Newly dx Chiari

Hi everyone I’m new to the support group. I’m 30 years old and was recently diagnosed with a 9mm herniation. Fortunately I had an MRI of the brain a couple years ago that did not show a Chiari malformation so mine would be classified as acquired I guess. Still bouncing around like a pin ball trying to find a qualified NL and NS that knows more about Chiari than I do (it’s sad when a doctor knows less about your condition than you) anyway just wondering if there’s anyone out there with an acquired Chiari and how you got it.

Hello, I’m glad you found this site, it will be very helpful to you. How do you think you got the herniation? Swelling of the brain from a virus or concussion, whiplash from an accident, or something else? I read that many people discover their Chairi after whiplash or a car accident. I have had whiplash twice in the last 4 years. I have had symptoms since a child, but they become severe at about age 30. And worse after being rear ended. Tina from WI

Hello Tina to answer your question I work in a physically demanding field and am fairly certain that this was acquired through work. I have been searching the internet and have yet to come across any articles or fellow Chiarians that share this same experience. I truly feel alone for the time being but hopefully I can bring forward others who have had clear MRI’s in the past and now suddenly are diagnosed with Chiari.

Hi and welcome. I was diagnosed almost 3 yrs ago after I fell and knocked myself out on the Television cabinet. A CT scan identified Chiari 16mm which was not identified 10 yrs prior on a CT (I can’t have MRI scans). I’ve not been able to find a huge amount of information on acquired Chiari. I’ve asked Drs however they are a bit none committal. They have said maybe the Chiari was present prior but the initial CT scan didn’t quite show the area and impact of the fall has forced the brain further.
Regardless it’s very debilitating and my symptoms continue to get worse. I’m in the process now of having the device that stops me having MRI scans removed so I can access the necessary scans. It feels like such a long process to get this done and there is no way forward until that happens so I’m in limbo ATM.
I try to remain positive and focused on making each day count which can be very challenging at times and I’ve called on the support from the very special people in this group

Hi there! I’ve often wondered if my Chiari was acquired. I was in a bad accident 14 years ago with whiplash and a closed head injury that I had trouble healing from. About four or five months after the accident, when I wasn’t improving, I went to a neurologist who did an MRI and found the Chiari. I was fairly asymptomatic at the time. He was of the opinion that I was probably born with it, and obviously, the MRI is the way to diagnose, but I’d never had one before. I have a second cousin with Chiari, so it’s also possibly genetic for me. And, I did have elevator induced vertigo all my life, which is probably related to the Chiari. So who knows? Good luck in finding a helpful doctor. Surgeons always know more about Chiari in my experience, and even if you aren’t ready for surgery, it’s a great idea to establish with one you like to monitor the Chiari for if and when the time comes you want to proceed with a decompression. For me, it took more than 14 years after being diagnosed for it to come to the point where I’m positive the surgery is worth it. (And honestly, I probably should have done it a year ago, but I was trying to achieve maximum medical management first.) Good luck!

I reading you post and you said you was told you had chiari after a car accident and your health started to deteriorate… Well I had a car accident Dec last year and was told by many doctors that I have type1 at 12 mm and my symptom are all over the place driving me bonkers my question is what made you decide to do surgery how was surgery how are you now and how was your health deteriorating? Sorry its a lot😔

Chiari Malformation is usually congenital, which means you were born with it. Unless you acquired it by some kind of accident or something. I am not sure how you could have possibly just acquired it. I had to have decompression surgery because of two syrinxes that I have. Although, one has greatly reduced since surgery, that being the cervical one. Point being, it is not a surgery you want to get if you can avoid it at all costs.
I don’t think you will find one in the US who would do it just for headaches either. My guess is, whoever ordered the first MRI probably did not notice the Chiari. I would look into getting MRI’s of the spine to check for Syringomyelia. They are usually done in separate sections, so see if you can get an MRI of the whole spine.
There are things that Chiari causes which create a domino affect. Because I was 40 when my Chiari was diagnosed, it caused my whole spine to be pushed down and deteriate causing Syringomyelia for 40 years. So glad to hear of little ones getting diagnosed quickly that could could possibly avoid these issues. I have never heard of acquired Chiari and my best guess is that first doctor or that doctor did not notice it on the initial MRI.

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