Arnold-Chiari Malformation Support Group

Arnold-Chiari malformation, sometimes referred to as 'Chiari malformation' or ACM, is a congenital anomaly of the brain. Arnold-Chiari Malformation II occurs in almost all children born with both spina bifida and hydrocephalus, but ACM I is typically seen in children and adults without spina bifida.

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ANGIE1990 05/24/2018

Hello everyone, I'm Angie. I'm 27 and I had an MRI done recently due to experiencing extreme pain in my skull. Turns out i have chiari 1. Over night my skull and bones in my face expanded, which has caused my eyes to become more wide set. My jaw has also enlarged . I suffer with nausea, constantly being thirsty and hungry, terrible brain fog , trouble breathing , constant ringing in ears, etc. My doc referred me to meet with a neurologist . Until 3 months ago I hardly experienced any sx. Not sure why this would all of a sudden become a problem, but from what I've researched it's entirely possible. Anyone else experiencing similar sx? How do you manage?

sed26 05/31/2018

Hi Angie, my name is Stephanie, I’m also 27 years old, I have Chiari 1 too I was diagnosed after getting into a bad car accident last October. I know everything that’s happeneining with your body may seem really strange but all the symptoms you’ve been having are completely normal. After my accident my mouth was crooked all of a sudden and my speech was slurred, I started blacking out and fainting. I would definitely follow up wit a Chiari Specialist or a Nurologist/Nurosurgeon that has experience with other Chiari cases from what your saying the symptoms your having are having affecting your life ( which is not good). Ive learned a lot since They found my Chiari , that part of the brain controls a So many different things in your body (like your motor functions, your balance,speach ect) I actually just got out of the hospital a day ago, my symptoms were bad so I had to do decompression surgery on May 25th. I know I used to read comments from people all the time when I first found out and than as soon as they mentioned Decompression surgery I would just stop reading. But especially if your having trouble breathing at night. I’m not sure what area you live in but I have a great Nurologist I could refer you too. Surgical is all up to you the patient no one will force you into doing anything you don’t want to do

ANGIE1990 05/31/2018

Thanks Stephanie for responding. It's so weird that I have had this my whole life and I'm just now starting to experience sx. I was also told that some of my sx seem like they could be due to acromegaly, a rare hormonal disorder that causes bone growth. I do have an appointment scheduled to meet with a neurologist in a few months. I live in Oregon. Where are you living? I'm sorry to hear that you were in an accident and I hope you have a speedy recovery from your surgery!

cliffe 07/02/2018

Hi my name is lee and I am 40 years old I had chiari malformation type 1 op in 2013 because of bad heads over 4 years getting to the point carnt live a normal life. In and out of hospital in 2 days after the op better rest at home. Walking with in 12 hours slowly, but after a week I could not walk and I was in more pain I just sat in a chair all the time and could not move, 6 weeks later I had a VP shunt put in and took my time building up my strength .I was on 22 pills a day before this.Thats all the bad stuff in 6 months later I never had any pills for over 5 years I have my bad days but so does everyone I got my life back going to the gym 4 times a week and very active. driving and full time job. Dont read everything on the internet if you want to no anything your GP and consult is there for you.
All I can say is a op is the last thing to do it took me over 10 months monitoring me going for mri scans and consult talks the no rush as we are not doctors they no best after all this is brain op. The op is there for you to help you have a better standard of life and it did for me.

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