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Thread: Scared.... I have hydro with VP shunt and I'm Pregnant..

  1. #1
    Community Member dagaz's Avatar
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    Default Scared.... I have hydro with VP shunt and I'm Pregnant..

    Yes complete shock because I am panhypopituitary but a change in my meds surged ovulation obviously... I'm a in my 40's and have read things about women needing shunt revisions because of hydro. Does anyone have any experience with this... I'm freaking out. Not only because of the shunt but how do I tell my husband. We obviously weren't trying to restart our lives with babies and such. Our daughter is in University ... big distance between siblings ... Thanks for any input.

    Connie
    Last edited by dagaz; 11-17-2011 at 06:41 PM.
    Brain/Pit tumor=17 brain surgeries 20year csf leak(Feb, 1993) After initial tumor removal!, SPMS , Hydrocephalus from a intraventricular hemorrhage! Panhypopituitary, Diabetes Insipidus, tension pneumatocele, ( air under the skull next to the brain), 2 craniofacial craniotomies, several shunt revisions, 7 bifrontal craniotomies ... Dag "If I started crying I wouldn't stop!

  2. #2

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    Hello dagaz (connie) can not give any on pregnancy or cfs because you have have more experience in leaking then most people but i can thankyou for helping others. If your husband is a good man lean on him your both in this together. Hope the fear has passed somewhat.

    All the best

    david

  3. #3

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    Lizard would be the person to talk to about pregnancy and hydro. I am sure that she has a ton of resources for you to look at.

    Marcie

  4. #4

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    Congratulations, Connie!!!! :)

    When did you find out? How far along are you?

    The first thing you'll need, because of the hydro and your age, is a high-risk OB. Also, make sure s/he and your nsg communicate directly with each other.

    About 18 years ago, my good friend, Nancy Bradley, started the most comprehensive Maternal Hydrocephalus study yet. Check out her site at www.hydrowoman.com. It has an abundance of info that, I think, will be a comfort and reassurance to you. Some of the women did have to have shunt surgery during the preg, but it's not nearly as common as you might think.

    Good luck, and please stay in touch!! <3

    LIZARD :)
    LIZ in Li'l Rhody; hydrocephalus dx'ed at 3 weeks old. No shunt surgery in 32 years! Epilepsy well-controlled and autoimmune issues being worked on. Mom to Caren, 21, successful ablation 4/18/07 for WPW; and Andrew, 18 (autism dx'ed at 2 1/2, 13 mm ACM dx'ed at 5 1/2, no surgery, doing awesome!!) Wife of 22 years to Don...and friend to Gina. RIP. 9/5/66-10/22/07 :(

    http://s.excoboard.com/Livingwithhyd..._Gina_Libonate
    http://health.groups.yahoo.com/group/autism-chiari/

  5. #5

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    Connie,Congratulations. Best of luck with your pregnancy..Kristin
    Kristin~~ When life deals you lemons,make lemonade!! And coffee and chocolate are both addictive!!~~

  6. #6
    Community Member dagaz's Avatar
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    Thanks guys... I haven't had a lot of luck with pregnancies in the past so I'm not getting my hopes up... Thanks for the link Lizard... I will let you guys know how it goes... So far the H.A.'s are off the charts... not fun...
    Brain/Pit tumor=17 brain surgeries 20year csf leak(Feb, 1993) After initial tumor removal!, SPMS , Hydrocephalus from a intraventricular hemorrhage! Panhypopituitary, Diabetes Insipidus, tension pneumatocele, ( air under the skull next to the brain), 2 craniofacial craniotomies, several shunt revisions, 7 bifrontal craniotomies ... Dag "If I started crying I wouldn't stop!

  7. #7

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    Quote Originally Posted by dagaz View Post
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    So far the H.A.'s are off the charts... not fun...
    Aww...sorry to hear that! :( <3
    LIZ in Li'l Rhody; hydrocephalus dx'ed at 3 weeks old. No shunt surgery in 32 years! Epilepsy well-controlled and autoimmune issues being worked on. Mom to Caren, 21, successful ablation 4/18/07 for WPW; and Andrew, 18 (autism dx'ed at 2 1/2, 13 mm ACM dx'ed at 5 1/2, no surgery, doing awesome!!) Wife of 22 years to Don...and friend to Gina. RIP. 9/5/66-10/22/07 :(

    http://s.excoboard.com/Livingwithhyd..._Gina_Libonate
    http://health.groups.yahoo.com/group/autism-chiari/

  8. #8

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    Hi Lizard,
    I found out Monday I am 5 weeks pregnant 😀. I am 27 and this is our first..I found hydro woman posts a few years ago. I have a VP shunt because of congenital hydrocephalus with aqueductal stenosis. I had my first placed at 3 days old (which failed when I was 4 and was replaced with another one then). Anyway, I saw that you have controlled epilepsy. I don't have epilepsy but I have a seizure disorder (currently controlled with meds). Neuro said the med I am on is the best to be on during pregnancy. Did you ever grow out of your seizures for a period of time after pregnancy? I know someone who did, so I was curious. Also, did your OB consider you to be high risk? Thank you! 😀

  9. #9
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    Congrats to Akimmel, and Connie on their pregnancies! I don't know squat about shunts but I do know how to find neat links and videos about pregnancy in general. Check out a documentary called "In The Womb" It aired on NatGeo around 2008. It is about fetal development and friends of mine, both able bodied and disabled who were pregnant found it very helpful.

    Connie, I'm so sorry you had other difficulties with previous pregnancies. A friend of mine lost a pregnancy due to a problem with blood clots so perhaps you should check to make sure your difficulties were not due to blood clots forming in the placenta. I pray all goes well for you and baby! If you want to chat about pregnancy in general with me pm me or let me know. I'm kinda obsessed with babies and pregnancy. In regards to your husband do not be scared. Just tell him the truth. You have a little human life growing inside you that he helped make and he should be happy and responsible about it. See this pregnancy through and you will have a wonderful bundle of joy at the end of it that will make it more than worth it!! Trust me! Perhaps your family can help from a distance or one of you could move closer to each other temporally??
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

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