Chiari Online Support Group

New Member - recently diagnosed!

#1

Hello everyone! I was recently diagnosed with Chiari Malformation I by accident. I just gave birth (to a wonderful baby girl) and right after that everything went downhill. In the first few days after giving birth, I was so disoriented, constant headaches, insomnia, vision disturbances, tingling in my face, weird sensations in my hands and feet, vertigo symptoms. I got a CT for the headaches and they noticed my chiari and said “not to worry, you were born with it, and a lot of people don’t have symptoms.” I just remember not feeling myself at all and all I wanted to do was enjoy my new baby girl.

well eventually some symptoms went away and now I feel I would say “mild” symptoms. Tensions like headaches, vertigo symptoms(dizziness, weird balance, ringing in ears, can hear my pulse in my ears, they feel really full like they need to pop), neck ache, and vision disturbances. The vision is what bothers me the most. I can’t explain it. I don’t have blurred vision or double vision, it’s like my eyes are hypersensitive and just different than before.

I have had two MRIs done, I have a 7mm herniation. I saw a neurosurgeon (who specializes in chiari) who isn’t bought that my symptoms are completely from chiari and we will do the “watch and wait” to see if anything gets worse. I feel very down most days, I feel like I’m consuming my thoughts and life freaking out about my symptoms and what will happen next. I keep telling myself that I won’t ever have a normal life again. some days are good and some days are bad… lately I’ve been having a lot of bad days. Any advice and/or similar experiences?? Thank you!!

#2

I’m in a very similar situation with very similar symptoms. I also have a baby boy that’s 13 months old. I am in the process of seeking a 2nd opinion and scheduling surgery. My bad days are outweighing my good days. I can let you know my results after surgery so you can have some insight. I’ve had pain sence I was a kid and just found the chiari malformation this March. So many of my symptoms make sense now. Congratulations on your baby girl.

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#3

I don’t think the doctor is wrong for wanting to wait for a bit to rule out other potential factors.
Decompression does help tremendously, but Chiari will take some getting use to regardless.
The central nervous system is complex and weird to come to know when odd symptoms surface; sometimes out of nowhere.
Recovery time after having your baby is important; let that happen.
Document your symptoms and even keep a journal because as you progress in taking care of the Chiari those notes act as a great reference point when talking to a physician.
Using this Website is a great way to feel less alone by developing commonality with other people that have traveled the same path.
Stay away from consuming caffeine or any other product that will speed up your system and some nutrients can cause this same problem (for me it was niacin).
I check this site weekly; until then best wishes!

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