| Posted By |
Message |
cantbelieveit
Love these kids!
Member since 10/05 4708 total posts
Name:
Tammy
|
Update..Please tell me someone has heard of this and had positive results - Level II related.
Went for Level II Tuesday night. Doctor called today to say she saw some abnormalities in the brain :( Something about the ventrical tissue. I have to follow up with a high risk doctor for a consult and another sono. I am so confused because I lost her after hearing abnormality and now I don't know what is going on. I called back and left a message to call me back again to get more info and she hasn't called yet. The only other thing she said was if it was in fact a problem, it could cause compression of brain tissue.
Has anyone heard of this???? I don't know what this means for the future of my baby and I am beyond scared and an emotional wreck.
Update...
Just got back from high risk. Got another level II. Turns out there are 2 cysts on the chorid plexis (which is located in the ventricles). Chorid plexis produces spinal fluid and cysts tend to be a sign of Trisomy 18. I have to go for more genetic testing (maternity 21) and another sono in 3 weeks. Depending on the results of those 2, I may need a fetal mri and amnio. As of now, the baby shows no signs of trisomy 18 and neither did any of the other genetic tests that I had. I am hopeful but still concerned and now won't feel 100% until I see my baby. Cysts seems to be pretty common so thats another good thing I have on my side.
Message edited 2/22/2013 4:12:55 PM.
|
Posted 2/14/13 8:04 PM  |
| |
|
Long Island Weddings
Long Island's Largest Bridal Resource |
KPanas
LIF Adult
Member since 10/09 1691 total posts
Name:
Kathy
|
Please tell me someone has heard of this and had positive results - Level II related.
I dont have any knowledge on this but just wanted to say I'm so sorry :( I know this must be very scary
|
| Posted 2/14/13 8:12 PM |
| |
|
pnbplus1
Family
Member since 5/09 5751 total posts
Name:
Mommy
|
Re: Please tell me someone has heard of this and had positive results - Level II related.
So sorry you are going through this, especially with such little info at this point.
I don't have any advice for you but I imagine that once you have some more information things will make more sense. Hope the high risk dr has more answers for you and more importantly, a positive prognosis.
|
| Posted 2/14/13 9:01 PM |
| |
|
cantbelieveit
Love these kids!
Member since 10/05 4708 total posts
Name:
Tammy
|
Re: Please tell me someone has heard of this and had positive results - Level II related.
Thanks. Doc called back and said that one of the ventricals is enlarged. Could just be cyst, could be more. Go to high risk on the 22nd, gonna be a long week. My DH feels a little more at ease with more correct info.
|
| Posted 2/14/13 9:33 PM |
| |
|
Lillies
Grateful for my babies!
Member since 2/12 4571 total posts
Name:
<3
|
Re: Please tell me someone has heard of this and had positive results - Level II related.
DS had both ventricles enlarged at our level 2.. went to the perinatologists in LIJ- Dr Nanda who I loved- a week later and the new sono was perfect! He told me very often the ventricles are scanned incorrectly by the tech. I hope you get better news at your next scan!!!
|
| Posted 2/14/13 10:00 PM |
| |
|
|
|
Re: Please tell me someone has heard of this and had positive results - Level II related.
Did they mention hydrocephalus? Sending you FM 
|
| Posted 2/14/13 10:30 PM |
| |
|
|
|
Re: Please tell me someone has heard of this and had positive results - Level II related.
Btw, if I were you I would call your OB and demand a referral for a fetal MRI scan, waiting until the 22nd to see a high risk doc is just not fair. That's over a week away!! I highly recommend Dr. Mark Mittler at LIJ (pediatric neurosurgeon), see if he is covered by your insurance, if there is a problem, he will tell you what your surgical options are to alleviate the pressure on the brain (after birth of course, I wish they could fix these things in utero, which they can actually do now with certain heart problems!!).
|
| Posted 2/14/13 10:40 PM |
| |
|
babymill13
LIF Adolescent
Member since 1/13 822 total posts
Name:
Cynthia
|
Re: Please tell me someone has heard of this and had positive results - Level II related.
I feel so bad for you and DH  I am sending many and  your way....I hope you get more answers soon and good news! 
|
| Posted 2/14/13 11:55 PM |
| |
|
PennyCat
Just call me mommy :)
Member since 7/08 19084 total posts
Name:
Jib
|
Re: Please tell me someone has heard of this and had positive results - Level II related.
