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Re : bilateral choroid plexuses cyst -Trisomy 18-UPDATE

Posted: Wed Jul 01, 2009 11:36 am
by irbit
Thanks,ladies! I've decided not to do the amnio. I'm still full of doubt and questions so the next 4 months will be hard. I will keep you updated.

Re : bilateral choroid plexuses cyst -Trisomy 18-UPDATE

Posted: Wed Jul 01, 2009 11:36 am
by saving_grace
From what I've casually read before about the cysts is that it usually means nothing unless there are other abnormal things present too. I would want more testing such as a better ultrasound or something. I would consider the amnio if Trisomy 18 was strongly suspected only because I know that Trisomy 18 is nothing like CP or Down's or other types of special needs. (((HUGS))) Praying that your baby is absolutely perfect and all this worry will be for nothing.

Re : bilateral choroid plexuses cyst -Trisomy 18-UPDATE

Posted: Wed Jul 01, 2009 11:16 am
by neslo
First - I'm so sorry you are going through all of this. I just wanted to share my Amnio experience from yesterday - in case it helped ease your worries.

I'm 16w now. I opted out of all the other screening tests and went right for the amnio - just because I really wanted to know one way or the other what to expect. Amnio seemed like the best way to do that. When I signed the consent form yesterday they told me the chance of miscarriage was 0.5% (or 1/200). I guess in my mind that was a smaller number than my chances of developing PE again and loosing a baby so it seemed worth the risk to know in advance if we would be having a special needs baby.

The procedure itself was not a problem at all. It took all of 10 minutes total. The Dr inserted a needle into my stomach. That hurt a little. Removed 2 vials of fluid. Couldn't really even feel that part. And then removed the needle. That hurt more than any other part of the procedure - but it still wasn't very painful at all. There was some soreness and a slight ache afterwards - but it's completely gone today.

Sorry - just my 2 cents!

Re : bilateral choroid plexuses cyst -Trisomy 18-UPDATE

Posted: Tue Jun 30, 2009 11:46 am
by jamie w
Many things I want to say:
1. I am so sorry you are having such a rough time and so much worry!
2. We were told testing showed that DD 1 had spina bifida and she is a happy healthy 4 year old *without* spina bifida
3. We were told DD 2 had a cyst in her brain (after birth) found on MRI. The Neuro later says it wasn't a cyst but rather a little hole where brain tissue just never developed and it is of no consequence
4. I chose not to do the quad screen for the same reason you mentioned above- I would not abort anyway so I understand not doing the amnio
5. If you do have the amnio and things do turn out to be trisomy 18 you will have had time to network with other parents which has REALLY helped me to cope with Anna's CP. I find strength through others who have gone there before me. If you decide to have it and things are normal then that is one less worry.
6. If it is Trisomy 18- special needs kids are amazing. My Anna has amazed me in ways I never imagined. I know CP and T18 are not the same but the kids are special needs either way. The baby will be your baby regardless of what happens and you will love this child no matter what.
5. You cannot make a wrong decision. Whatever you chose to do is the right thing for your family.
6. Google will make you insane- I am living proof.
7. I highly recommend getting the high resolution scan if you have not already- it can see so much more.
8. (((HUGS)))
9. Keep coming here for support

Re : bilateral choroid plexuses cyst -Trisomy 18-UPDATE

Posted: Tue Jun 30, 2009 11:15 am
by milesymommy
All of our tests turned out normal, but we were offered amnio anyway because of our age. We talked about it before any tests, and ultimately decided since we would not abort, it was not worth the risk, even if the risk is much lower now. Peace of mind and being prepared are also very important. But as your baby grows, the hi-res U/S's can show more "markers" of Trisomy 18 or other abnormalities. It won't be 100% accurate, but it will paint a clearer picture for you.
Best wishes on your journey. <<hugs>>

Re : bilateral choroid plexuses cyst -Trisomy 18-UPDATE

Posted: Tue Jun 30, 2009 11:13 am
by kbunsey
Yes, get off "Dr. Google" as others call it. I know you are worried and I know myself too that the internet is usually my first stop when I'm freaking, but, my hubby has had to intervene on more than one occasion b/c it does become obsessive and perhaps even scarier than necessary.

