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Pregnancy after Decompression

Hello everyone, this is my first post - I'm not having much luck getting a clear answer on this one and thought someone might have some info.

I was diagnosed last April and had my decompression in May (I was very fortunate to get a quick date).  I have been doing well, before the surgery I was unable to walk without a cane, has headaches, and all the usual stuff.  Except for some weakness in my hand most of the symptoms improved afterwards.

My neurosurgeon did not recommend any follow-up after my 8 week checkup, and has since left the hospital.  I'm about to start trying to conceive, and I am a bit anxious about the safety of labour and delivery with increased CSF pressure.  I've heard conflicting things.  My GP is great but doesn't know.  Has anyone gotten any advice from a professional about this?

Thanks so much!
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Avatar universal
My daughter has Chiari malformation, she had her first child 7 years ago and is now 6 months pregnant with her second child. She had surgery 10 years ago to make proper space for the cerebellum and was fine for about a year. She then started having some of the same issues she had prior to the surgery again.  When pregnant with her first child ,once she was in her 5th month all symptoms came back. Headaches, dizziness, off balance, severe jaw pain, feeling like she will pass out. She had a c section and they would not give her an epidural so she was put under. With this pregnancy it is the same symptoms right when she entered her 5th month.  I feel its due to the spine curving to make room for the baby and it puts  a lot of pressure on the spine and cerebellum area. It could possibly even mess with scar tissue in that area but the symptoms are Def exactly like they were when she was 16 before the surgery done by Dr Ben Carson.  Its scary and hard to see your child go through this . I don't think they know enough about it so please take into consideration that while pregnant it might be best if you could even take a leave of absence if these symptoms should arise. I worry about her driving to work and it is hard for her to work right now but she has to in order to keep her ins. :(
Helpful - 0
1122824 tn?1274107014
Hi Tamara,
I got pregnant many years before being diagnosed with ACM & Syrinx. My pregnancy was generally straightforward except for the syncope and near syncope.
During the labour, I had a terrible migraine headache to the stage where I couldn't even speak. I can't really explain what happened immediately after the birth, but I felt like I had left the building. I distinctly remember hearing somebody shouting 'breathe', then I came around. I have never requested my notes so don't know what happened or even if anything strange was reported.
I have been having problems with different things for many years and I do believe it all started or became much worse following childbirth. I agree with Selma that you should wait until you are satisfied that your questions have been answered by the right professionals.
Whatever you choose to do, good luck and be careful.
Helpful - 0
620923 tn?1452915648
COMMUNITY LEADER

  Hi and welcome to the Chiari forum.

From all that is said regarding this topic, I really feel it is an individual thing, as to what else u have going on, related issues/conditions and how u recover from the surgery. This is y it is so very important to do testing for all the related conditions b4 u have surgery as they can affect how u feel and heal post op.

I had one natural delivery prior to getting my chiari dx and I did have issues was in the hospital 5 days...and I was younger...I have no idea if at that time if I had been dx'd  and had surgery if I could have had my child....

Times change and advances in medical procedures change...but most important is we can not follow time lines and guidelines as a one size fits all  as we r all diff and will respond diff to the surgery and recovery process.

Talk with ur NS and OBGYN to see how they feel...
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Avatar universal
Hi I was diagnosed in September 2011 and had surgery in january 2012. to be honest all my questions pre op where all about getting pregnant my neurologists didnt seem to have any concern. since the op (very rough for first few weeks) but now 6 month on I feel really good. as a midwife I still feel i dont have all the answers yet re delivery and getting pregnant, but after much discussion with several anesthetics, I dont think there will be a problem for a normal delivery, to limit stress at delivery an epidural would be ok then to limit pushing then a possible instrumental (forceps or ventouse) done early would be possible after all I dont think I could cope with another scar on my body. so when I hopefully get pregnant again I will definitely aim for a vaginal delivery.
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Avatar universal
It's interesting, because my GP spoke to a neurologist who said not to worry, I didn't need any follow up, and I don't need a c-section, so she doesn't feel that the pregnancy would be high risk.  I'm hearing the opposite online, so it's confusing.

I am only 8 months post op, but we're not planning to start trying to conceive until the summer, and I'm actually doing really well.  The first 5 months were brutal, but I'm back to almost all of my activities.  I'm fairly confident that my body can handle pregnancy, but I'm worried about losing my progress with a dangerous delivery.

Thanks for all the info, everyone.  I guess I might need to shop around for the right OB!
Helpful - 0
Avatar universal
I had decompression surgery November 2009 and my surgeon also did not want any follow up with me even though I am still having problems.  However, I still wanted another child and I couldn't get any answers.  I was on Topamax and I got pregnant December 2010.  I weaned myself off Topamax before I got pregnant (planned pregnancy).  I talked with my OB and I was a scheduled c-section the end of August 2011 because of my chiari.  You will just need to let your OB know right away of your decompression surgery.  I had to bring in my post op reports and give a copy to the OB.  There is a great video on The Chiari Institute's website for Pregnancy and Chiari.  It explains what happens when you have chiari during pregnancy and delivery and gives you information to give to your OB.
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Avatar universal
I had wondered about this too. I keep telling my parents/family that I will probably end up having c-sections because of increased pressure when straining.
Helpful - 0
847512 tn?1272567062
Hi just FYI I saw a professional after I had ny surgery. My gyno told me I have to have csection because of the strainig from the pushing and I saw a specialist for high risk pregnancies because the Chiari can be at times genetic. They told me not to Conceive while on the topomax so to make sure I use protection due to the side efrcts on the baby from the meds and again my deliveries will all have to be c-section. I would talk to a dr that deals with high risk pregnancies before u Conceive to go over things and make sure ur healthy enough to be pregnant for u and ur soon to be child.
Helpful - 0
620923 tn?1452915648
COMMUNITY LEADER

  Hi and welcome to the Chiari forum.

If I understand u correctly, u r not even 1 yr post op? and if I am right, I would suggest that u wait at least until u r closer to being 2 yrs post op...as that is the time frame for ur nerves to heal.

Becoming pregnant may affect u and the process of healing and to me, I would just wait....

U also need to talk to a OBGYN and let them know about ur surgery as ur delivery should be a C-section...as u still do not want the straining from a natural delivery.

There are books on this topic by Diane Mueller...a RN....

Again, this is just my opinion, but u have to go by how u feel and how u r doing, and if u were released at 8 week?....did u have a post op MRI?

I am confused...what Dr do u see at this point, so u have a NL or a PCP that is helping u?

   "selma"
Helpful - 0
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