It's absolutely horrible to be told there could be a problem with the baby you've been growing and lovingly touching your hands to your belly for, for the past 20wks... I am so sorry for any pain and uncertainty you were put through today
I truly hope the coming weeks brings answers and a more positive outlook. I often refer to getting bad news like driving in a car when suddenly you get sideswiped and by a mac truck and thrown into a river. Somehow you will tread your way out of the deep waters. I'm that this is will end up being insignificant!!
|
| Posted 2/15/13 12:16 AM |
| |
|
cantbelieveit
Love these kids!
Member since 10/05 4708 total posts
Name:
Tammy
|
Re: Please tell me someone has heard of this and had positive results - Level II related.
Thanks everyone! I had docs office fax me the results and looks like the right ventricle was 10mm. i don't really understand but from what I read online, they are supposed to be less than 10mm so its not that enlarged. could get better on its own, could get worse. Will update on friday when I know more.
|
| Posted 2/17/13 10:05 AM |
| |
|
Ellynrose
LIF Adult
Member since 10/11 1714 total posts
Name:
|
Please tell me someone has heard of this and had positive results - Level II related.
My friend was told this with her ds. I wish I knew more, however she was sent to a high risk dr. Her DH is 2.5 and perfect. Keeping you in my thoughts
|
| Posted 2/17/13 10:23 AM |
| |
|
cantbelieveit
Love these kids!
Member since 10/05 4708 total posts
Name:
Tammy
|
Re: Update..Please tell me someone has heard of this and had positive results - Level II related.
update
|
| Posted 2/22/13 7:04 PM |
| |
|
Teachergal
We made a snowman!
Member since 1/08 3239 total posts
Name:
|
Re: Update..Please tell me someone has heard of this and had positive results - Level II related.
Just wanted to tell you I had the Maternity 21 testing and got the results in 12 days. I had a DS chromosomal marker and my results came back negative. Keep hope and try to get the testing done as soon as possible. I had mine done in the labs at LIJ, but I'm not sure where you live.
|
| Posted 2/22/13 7:16 PM |
| |
|
pnbplus1
Family
Member since 5/09 5751 total posts
Name:
Mommy
|
Re: Update..Please tell me someone has heard of this and had positive results - Level II related.
Glad you have some more information although I'm sure it's still difficult. Hope that everything turns out ok and that you can get even more info soon. It sounds like you have a lot of positives so hopefully the cysts disappear and everything turns out to be nothing more than a scare.
Just fyi - I had my Materniti21 test at Winthrop Perinatal Assoc (that's where my OB's office sends people for that test) and I had my results back in only 8 days. Had the test Thurs at 10AM. got them back following Fri at 8:30AM (and that Monday was a holiday).
|
| Posted 2/22/13 7:27 PM |
| |
|
LDrinkh20
LIF Adult
Member since 9/09 1820 total posts
Name:
Lauren
|
Re: Update..Please tell me someone has heard of this and had positive results - Level II related.
Just thought I would post that our baby had choroid plexus cysts on the brain at my 20 week level II my OBGYN, the High Risk OBGYN and my Sister (also an OBGYN) were not concerned in the slightest. They did not send me for any further testing and in fact discouraged me from doing the maternit21 test because ther esults would basically tell me what they were telling me now. They said as long as there are no other signs and bloodwork was ok then it is a normal part of brain development and to try not to worry. I am still worried of course but trying very hard to trust that allw ill be ok. I am actually very surprised that your docs are sending you for all of this testing. Also, please understand that even if you go for another sono and the cysts are gone, the risk of Tri 18 is still there. Good luck!
|
| Posted 2/22/13 8:24 PM |
| |
|
Serendipity
Summer!
Member since 4/07 7631 total posts
Name:
PrayingWishingHopingALOT
|
Re: Update..Please tell me someone has heard of this and had positive results - Level II related.
Posted by LDrinkh20
Just thought I would post that our baby had choroid plexus cysts on the brain at my 20 week level II my OBGYN, the High Risk OBGYN and my Sister (also an OBGYN) were not concerned in the slightest. They did not send me for any further testing and in fact discouraged me from doing the maternit21 test because ther esults would basically tell me what they were telling me now. They said as long as there are no other signs and bloodwork was ok then it is a normal part of brain development and to try not to worry. I am still worried of course but trying very hard to trust that allw ill be ok. I am actually very surprised that your docs are sending you for all of this testing. Also, please understand that even if you go for another sono and the cysts are gone, the risk of Tri 18 is still there. Good luck!