I might talk to someone else about the choroid plexus cyst or talk to your doc more. Don't know what bilateral means, but my first baby had a choroid plexus cyst and we were scheduled for a higher level u/s to check everything and the midwife said not to worry at all in the meantime - they are common or usually nothing that doesn't resolve itself. Well...before that appointment ever came, I was hospitalized w/ PE. FB had a BPP, which did not go well, but, her cyst went away. No cyst anywhere on her little head. I suppose that was good news. So...I'd ask if perhaps you could have another u/s where they could check the cyst and look for other markers for Tri 18 before doing the amnio. I'm not a doctor, but if I were you I'd definitely talk to mine exhaustively about it, esp before you scare yourself silly on the internet.

Will be thinking about you and looking for your updates. Be well and do something good for yourself that does not involve a computer. ;-)

Re : bilateral choroid plexuses cyst -Trisomy 18-UPDATE

Posted: Tue Jun 30, 2009 10:57 am
by irbit
Thanks for your support,ladies.

I think I need to get off the internet cos I'm driving myself crazy. By this point I feel sick to my stomach. I am surrrounded by pregnant girls at work with no complications whatsoever. I am happy for them but it's hard being around them at the moment, if it makes sense. If only I could switch off..just for a second :)

I will give the amnio some more thought.

Thanks again, and if anyone else has been there pls gimme a shout.

Re : bilateral choroid plexuses cyst -Trisomy 18-UPDATE

Posted: Tue Jun 30, 2009 09:40 am
by brianned5
I'm so sorry you're going through this. I don't know much about genetic disorders but I do know amnio's can cause labor/miscarriage which is why I always refuse to have one. I was born two 1/2 months premature because of an amnio done on my mom and I do know a couple ladies who miscarried their babies after an amnio, BUT that does seem to be rare and not the normal outcome! It is good that your baby is still growing, and the doctors can be wrong about genetic conditions. It's really what you can live with and what is best for you. I would discuss this with your doctor and get all the risks before making a decision. Good Luck!!!

Re : bilateral choroid plexuses cyst -Trisomy 18-UPDATE

Posted: Tue Jun 30, 2009 09:28 am
by susheli
Oh Katia,
I can't answer your specific question, but just wanted to say how sorry I am to hear that you're having to go through all this. ((((((((((((hugs))))))))))I feel the same as you about amnios and probably wouldn't have chosen to go through with one had I been in that position. Though I know many many women who have had them and have never heard of anyone losing the baby after. Apparently the risk is also relative to who does the amnio, meaning if you have in done by a doctor who is very experienced at amnios, the risk is much lower. I imagine the peace-of-mind or simply knowing one way or another would make a huge difference if you decided to go ahead.
I often think how tough it is that we live in a time of so much testing ... of course we want all that for the health and safety of our babies, but sometimes it feels like every test leads to another and - luckily - so often all turns out well anyway.
It's such good news in any case that your baby is growing well. I'm thinking of you and hope some others with more concrete information will answer soon.
xox Sush

bilateral choroid plexuses cyst -Trisomy 18-UPDATE

Posted: Tue Jun 30, 2009 07:31 am
by irbit
After that scan with my consultant I just coudn't let it go and wait for the next one in 3 weeks time.I also wasn't ready to do the amnio. I came across some study by Prof.Nicolaides -a well-know fetal medicine specialist and managed to track him down.This Wedsneday gone he did an ultrasound and saw all the signs of Trisomy 18 right away.He called my consultant an idiot..Then he literally forced me to have the amnio there and then..I am expecting a phone call with main results any minute now.

We are totally devasted and lost...I think my pe is coming back too -I woke up with swallen ankles and severe headache that just won't go away...

I keep thinking this is a nightmare and I will wake up any minute now..

Thanks for listening.

P.S My comp is playing up - sorry if I've posted this twice
*********************************************************************
Hi, I posted last week re the results of my 21 week scan: 2 vessel cord,suspected IUGR. I had my follow up today.Good news is that the baby has grown and so far the measurements correspond to gestational age. Consultant still thinks it will be small due to 2 vessel umbilical cord. Now bad news - he found bilateral choroid plexuses cyst, which could mean genetic disorders, e.g Trisomy 18.

IF IT'S NOT ONE THING, IT'S ANOTHER!!!

He advised amnio. I don't think I can go through with it.Whatever happens, I won't be able to terminate at this stage.Plus the amnio carries a risk of m/c,right? I am reading stories on google how babies turned out fine as long as there were no other abnormalities. The doc says I am at higher risk cos the other marker is the 2 vessel cord...

Has anyone else been in the same situation? If your baby has genetic disorders did you have a 2 vessel cord?