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Holy smokes I was diagnosed March of 2016! I had no clue what it even was, had never heard of it! I had decompression surgery within 2 weeks of being diagnosed! Im now 27 weeks pregnant and going to high risk Drs. Baby girl was officially cleared of having it last month! Now having my other girls checked for it! How are you doing?
Chiari malformation type 1
Anyone here with Chiari? I've had two decompression brain surgeries, when I was 14 and when I was 21. Before my second surgery I developed a number of large syrinxs on my spinal cord causing me to start to lose feeling and function on my right side. I'm symptom free now and I'd like to keep it that way so I'm choosing to have a csection. I'm hoping my symptoms aren't triggered throughout the pregnancy. My worst fear is having something go wrong and needing another brain surgery, keeping me from taking care of my baby.. or god forbid having to deliver early and putting my baby at risk!
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Ni
I had severe headaches, pain and numbness in my arms hands legs and feet. I did have a seizure before first surgery too. The symptoms came back very strong before the second surgery, I had a syrinx so big that I was losing feeling and mobility of my right side. I haven't had much pain or Chiari symptoms and they have me info on how to differentiate regular pregnancy symptoms from Chiari symptoms so that should be helpful. I was really glad to hear that they can monitor the ultrasounds to find out if the Chiari develops in the baby, I do still plan on doing scans to verify around preschool age just to be sure. I'm hoping the pregnancy doesn't trigger any symptoms, I'm a little uncomfortable with massages so I'm not sure if I would do that lol but I'm sure I'll need to find something if the symptoms do make a come back!
Ju
Wow they caught yours early! I was 37 when they figured out what was wrong with me. I had c-sections with my older 3 daughters because my labor doesn’t progress so I don’t dilate. They high risk Drs have been to ultrasounds watching her spine and skull form and everything looks perfect! No defects! My right arm has been going numb and my fingers tingle and fall asleep more since Ive been pregnant. I started getting massages at least once a month and that is helping soo much! I definitely recommend it! She works on the scar tissue in my neck and down my spine and hips! AMAZING!!! How did they catch yours at 14? What symptoms did you have?
Ni
I was diagnosed when I was 14 and had my first surgery a few months later, I had a second surgery when I was 21. I'm only 10 and half weeks so we plan on monitoring my ultrasounds to see if the baby may have it. I'm choosing to have a csection to avoid any complications as well. It's very stressful but thankfully my doctor has had pregnant women with this condition before so she has a basic knowledge of what we need to do! How did they clear your baby girl of it??
Yes I have a chiari, it grew much larger after the delivery of daughter in 2012. They said it caused a cerebral spinal fluid hemorrhage. The pain was as if I was being stabbed in the back of the head. 2 days in the hospital 👎🏼👎🏼
Ju
@Heather have you had the decompression surgery at all?
He
I had a c section
Ni
That's so stressful!!! That's why I'm choosing the csection, I never want my symptoms to come back, I don't want to miss anything with the baby and I don't want to add any stress for my husband or family. I'm so sorry you went through that! Are you better?
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