New here...low lying cerebellar tonsils

General
1

Hi everyone...first I want to say thanks for the welcomes already from just coming here.

I wanted to share some of my story, and hope that someone can help me out. A little background: I'm 25, college student, married mother of 2. I'm currently seeing a neurologist in Denver. I was actually referred to them because I get "attacks" where objects in my peripheral vision appear closer (strange, huh?). The neurologist ordered an EEG & MRI of the brain to "rule out" other conditions. He said that everything was normal, but I got a copy of my MRI results and it states that I have low lying cerebellar tonsils, but without evidence of a Chiari 1 malformation. I've been doing a lot of research, and from what I understand is that it's still considered Chiari, right? I know my neurologist will brush it off if I even bring it up to him. At my last follow up appointment, he prescribed me Propranolol to prevent migraines which landed me in the ER with chest pains so I stopped taking it. I was only on it for 3 days, so I don't know if it would have helped with the migraines had I been able to use it longer. All it did for me besides the chest pains was make me feel severely dizzy and weak. He also to take B-12 & Magnesium which I've been taking everyday for the past 2 weeks.

My symptoms that I get:
Headaches, mainly behind my right ear that feels like pressure

Sometimes the headaches are in the back of my head, like I've been hit with a baseball bat...OUCH!

Headaches pretty daily, especially after waking up in the morning, worse with laughing, etc

Right eye pain/pressure

Dizziness/vertigo

Right arm often feels weak, like it's being weighed down

Tingling in the right arm/hand

Husband says sometimes I slur my words

"Drunk feeling" (Mental fog)

Do these symptoms seem like they would be from Chiari?

I live in Denver, and I've researched Dr. Oro at the Chiari Care Center here, but I'm not even sure if I could get an appointment without having the "Chairi 1" Dx.

Any help would be greatly appreciated. Thanks! :)

2

Welcome! I too live in Denver…call Dr. Oro! Awesome man and surgeon. They’ll schedule you. Take all your films with you! Good luck!
Monique

3

You should definitely call Dr. Oro for an appointment! I have heard a lot of wonderful things about him…You’re lucky to live so close:) Please keep us posted:)

4

I can't agree more - don't stop seeking help. Call and take the films. Don't give up on the meds either. I took that same medicine years ago and it worked for a while and then stopped. There are lots of medicines to try and this is just one.

I hope to hear back after you get help!! :-) Praying for you!

5

Thanks for the quick replies! I'll definitely call Monday and see what we can do. Does anyone know how long it usually takes to get in to see him?

I have another follow up with my neuro on the 27th, is there any additional testing that maybe I could request to be done before hand that would be beneficial?

6

Hi my daughter was diagnosed with Chiari she is 20, she was getting headaches and describes them like you do. We went to a neurologist and all they wanted to do is give her meds. I took her to a neurosurgeon at Beth Isreal in NYC and he suggested surgery so be prepared for that, but I would def. go to a neurosurgeon. Good Luck!!

7

Thanks everyone. I called Dr. Oro's office today, and they told me to fax my MRI report and then they'll call to schedule me an appointment.