This was me EXACTLY. DD had this at the Level 2 sono. I was a mess. I cried for days. My high risk dr (who I was seeing for reasons unrelated to this) explained that if those findings stand alone and there are no other "markers" the chance of it being Trisomy 18 is very low.
DD was born healthy.
One thing I will I did not know that even if the cysts disappear, the risk remains. DD's cysts did go away by 26 weeks. But I didnt know about that risk still.
|
| Posted 2/22/13 8:46 PM |
| |
|
LDrinkh20
LIF Adult
Member since 9/09 1820 total posts
Name:
Lauren
|
Re: Update..Please tell me someone has heard of this and had positive results - Level II related.
Posted by Serendipity
Posted by LDrinkh20
Just thought I would post that our baby had choroid plexus cysts on the brain at my 20 week level II my OBGYN, the High Risk OBGYN and my Sister (also an OBGYN) were not concerned in the slightest. They did not send me for any further testing and in fact discouraged me from doing the maternit21 test because ther esults would basically tell me what they were telling me now. They said as long as there are no other signs and bloodwork was ok then it is a normal part of brain development and to try not to worry. I am still worried of course but trying very hard to trust that allw ill be ok. I am actually very surprised that your docs are sending you for all of this testing. Also, please understand that even if you go for another sono and the cysts are gone, the risk of Tri 18 is still there. Good luck!
This was me EXACTLY. DD had this at the Level 2 sono. I was a mess. I cried for days. My high risk dr (who I was seeing for reasons unrelated to this) explained that if those findings stand alone and there are no other "markers" the chance of it being Trisomy 18 is very low.
DD was born healthy.
One thing I will I did not know that even if the cysts disappear, the risk remains. DD's cysts did go away by 26 weeks. But I didnt know about that risk still.
Yeah I was sad to learn this but all of the docs explained it to me. Basically if the cysts are there at this point it is a marker even if they disappear. Also, if they don't disappear, it's ok because many healthy babies are born with them daily and plenty of people live with them their entire lives without knowing! The High risk doctor explained that he hates to even tell parents about these cysts because isolated Cpcs really mean nothing!
|
| Posted 2/22/13 8:50 PM |
| |
|
EandF
LIF Adult
Member since 11/11 1674 total posts
Name:
|
Re: Update..Please tell me someone has heard of this and had positive results - Level II related.
I found out today that  has a cyst on her brain. I saw the nurse practitioner at my obgyn's office and she was very calming and reassuring. The bloodwork from my NT scan and bloodwork I had last week all came back good. The sono I had last week showed the cyst. I am waiting to take my 20 week scan and then taking it from there. She said there's a very good chance it will be gone, so I will be doing some heavy praying these next few weeks.
I was initially pretty upset but I've seen lots of posts on here regarding this issue and everything turned out fine. It so helps to hear others' experiences. I know LO is already strong so I'm relying on that.
It's all in God's hands. Just wanted to let you know you are not alone. Thinking of you and please keep us posted.
|
| Posted 2/22/13 8:51 PM |
| |
|
babymakes3
Almost there!
Member since 7/06 7376 total posts
Name:
|
Re: Update..Please tell me someone has heard of this and had positive results - Level II related.
My baby had bilateral cysts on his/her brain at the 20 week sono. We had no other markers of trisomy 18 and we figured out that with our NT scan results, our chance is less than 1% so we delayed further testing until we had a follow up sono. The follow up sono at 25 weeks showed they disappeared. It was scary news but with some research and the genetics counselor talk, we feel good. If we had more markers, I would've definitely got the materni21 test.
|
| Posted 2/23/13 8:13 AM |
| |
|
Squirl1003
LIF Toddler
Member since 7/07 404 total posts
Name:
Me
|
Re: Update..Please tell me someone has heard of this and had positive results - Level II related.
My son had the cysts on his brain at the 20 week also. When i returned for my next sonogram 4 weeks later, they were gone. So stressful but i have heard that they are common.
|
| Posted 2/23/13 9:47 AM |
| |
|
cantbelieveit
Love these kids!
Member since 10/05 4708 total posts
Name:
Tammy
|
Re: Update..Please tell me someone has heard of this and had positive results - Level II related.
Thanks for all the support and good stories!!!
|
| Posted 2/24/13 12:52 PM |
| |
|
