What a pain in the head

Welcome Greetings and Introductions
1

Hi all - New here and New to Chiari. Here’s my story and a few questions I hope you all can help with.

I’m a 34 year old, a middle school orchestra, and mother to an awesome 3.5 year old little boy.

2001 - diagnosed with Fibromyalgia &TMJ as a college student. At my worst I was in a wheelchair for 6 months with limited mobility - but that was back in 2004 and I’ve been able to manage most of my symptoms since then (with the occasional flare up of course) but i know my body well enough to know what will cause flare ups and try to avoid those things.

Last year (actually 1 year to the day) I went to the ER after a near fainting episode at school. This lead to doctor after doctor of uncertainty and random guesses of diagnosis. First they said I was dehydrated (even though my blood work was perfect). Then they said maybe a dysautonomia issue. Then vertigo… Then then after about 2 months we learned I had a chiari 1 malformation - about 5.5 to 6 mm.

My main symptoms are dizziness (more of an instability rather than room spinning vertigo), head pain (in the back in a smile shape), hoarseness, nausea, weakness, muscle twinges/shaky, incontinence, brain fog, blurry vision, and frequent orthostatic issues. (plus about 15 other smaller things)

I was a little better in the spring and then it hit hard back in July and everything is only getting worse.

I’ve seen a few neurologist and settled on one who really listens and looks at the big picture. He’s not quick to jump to conclusions and is looking at 4 diagnoses:

  1. Chiari I (with no sign of syrinx)
  2. POTS
  3. a Vestibular Disorder
  4. Hypersomnolence

So here’s where I’m at now
My symptoms vary in intensity from day to day but are always present. Sometimes its extremely hard or near impossible to do my job. I have a tilt table test scheduled for two weeks from now to officially diagnose the POTS and follow that piece of the puzzle. I also have an order to schedule a CINE MRI

But I did see a Neurosurgeon to get their opinion two weeks ago. He spent about 15 minutes with me (for a 2 hour time slotted appt). :frowning: He said my Chiari is too rounded (not peg like) to be causing my symptoms and pretty much sent me on my way without really listening to me or looking into my symptoms.

Here are my questions:

  1. Does the shape of malformation matter?
  2. Does anyone know what it means when you lay down perfectly flat and it feels like your head is about to explode from just feeling full? that has happened to me for years and I’ve gotten different answers from 3 docs:
    -Neurologist said it wasn’t blood pressure, was probably CSF
    -Neurosurgeon said it couldn’t be CSF, was probably blood pressure
    -Arrhythmia doc (who is doing the tilt table test) said it couldn’t be blood pressure, could be CSF or related to a vestibular disorder, and recommended I get a second opinion from another Neurosurgeon.
  3. does anyone hear a noise when you lay down like something swizzling down the back of your neck? could this be CSF? neurologist says no - but i don’t know what it could be.

Thanks for your advice! I look forward to looking around the site more and meeting some of you - it’s a lonely process without someone who is in the know.

:slight_smile:

2

I do occasionally get like my head is full and I do believe it’s related to Chiairi because it’s blocking the CSF to flow properly. It depends how your Chiairi is blocking the flow of the CSF to the rest of the body. Wishing you the best.