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My Chiari Story

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I was diagnosed with a chiari malformation in October, 2006. My brainstem had herniated into my spine due to overdrainage of my shunt. My CSF was draining too much and too fast and ultimately caused my brain to sag, which led the brainstem to fall into the spine.

I started to notice something wasn't right at first, when my right eyelid began drooping. It just did not want to stay open all the way. Then I began to feel weak, tired, confused, and have balance issues. I also developed a pain on top of my head that felt like someone had whacked me in the head with a shovel. It was a small area on top of my skull at first, and with each passing day it seemed, it grew until the entire top of my head felt painful, to the point of not being able to sit up or be upright at all - I had to stay in the lying down position for relief.

I began spending the majority of my day in bed. I would get my kids ready for school as quickly as possible, then head back to bed. I could only eat in spurts, sitting up to take a couple of bites, then quickly lie back down. I called my follow-up neurosurgeon every week, begging to be seen, not knowing what was wrong with me. But he refused to see me and instead, sent me to my internist, as well as a neurologist. But no one knew what was wrong. They suggested I see my neurosurgeon, fearing there was something wrong with my shunt. But again, my follow-up neurosurgeon refused to see me.

I finally made my way back to Phoenix where my original surgeon for my cyst and shunt was located. After an MRI, I was diagnosed with brain sagging and an 8mm chiari. They turned my pressure back up on my shunt to allow more fluid to collect around my brain in hopes of "floating" my brain back up. But over time, although this helped a little, it would not be enough to get my brain completely up. I still have the 8mm chiari and still live with chiari-symptoms.

I am now, almost four years after my chiari diagnosis, looking into surgery to correct this. I am looking to go to the Chiari Institute in New York for repair of the chiari. I will know in about a month as to whether or not they can help me. The concern is the fact that the brain is sagging. My neurosurgeon I see at Duke will not perform the surgery because he is afraid he will cause the sagging to worsen, so he recommended the Chiari Institute for me, where they deal with all kinds and degrees of chiaris. I have my fingers crossed that they can help me.

If I had to choose which symptoms bother me most with my chiari, I would say the pain I can get as well as my balance issues and dizziness. I would also say the fatigue I get with it is very difficult. I do not have close to the energy I used to, not even the energy I had just after my cyst fenestration. I simply feel wiped out all the time.

I understand that they will make the opening at the base of the skull larger to make room for the herniated brain stem, as well as remove C-1 to possibly C-3 of my spine. They will also add a type of mesh to the base of the brain that keeps the brain stem up more, in the skull where it belongs, and is not allowed to herniate as much. All of this is fine with me, so long as I am no worse than I am now, but instead, hopefully better than I am now.

Everyone experiences different symptoms with their chiari, and there are even differences in the degree of symptoms related to the level of herniation. This means that someone can have a slight herniation, a couple of millimeters, and have very debilitating symptoms, whereas someone else may have a more drastic degree of herniation and may not have near as debilitating of symptoms.

I will keep my readers updated as to the outcome of my hunt to repair my chiari.

Add a Comment5 Comments

I am sorry to hear that you went through this or are still suffering. I too, was diagnosed with a Chiari Malformation in 2008 and had surgery less than two months later in November. It has been 5 years now. I have progressed really well. I had an amazing neurosurgeon in Mississippi, I could not have come out of it as well as I did without him. Please hang in there. Ill pray for you. ~Sandra

January 11, 2013 - 10:53am
EmpowHER Guest

i had this disorder my self i found out that i had chiari malformation when i was in the sixth grade.i had no symptoms of the disorder until i was about 15 years of age...i had the surgery when i was in the 8th grade after all of the pain i still heve problems with the chiari even though i don't have it anymore

April 20, 2010 - 8:35am
EmpowHER Guest
Anonymous (reply to Anonymous)


I am sorry to hear about your chiari. It is strange, the differences in people and when people begin to get symptoms and at the different stages, or degrees of the chiari. What kind of problems do you still deal with?


April 23, 2010 - 12:01pm
EmpowHER Guest

I wish you all the best! You'll be in good hands at TCI. I had my Chiari decompression there, as well as a two-level diskectomy/fusion, and a section of my filum terminale to detether my spinal cord. I am very happy with the results.

April 14, 2010 - 11:30pm
EmpowHER Guest

I would encourage you to keep sharing your Chiari story ~ I started a blog to document my chiari journey when I was diagnosed back in September 2006. I had the decompression surgery in Dec 2008. I feel a whole lot better, but of course there's no cure for chiari and I still deal with symptoms, but they are more manageable now. Hang in there ~ Lacie

April 14, 2010 - 5:51pm
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We value and respect our HERWriters' experiences, but everyone is different. Many of our writers are speaking from personal experience, and what's worked for them may not work for you. Their articles are not a substitute for medical advice, although we hope you can gain knowledge from their insight.