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6346533 tn?1441299047

Chiari and pregnancy after surgery.

Hi everyone,
Would really love some advice and info if anyone can help me?
I was diagnosed with chiari type 1 last summer, and was decompressed on the 21st of October last year so i'm just over a year post op now.
I found out a couple weeks ago that i was pregnant and it was a huge shock as i thought i couldn't have children and me and the other half had been trying for years before i got sick and never any luck.
So obviously it was not planned but i am happy about it, but also super nervous!
Iv'e heard so many different things about getting pregnant with chiari that i don't even now whats right or not. And especially only been a year post op and still having some problems with my headaches because the operation has apparently caused me to get sever migraines and tension headaches as well as the ongoing chiari symptoms. And not been able to take any medication now too.
I just wonder if anyone else is in my situation or has been and can help me? I would also like info about the birth too please as i keep hearing you have to have a c-section is this true? i have my first midwife appointment on Wednesday will i have to mention about c-section and having chiari and the risks and that or will she already know about them?
Sorry for the huge paragraph lol just a nervous first time mummy to be who could use some help, im about 7 weeks gone atm.
Thankyou xx
39 Responses
620923 tn?1452915648
COMMUNITY LEADER

   Hi   Congratulations...!!! How  wonderful,....Chiari  can  affect so many  things in  our bodies including hormones  so it  may  have  been  Chiari that  was  preventing you getting pregnant...I too had  issues  and only  had  one child....I did  not know  about my  Chiari  until  after  my DD  was  grown....

Everyone is different as  to if they can  strain at  one yr  post op while  having  a  child....it is not the  best  thing  as  you  have nerves  that  are still  healing,..Only  your NS and OBGYN  can suggest what they feel  is  best for  you....Tell everyone that  will  be in charge of   you and  your  childs  care  about your  Chiari and the surgery.
There  is  a nurse that works  with  a Chiari NS that wrote articles on Chiari and pregnancy.Her name  is Diane Mueller,...here is a link-http://www.conquerchiari.org/subs%20only/Volume%203/Issue%203(4)/Chiari%20&%20Pregnancy%203(4).html
9432311 tn?1432825085
Hello and welcome to our encouraging and supportive community. First, let me congratulate you. My pregnancy was 18 years ago but it was just yesterday. I did not know about my Chiari then, and I had a pretty easy healthy pregnancy. The birth (vaginal) was definitely a defining moment in my life - not like anything I had ever experienced before. Do not let anyone scare you with war stories; some people really love to talk about suffering. I won't lie about it, there was pain at an intensity I have not since felt. Then there was a little boy to love. I wonder how things would have been different for me if I knew back then that I had chiari. Maybe the birth intensified my symptoms because of the pushing. Who knows?

The only wisdom I have to share with you is to keep a very detailed journal to record symptoms, when they occur, and anything you notice that may bring them on. Keeping accurate information will be so helpful for you with doctor visits. Definitely research some natural remedies for pain. I do know many people in this community are also very interested in natural healing methods, so someone may be able to give you some information.

