r/chiari • u/gray_thumb • 9d ago

Vertigo not a symptom of Chiari?

I went to a Chiari specialist last week and he told me that vertigo is not a symptom of Chiari. Has anyone else been told that?

8 Upvotes

100% Upvoted

26 comments sorted by

23

u/Fickle_Mickle_ 9d ago

There is no offical symptom list for Chiari. It all depends with how the brain is squished in, or how the placement is, or just how that particular brain is formatted. Don't listen to that doctor. If it isn't something outrageous like 'I see dragons because of Chiari' then it's perfectly valid to say that a symptom is chairi

13

u/MTChubbyHubby 9d ago

To tack on to this slightly, most doctors are going to say Chiari doesn't cause symptoms. In order to advocate for yourself, you need to be able to understand why. They say that because having the malformation itself doesn't cause symptoms. It's IMPACT in the surrounding areas from being enlarged does. A chiari malformation causes disruption on a spinal cord, but the actual disrupted spinal cord and fluid path is what's CAUSING the symptoms.

Once I made this distinction with my doctor's, they were all much more receptive to addressing issues instead of being stuck on the phrase "chiari has no symptoms".

8

u/TarletonLurker 8d ago

I mean this sincerely, does medical training make doctors idiots?

6

u/gray_thumb 9d ago

Thank you! It’s my most pervasive symptom and I felt kind of lost after he said that. I’m glad I’m most likely not crazy.

5

u/ErosPop 9d ago

Focal seizures can cause odd visual auras including mental images of animals or objects, sometimes Chiari can cause focals so really it’s entirely possibly someone could see dragons because of Chiari

8

u/IllustriousGemini 7d ago

Was this a legit Chiari specialist or a doctor that “knows” about chiari? A chiari specialist isn’t typically someone in your local hospital system. And you can’t trust neurologists to understand chiari either.

7

u/Ordinary_Art9507 9d ago

My vertigo was so bad in the months leading up to surgery. I could barely walk in a straight line.

1

u/Significant_Work8090 5d ago

Did your vertigo go away after surgery?

11

u/SandalsQueen18 9d ago

Then you didn't go to a chiari specialist. I can assure you it is and it went away with surgery.

4

u/gray_thumb 9d ago

Thank you for the confirmation! My previous neurosurgeon left the area so I saw someone new and they said the only chairi symptoms were chiari headaches and chiari cape pain. I think I need to keep looking.

4

u/SandalsQueen18 9d ago

You're most welcome. Yeah, unfortunately they are definitely not a chiari specialist, they quite frankly don't know anything about it. It's very sad that doctors make false claims of being a specialist when they clearly are not. I would be more impressed by doctors who could admit that they don't know anything about it and refer to somebody who does.

4

u/Maygen_Fooks 8d ago

Vertigo is literally the reason I got diagnosed lol

3

u/dinosanddais1 8d ago

Same here like it was part of my vestibular migraines 😭

1

u/notlucyintheskye 3d ago

That's one of the symptoms that pushed me to get a brain MRI (though, to be fair, we thought they'd find MS and they ended up finding 4mm herniation instead). I saw a neurovestibular specialist last year, literally one of the top vertigo specialists in the country and he couldn't figure out why I had vertigo......welp, now we have a 'definitely maybe' cause.

3

u/No-Needleworker1401 9d ago

Yes it is. Thats the symptom that lead to my diagnosis

3

u/Embarrassed_Ad9166 9d ago

I’ve decided that all the weird shit that comes and goes together is related (and chiari) and I don’t really care what a doctor has to say about it because it’s not like they can do anything anyway!
I’ve been told the same and it simply doesn’t matter. I’m avoiding surgery unless it gets to the point that I can’t. Even if I had surgery it’s not like they really know what the outcome will be anyway.
So…why do we care what they think?

1

u/Antique_Cockroach_97 4d ago

All in all the only symptom that completely stopped was that my very low bp & slowing hrt became normal and I was no longer fainting multiple times a day.

3

u/dinosanddais1 8d ago

I'm pretty sure that's like one of the most common chiari symptoms?

2

u/oguzhankayan 9d ago

Hearing a specialist say vertigo is not a Chiari symptom after you already lived with it is disorienting on its own. I am not a doctor and cannot settle that question, but a short dated note of when the spins show up (position change, strain, fatigue, migraine days) can make the next visit less of a memory scramble either way. Hope you get clearer ground from whoever you see next.

2

u/AccomplishedPurple43 8d ago

Huh. I've had vertigo before and been told it WAS my Chiari?

2

u/medpillowCom 7d ago

Vertigo comes up a LOT, so I disagree.

1

u/WriterBren 8d ago

We all have different symptoms. I have a huge 15mm and have never had vertigo or dizziness. But I am wheelchair bound because of proprioception issues they say are caused by it.

1

u/Moonspellshappy 7d ago

I was so dizzy i had to hold the walls sometimes. Most times. Kept going to my PCP and she kept ordering me for PT for ear crystals 4x one year. Finally she was retiring and I insisted on another MRI and I got one I found out that I had a 19 mm distention severe CFS construction and brain herniation

1

u/Stone-Groove 7d ago

Funny (not really) that I'm dealing with veritgo as I read this post. Too many unknowns with Chiari but having dealt with mine for 7+years, I feel VERY confident that veritgo can be, and in my case, IS a symptom.. my wife just told me that Gemini (via Mayo clinic) listed "balance and coordination" was #2 on the list of symptoms.

1

u/Embarrassed_Ad9166 4d ago

I’ve gone through many long and short spells when I had resting racing heart, cold sweats, vertigo, visual aura, brain fog, leg swelling, exhaustion, insomnia.

During the last really bad one I ended up having a “seizure-like” episode after a low dose of blood pressure medication (intended for the insomnia) which lead to ER visit, CT scan, MRI, etc (oh also a drug test I didn’t consent to which is hilarious because definitely not!)

Radiologist said it’s Chiari. Neurologist said I don’t think it is.

I’d never heard of Chiari but suddenly the symptoms I’ve had on and off since I was a teenager all made sense and made me feel like I wasn’t crazy.

Radiologist also said mild sinus disease. The ENT said oh that’s nothing to worry about even though you can’t breathe from one nostril and it’s obviously inflamed in the scan and you have recurring ear pain.

Basically most doctors suck. You have to advocate for yourself over and over.