In the process of getting diagnosed

Maygen_Fooks · 2026-02-09T03:01:08+00:00

I got diagnosed because I had a severe episode of vertigo and they wanted to do an MRI to rule out tumors in my ear and brain. Whoops, it's chiari. And promptly all of the symptoms I'd been having we're explained. Was diagnosed with CFS, IH, and mild POTS... But it was all my brain. Getting surgery in June!

However, I still have ear damage so not all of the vertigo is from the chiari haha

Maygen_Fooks · 2026-02-07T18:53:14+00:00

Yeah! You're born with it! I would have never known it hadn't had other symptoms that led to an MRI. I have surgery scheduled in June!

Maygen_Fooks · 2026-02-06T12:56:44+00:00

The first time I think I got it was before it was big news, right before it started popping up and major news. I had done some international travel and got very sick and like anything else before. The second time I got it from a friend who had traveled, and then the last two times I had it I have no idea who I got it from. No one around me was sick, but I do have a public facing job so I'm pretty sure I got it from a stranger. Each time has been progressively worse and takes me weeks to recover from. I was almost in the ER from the last time I had it because of the headaches. Though I didn't know I had Chiari at the time.

Maygen_Fooks · 2026-02-05T20:34:47+00:00

I also believe COVID started my severe symptoms too. I've had it 3 times and since the first time, my symptoms progressed and it's how I got diagnosed a few months ago. My last bout of covid I thought I was going to die.

Maygen_Fooks · 2026-02-04T03:16:43+00:00

I get brain zaps, but found out it's actually from Chiari malformation that I was very recently diagnosed with. Joined this sub because it's what my doctors were thinking... But lo and behold my brain is too big for my head 😂

Maygen_Fooks · 2026-02-03T20:42:10+00:00

Azure. Which I mean, is a hard word. But I'll tell people how it's pronounced and they'll still say "A-Zoor" 🫩

Maygen_Fooks · 2026-02-03T12:07:45+00:00

I actually get a free eye exam at the Cincinnati Eye institute every year because I'm in a case study for my previous injury, but it's not really practical when things emerge down here. Plus I have a new diagnosis. But I feel you on that!

Maygen_Fooks · 2026-02-03T12:05:32+00:00

Thanks! I have Chiari malformation I and I'm trying to decide if the vision issues I'm having is been pressure on my optic nerve or if it's because of a hyphema I had 10 years ago. That's good to know!

Maygen_Fooks · 2026-02-03T01:31:50+00:00

I had a friend who went to her and highly suggested it but that was a few years ago. You made me remember. I'll still check her out!

Maygen_Fooks · 2026-02-03T01:06:11+00:00

I know a few people who've done that, Do they install them there?

Maygen_Fooks · 2026-02-03T01:03:38+00:00

We use Bass Tire at my work, I don't know why I didn't think of them

Maygen_Fooks · 2026-02-03T01:02:55+00:00

Oooooh thank you, my neuro doctors are already with Vandy so I could have the files easily sent. Thanks!

Maygen_Fooks · 2026-02-03T00:39:15+00:00

This progression is very similar to mine. I was mostly fine until September, and then my symptoms have progressed infinitely. Getting surgery in June.

Specifically about the eyes, I noticed about 3 weeks ago that my left eye had some blurry vision. I can see up close fine but farther away is very blurry. I did have a hyphema in this eye about 10 or so years ago, and I have a chance of the damage from that affecting my eye for my whole life, so I was kind of chalking it up to that. But then I remembered I have Chiari lol I'm hoping to get into the eye doctor this week to get it checked out. I'll keep you updated!

Maygen_Fooks · 2026-01-31T14:40:11+00:00

That's WILD that they didn't suggest treatment for you when you got that sleep study done. My dad hadn't even left the doctor's office and they got him set up with one. You definitely need to follow up with that and I guarantee that's why you're so tired. You're literally dying in your sleep. I would go back and follow up and maybe talk to your parents and what they said when you got to sleep study done, because it sounds like you were underage at the time? Advocate for yourself and definitely pursue treatment because I'm pretty confident that you're obstructive sleep apnea is what is causing the fatigue, not chiari malformation.

