    Keymaster

    Just wanted to give everybody an update on my MRI results. Thankfully, there were no other abnormalities found. At this point it is of course still a ‘wait and see’ situation, however we left with some very specific answers we were not expecting that eased our minds tremendously. Per the neurologist the left ventricle is enlarged (my doc mistakingly told us the right) and this could indicate either an increase of fluid in this area OR a loss of brain tissue. If there is damage the area that is affected (the back portion of the left lateral ventricle) is the area of the brain that controls muscle tone. So if my son does have any issues because of this it will be with the muscle tone in his right leg. This seems so minor compared to the vast possibilities of impairment my son could be facing. My husband and I left on cloud 9. I am so happy for my son and can’t wait to meet the little munchkin. I was also told that it was obvious that something occurred in this area that caused the ventricle to enlarge, however there was no indication that it was an active problem and the ventricle is expected to remain at it’s current size of 11.9mm. She even advised me if there are problems with the muscle tone in his right leg that they would surface around the age of 6-9 months. I still can’t believe the amount of specificity I left with. We were originally debating holding off on the MRI – SO glad we didn’t now.

    #6993407

    TurtleMom
    Participant

    There is a condition called Microcephaly which has a smaller than normal head circumference. It is less common but I have seen a situation where a child with this condition develops Hydro. Is she still throwing up? I would want a MRI!!!!

    #6993663

    i-am-pregnant
    Keymaster

    Hi Everyone, Well I had an MRI about 2 weeks ago and i dont really know what to think. All the doctors had to have a couple of days to discuss what they were seeing, the fetal diagnosis specialist and the fetal brain expert (who i am told is the best in the state) and the head pediatrician thinks its aqueductal stenosis. But one doctor thinks he see’s lobar holoprosecephaly. From what i am told they are looking for a tiny bit of the falx that is just above the cavum. They say it could have been perforated or may not have formed at all. I know at the 22 week scan the specialist said that it had been perforated and I from what i can tell the falx was all there in the 18 week scan, but the doctors haven’t looked at that scan, i have asked them to, but for some reason they think it would not be useful. So I dont know what to think, should i go with aqueductal stenosis or should i just continue to live in uncertainty? They have decided to deliver early because his head had grown quiet rapidly over the last month and his ventricles have gone from 18mm to 23mm. I am so nervous because everything is so uncertain, even though it is 3 to 1 I wish all the doctors could just agree on one problem.

    #6993919

    TurtleMom
    Participant

    Dominion, my daughter does not have Chiari or club feet. But, we have friends that do. Chiari decompression surgery is typically done when the child is a toddler. Have you had a specialist review everything with you? I’m a little concerned that these recommendations were given from a tech and not a doctor with a fellowship in perinatal medicine. I wish you all the best!

    #6994175

    Humanist – aww congrats! I want to try again soon. My son is 6 months corrected but I love kids and I plan on having a big family. My husband agrees and this time I want to start trying and I want a little girl. My son has vents 19mm and 20 mm and he’s also turned out fine. He’s passing all his milestones and no delays and no problems. 🙂 thanks for the response xoxoxo

    #10785646

    kristina1467
    Participant

    Hi everyone. It seems I am in the same boat as many of you and I’ve been staring at this board for weeks in the hopes that it would take my sadness, anger, and pity party for one away so I can chuck it out of the window once and for all. Like many of you, we had our 18 week scan when the “anomalies” were found. No details, only that the vents measured a little bigger than they should be and the cerebellum was a little smaller. That was it. This scan also came less than a week before we were moving to another state. Long story short, we’ve set up new care in our new state and had a scan at 23 weeks last week. Apparently our little boy’s vents were at 13 mm at 18 weeks and are now up to 20 mm. They also found that his cerebellum is measuring 3 weeks behind his gestational age and that his head is measuring 3 weeks ahead (fluid). Researching is only driving me crazy at this point. I have read so much on cerebellar hypoplasia I can probably name every single kind with variations off the top of my head at this point along with shunting techniques for hydrocephalus. The frustration lies in the fact that there is nothing else wrong. Vermis looks good, all other brain components look good, baby boy is measuring perfectly in every other aspect (which I am grateful for) etc. We have another US scheduled with the specialists next Thursday. We’ve had the blood test done already early in for chromosomal markers at about 12 weeks and everything was negative. All I want is that MRI and I want it ASAP. I feel so alone in this and can’t just call up my OB to chat when I need to or to answers my questions right away. I’m sure many of you can relate with just wanting answers. I want to know what to expect in regards to severity. Is there a connection between the vents/hydrocephalus and the cerebellum? If there is, none of the usual markers are showing so far. UGH!!!!! I want to pull my hair out. I need to go wash my face from the tears. I want to thank you for letting me rant and if anyone has any experience with the above scenario I sure would like to hear it. The good, the bad, and the ugly. Thanks! -K

    #10785740

    Anonymous

    Hello Indogodingo!
    Your message here is excatly how I feel. I am currently 28 weeks and have reached 11,8mm Vp left and 12mm Vp right.
    I am interested to know about how your pregnancy and delivery developed. I hope out of my heart that everything went well and your nightmare has ended.