This has to be a pretty exciting time for you, and I send you all good wishes for lots of happiness. Keep checking back because others will reply with some of their own experiences. But the key thing is that you are not alone and that you are part of a really great bunch of kind people.
6346533 tn?1441299047
Thankyou for responding :)
I had not even though it could have been the chiari preventing me from getting pregnant but it does make sense.
I will do i had to go to the hospital for an early scan last week and had to tell the nurse about my chiari and surgery and she had no idea what it was lol, i will tell my midwife and hopefully she will know about it or send me to someone who does :)
i will be sure to make sure everyone knows.
And thankyou i will have a look at it. x
6346533 tn?1441299047
Thankyou for responding and for your kind words :)
That is what i'm most scared about - the birth! mainly because iv'e heard so many horror stories and well just so many different stories in general.
Yeah i have heard that too about the pushing that is why i was told you had to have to have a c-section but i dunno if that is true or not.
Thankyou for the wisdom :) i will defiantly do that.
It is so exciting but also so scary, i'm so nervous about everything especially since we tried for so long and now i feel like it is too good to be true but also because of my chiari and related issues i just don't want anything to go wrong with baby or for me to end up really sick again. So yeah, lol very nervous.
But thankyou that means alot :) xx
10169340 tn?1415846161
Congratulation!!!! KirstyPie, I really don' t have anything more to say, Selma & Elisaandbucky really did give very good advice.. But I will say I had 3 pregnancy, now my kid are all grown up with kids of their own...well 2 are the youngest is 23 and lives at home...I remember the day they were born as if it was yesterday... What I am trying to say is ENJOY your pregnancy...and tell your doctors about your Chiari and follow there advice..savor every moment...then put it in GODS hands..He decided now was the rite time so  he will take care of you and your baby don't worry.. even if you do have to have a c-section it's not that bad... my oldest daughter had to have one for both my grand kids... Take the worry out of your mind that's not good positive thinking happy thoughts... Healthy mommy & Baby !!!  :)
Avatar universal
Congrats on your pregnancy! I was diagnosed about 2 months ago with chiari I have s 3 yr old and my daughter will be 1 next month. Both pregnancies and labor/delivery went great. I started having most my symptoms a couple months after having my daughter.  If I had known then I had chiari I probably would hsve had a c section because I heard the pushing during giving birth can
Avatar universal
Make chiari worse
9432311 tn?1432825085
Nellan12 gave you the most valuable words. She's right; "ENJOY your pregnancy." then she said to "put it in GODS hands," which is really the most wise thing anyone can advise you to do. In God's hands I have coped quite well with some of the tougher challenges. I have heard it said that the opposite of fear is faith, and I know that hearing that has certainly taught me not to be so afraid of what I cannot control. For you, KirstyyPie, be a happy mama and love the tiny little life inside. Celebrate your strength.
10169340 tn?1415846161
Oh by the way, I just wanted to say I love your screen name, my name is Nella the N stands of my last name... But my grand daughter, " who is the light of my life" calls me Nonnie Pie lol !!! so I just love love love your name!!!
My granddaughter's name is Gabriella, we call her Gabby, she is 4 yrs old and was born with 18P deletion ( witch is part of a cromo zone missing in her body) but she is a tough little girl and has over come some  big difficulties...and also just as big  of an attitude lol  !!! Loves to wear moms makeup close & high heel shoes!!! I will post pictures of her on my profile...so you can see.. I will tell you her story one day but in the mean time KEEP YOUR FAITH IN GOD !!!
6346533 tn?1441299047
Thankyou so much everyone for your kind words and advice you have all made me feel So much less nervous :) Im so exited to become a mummy and to just actually be pregnant I Just want everything to perfect :) .
6346533 tn?1441299047
Thank you! its what my niece used to always call me and it sorta stuck :) and everyone started to call me it . Nonnie Pie that's so cute! bless her :) Gabriella that a pretty name, aww bless her She Sounds like a strong little girl :) I bet your so proud! I will have a look I bet she is beautiful.
Thank you :)
10169340 tn?1415846161
i have been trying all morning to upload sone photos ... my the way this system is set up it isa little hard for me because it wants to upload the entire album!!! and trust me no one wants to see all the pictures  GRANDMA takes or in my case my grand kids call me Nonnie.. but give me time i will find a way to get some of her on to my profile...
6346533 tn?1441299047
Just wanted to let everyone who helped me out and sent kind words that i actually lost the baby :(
Gutted isnt the word. Worst experiance of my life. x
6346533 tn?1441299047
Let everyone know*
620923 tn?1452915648
COMMUNITY LEADER

  My deepest Sympathies on your loss....words can not express what it is you need at this time....I know as I went thru the same loss......