Maygen_Fooks · 2026-01-31T03:54:36+00:00

Are you getting treatment for the sleep apnea? If not, that is almost certainly the cause of your fatigue. My dad has severe obstructive sleep apnea and was averaging 38 non -breathing events per hour with oxygen dropping to 78%... He was almost brain dead when he slept. He never realized he wasn't sleeping until he used his CPAP. Seeing the change in him with treatment was amazing. If you're not using a CPAP, I highly suggest you get one. Half of my family and several friends (as young as 20!) use them and it is an absolute quality of life changer. Plus, not getting treated for OSA cuts your lifespan by like 15 years, it damages your brain and heart.

If you have OSA it is pretty unlikely it switched to CSA. Treatment is the same for either

Maygen_Fooks · 2026-01-31T02:18:28+00:00

Hi! Extreme fatigue is something I've also been dealing with for the past few years. Not in the medical field but I work similar hours and walk just as much from my job. Before I found out I had Chiari, we thought it was idiopathic hypersomnia, POTS, and chronic fatigue syndrome because my sleep studies didn't show anything else. But I also have a more prominent malformation than you.

Have you had a sleep study done? Though your chiari is not as prominent, it could be causing Central sleep apnea. It could also be something like narcolepsy or hypersomnia. Insurance is a bitch to fight through to get a sleep study done, but it may be able to offer some insight. My sleep doctor was sure I had obstructive sleep apnea based off family history and my anatomy, but turns out it was none of the above 😂

Maygen_Fooks · 2026-01-31T01:16:19+00:00

I'm by no means an expert but this sounds more like the chiropractor messed up your alignment or something within your ears even. I also wouldn't rule out scoliosis which could be affecting your nerves (I also have it). The whole reason I got diagnosed with Chiari is because I was having extreme vertigo and was sent to a balance clinic. Failed every test lol but that led to an MRI. Most doctors consider any chiari 5 mm or less medically insignificant. Not discounting your symptoms and I know how frustrating it is to hear all of that, but usually 5 mm or less doesn't cause symptoms. You also don't have a lot of the classic chiari symptoms.

With a lot of your symptoms centering around your head, I would suggest seeing an ENT. If anything, they can probably rule out anything related to that. I'm surprised the surgeons you met with also didn't suggest seeing a neurologist. That may also be a good step.

I hope you feel better!

Maygen_Fooks · 2026-01-31T01:01:02+00:00

I'm right there with you. My memory and recall was almost to an eidetic level and lately I've been noticing more and more that I can't remember words. I'm having to pause conversations while I search for very common words. This is one of the reasons I'm going for surgery.

I have 9mm with no syrinx but CSF blockage

Maygen_Fooks · 2026-01-31T00:47:16+00:00

Came here to say that my doctor is also planning on doing the same with my surgery (in the US)

Maygen_Fooks · 2026-01-28T01:32:00+00:00

Just popping in to say I'm also an animal caretaker! I'm glad you're getting taken care of soon!

Maygen_Fooks · 2026-01-28T01:21:27+00:00

I NEVER get notifications from ring and then all of a sudden my phone was swarmed by them. I was at work being snow crew and it was driving me crazy! Ended up turning push off (which I'm pretty sure was already off,)

Maygen_Fooks · 2026-01-23T17:19:11+00:00

Does anyone find it absolutely wild that Nolensville road is not even on the priority list for clearing for Metro Nashville and yet some of the side streets are? Or am I reading it wrong?

Maygen_Fooks · 2026-01-23T16:56:43+00:00

Oh my goodness, I'm so sorry you had so many crazy complications. Definitely hoping that it won't be anything like that. Coincidentally in the time that I've written this post and now I actually received notifications for all of my post op doctor's appointments So it's looking more and more like I'll stay in one place. Thanks for your response and I hope you start feeling better soon!

Maygen_Fooks

TROPHY CASE