    #10785829

    amy73
    Participant

    Hi everyone! I haven’t been on this site for at least 4 years now. I’m in the UK and my boy had ventricles that measured just around 13mm during pregnancy. He was discharged at around 6 weeks old saying they were happy with everything. Firstly can I say that he has turned out to be the most loving, funny and mischievous child even though a bit of a handful! The reason I’m back here is to ask if anyone else’s little ones have had any development delays & social or emotional issues? My boy is super sensitive to loud noises (he gets terrified and cries), won’t join in to a lot of things, he finds it difficult to fit in with groups of children well probably due to communication skills that are behind and gets annoyed and lashes out. He also has problems understanding what, why, how questions. Anyway the school are asking me to see if we can get him re referred to see a paediatrician to see if any of it can be as a result of his enlarged vents to enable them to get more support at school. Any other experiences would be much appreciated. X

    #10785965

    Katherine86
    Participant

    This is my first posting, though I have been reading for the last 3 weeks. I am currently 33 weeks pregnant with our first child. At 30 weeks, my husband and I found out our baby boy has severe ventriculomegaly. I have tears streaming down my face as I am typing. This blog has been a source of comfort and hope, helping us during this difficult time. Amniocentesis is all negative. MRI several days ago did reveal complete ACC. We met with the pediatric neurosurgeon team and my son may require a shunt. The physicians predict the worst outcome. Loved ones and coworkers pity me. I am very grateful for finding this blog.

    #10785972

    qwertyuiop
    Participant

    Hi all,

    We’d really appreciate input because we seem to be getting such differing information from every specialist we see who are basing information off limited studies and some real life perspective would really help us as we’re totally confused!

    Apologies for the super long post but want to make sure I’m being as accurate as possible.

    I’ve read through a lot of posts on here for a few weeks since we got this news and it’s helped reassure me, but every time I see a specialist that sets me back.

    We had our anomaly scan at 20 weeks and 5 days and were told there was VM (we know baby is a girl already) measuring 10.8mm bilaterally. The sonographer then informed us that we would be unable to see anyone at our local hospital for the next few weeks, so we opted for a private appointment in order to get further detail.

    We saw a wonderful specialist at 21 and 2 days who firstly got his junior colleague to perform the scan (she measured 10.6mm both sides). This was just under a week after the original scan with the diagnosis of VM. The specialist then measured a few minutes later and said he felt they were closer to 11.8mm and that progression was unlikely, it was probably due to differing measurements as his junior had agreed with the original sonographer. We were told progression chance was around 5-10% and felt very reassured by statistics surrounding the chances of our baby being developmentally delayed, which are similar to what I’ve seen quoted here and in studies- between 5 to 10%.

    In the meantime, we were asked to attend an additional scan with the NHS at 22 plus 5 days and were told VM was now 12.5mm both sides. The doctor warned us that it was likely now progressive (increase of 0.7mm in 10 days) and the chance of disability was now around 30% (but haven’t seen this in any studies), and could increase should the VM be progressive in nature. We were advised to start considering the possibility of termination and referred for MRI.

    We requested an additional appointment at the hospital today (23 weeks) and were told by another specialist that the ventricle size was between 12.5 and 12.7. He stated that the risk of disability in his mind was 10-30% for this value, but was concerned due to the progressive nature. However, he did say that he was unsure if 0.7mm increase in 2 weeks would be considered “progressive” but says he feels likely.

    We’ve been told we can have an MRI but due to extensive orthopaedic metal work in my spine it is unlikely to yield results, but this can be attempted in the next few weeks.

    We’re going back to see the private specialist soon who is wonderful and this will be the only set of 2 measurements taken by the same person – however in the meantime we really wanted to hear others opinions.

    Our local hospital is now suggesting considering termination based on “poor prognosis” linked to our “progressive” VM but I’ve said I’m not comfortable with this as to me 0.7mm over 2 weeks isn’t a definite progression. (studies online I’ve seen define it as 3mm increase but haven’t specified over what time frame).

    I should add, amniocentesis is clear, TORCH screen clear, all other US findings are totally normal including detailed level 2 where they can see corpus callosum which looks intact.

    My queries are,
    – in others experience, what is “progressive” VM? is 0.7mm in 2 weeks progressive? I’ve read a lot of posts here (turtlemom I read specificially that you said 1.5mm is the error margin & raised this today but was told they feel there is definite progression as 2 people now get 12.5mm but 0.7mm increase to me is so minimal and inside that 1.5mm you mention!)
    – we’ve been told this means we have a poorer prognosis vs if they’d stayed at 11.8mm and that things are likely to gradually to get worse by 1 person and another person has said there’s a 50% chance of this but 50% to now stay the same. So we have no idea what to think! Is this other’s experience? Or did baby’s ventricles stabilise after an initial gradual worsening?
    – we were told today it was more concerning because the whole ventricle was dilated and not just the back portion (it’s still referring to only the lateral ventricles but they said the whole ventricles are dilated but usually it’s just the back portion)

    We’d be SO grateful of any advice anyone who has been through this can offer. We’re so confused by the variation of figures from different people and being unclear if it’s progressive or what to think!

    • This reply was modified 2 years, 3 months ago by  s.
    #10785975

    julianapreggo
    Participant

    I’m not sure I really belong here because my doctor was very clear in stating that at this point our baby does NOT have hydrocephalus, but it seemed like this might be the best place to find other moms and moms-to-be facing similar situations.

    I am 23 weeks today and on last friday my growth ultrasound revealed that the lateral ventricle measurements were slightly above the normal range 10.1 mm. I will go back in 6 weeks for a repeat level II ultrasound. We are just hoping that the measurements won’t be any bigger.

    From what I’ve read online it sounds like we have a very good chance of this slightly abnormal measurement being nothing. My OB said not to worry, but of course that’s impossible.

    Did anyone else have similar measurements at this point? Any general thoughts? I’m just trying to stay positive and not stress too much until we learn more at our next appointment. However I am so scared. This is my first pregnancy and I was hopping everything would go fine.
    Other than that my baby is doing great.

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