  ((hugs))
9432311 tn?1432825085
My prayers for you and your family are to find peace and comfort in God's hands. I am very sorry and sad to hear of your loss. What are the right words to comfort one with your depth of loss? You will be in my prayers for a while, and I wish for you to comforted by God.
6346533 tn?1441299047
Thankyou both of you, your kind words mean alot to me.
SelmaS - im so sorry you went thru this too,it is heartbreaking and no1 should ever have to got thru it.
Feel so down- Like i have missed my chance as i thought i could not have children before and we had been trying for years :( .
Was a missed miscarriage too so i had to wait almost 3 weeks knowing my baby had passed and waiting for it to happen :'( .. And then i thought i had passed everything (sorry for tmi) but i had not they called it ongoing and was just over 2 weeks before it stopped.
I also feel like my body is just playing cruel tricks on me its been a month since my miscarriage actually started and i passed thing, and have felt like maybe i was getting af now and my body could return to normal. i have been feeling like it all week and still nothing. had one spot of light blood yesterday thats it. and now last few days i have started to feel like i did when i first got pregnant before, back is aching and very mild pains in pelvic area, cant stop weeing, getting sensitive to smells again and some making me feel sick. but im not pregnant i did a test today just to be sure so feel like my body is punishing me or something :( .. asif im not heartbroken enought! ...
Sorry for the life story and tmi .. just needed to tell someone how i fell.
6346533 tn?1441299047
things* not thing that sounds harsh :(
9432311 tn?1432825085
My prayers continue for you and for some sense of ease (if there can even be any) for the pain you are in. I have no words that could even come close to soothing you. Please just know that you are in my thoughts and continuing prayers.
620923 tn?1452915648
COMMUNITY LEADER

  I agree no one should have to go thru it either.....but I think you can look at this as a positive....meaning...it can take your body up to 2 yrs to fully recover from this surgery and it may have been your body's way of saying you are not ready....and that is good bcuz you did get pregnant....I tried for 5 yrs....so I know...and it also brings to mind what I have found out since my Chiari DX...that EDS can play a role in becoming pregnant....so if you have not had this ruled out yet,, do it now...it may help in the long run....BTW I have a wonderful daughter I could not be prouder of....
6346533 tn?1441299047
Thats what my dad said too about my body not been ready yet.. and yeah my fiance said at least you got pregnant so maybe one day it might happen again.. still heartbraking thou no matter the reason :( isnt it. wow 5 years bless ya! it had been almost 3 we had tried for and then i got sick so left it as i was too poorly its so frustrating isnt it, espech when i know so many people pregnant atm and most of them didnt even wat a baby was an accident  :'( ..  what is EDS? and aww thats lovely :)
6346533 tn?1441299047
Thankyou so much means alot x
620923 tn?1452915648
COMMUNITY LEADER

  EDS is Ehlers-Danlos Syndrome this is a connective tissue disorder that is related to Chiari...many of us with Chiari have this condition as well. Hyper mobility type of EDS is the most common but there are many types and you should be checked for this condition as it too can affect how you recover from surgery.

BTW- my DD is going on 4 yrs trying and she was DX'd with endometriosis and had surgery to remove some of the scar tissue....endometriosis is related to EDS....and can  have an affect on  getting pregnant.
Avatar universal
Congratulations!!!!

I had a miscarriage with my first child with awful headaches and we never found out why. My second pregnancy with my daughter who is now about to be 4, ended up being a C-section due to so much pressure at the base of my head an neck while trying to push and then she was stuck at 7cm on my cervix bone. It was a rough C-section after going through labor. My third pregnancy with my son was amazing, and I enjoyed it very much. He was a scheduled C-section as my hospital doesn't allow VBAC's. And my son will be 2 in a week. I just was diagnosed with Chiari the end of November 2014. Now knowing what I know I truly am happy that I ended up needing C-sections. Good luck momma and yes I think you should mention a Csection to your midwife.
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