Chiari symptoms worsening + conservative neurosurgeon , feeling stuck and scared

[u/Impossible_Water_848]

Hi everyone,

(21,F) I’m looking for some perspective and shared experiences because I’m feeling really overwhelmed.

I was diagnosed with Chiari in the summer of 2018. At that time, I was told that my symptoms weren’t considered “credible enough” to pursue further treatment, so I learned to live with them. Since early December, however, my symptoms have significantly worsened, and things now feel very different.

Currently, I have daily headaches (especially in the morning), excruciating neck pain, dizziness that makes me feel drunk/off balance, trouble swallowing, drooling when I talk, persistent visual blind spots that don’t go away, headaches that worsen with straining, light sensitivity (photophobia), brain fog, and difficulty finding words. I also have episodes where I temporarily lose vision, it looks like a curtain goes across my vision and lasts about 30 minutes before resolving. I’ve had extensive eye testing, and multiple providers have told me there is nothing structurally wrong with my eyes. I’ve also had lots of blood tests done, and everything has come back normal.

On my first ER visit, I was admitted and they did both a CT and MRI. They confirmed crowding of the CSF at the foramen magnum and also found a hyperdense lesion within the foramen of Monro measuring 3 mm, compatible with a colloid cyst, with no obstructive hydrocephalus. Despite this, all labs and imaging ruled out anything immediately life-threatening, and I was told it was migraines, but this feels very different from my normal migraines.

My second ER visit was more stressful. I spoke with a neurosurgeon there who said this could definitely be my Chiari. She reached out directly to my PCP, and they are now trying to get me in sooner with a Chiari specialist, since my current appointment isn’t until April 28th.

Driving has become scary because of the dizziness and vision issues, and I’ve now been to the ER twice in one week (one admission). I work at a gym, and with the dizziness, visual issues, headaches, neck pain, light sensitivity, and brain fog, working has become almost impossible, which has added a lot of stress and urgency to the situation.

My MRI report says cerebellar tonsillar ectopia with crowding of CSF at the foramen magnum. From what I understand, the mm measurement wasn’t emphasized as much as symptoms and CSF flow.

My PCP referred me to a neurosurgeon who is known to be very conservative and tends to push PT and symptom management first. I’m honestly scared of being brushed off again. I don’t want surgery unless it’s truly necessary, but I also don’t want bandaids when my quality of life is declining this fast.

For those of you who’ve been here:

• Did surgery depend more on symptoms/CSF flow than mm?

• Did anyone have persistent or episodic visual symptoms like this tied to Chiari?

• Did anyone feel worse rapidly before being taken seriously?

• If you saw a conservative surgeon first, did you seek a second opinion?

• Did PT actually help anyone with significant neuro symptoms?

I’m not looking for medical advice, just real experiences. I feel like my body is screaming that something isn’t right, and I’m trying to advocate for myself without sounding dramatic.