Contemplating Surgery and Getting Mixed Messages
I was recently diagnosed with a Chiari malformation after experiencing migraines for about a decade. More recently, I'm experiencing the pain when I laugh and cough and constant pain in my eye and the back of my head and neck. As well as visual disturbances that are new . The neurologist that I saw was extremely helpful, referred me to another neurologist and a neurosurgeon. They did two MRIs which confirmed the Chiari. This was both kind of scary, as I didn't know what this was and it's being related, but also extremely validating and that there is this thing that was like a one for one for a lot of these symptoms that I'm experiencing.
But then I was in a situation where the surgeon I was supposed to get a consultation with left the practice unexpectedly a week before my consultation. Then the neurologist was saying that I would not need to pursue surgery. This left me feeling like I wasn't sure if I was being told not to pursue surgery because I did not need it or was related to the fact that the surgeon associated with their practice that specializes in Chiari was no longer there unexpectedly. This is after it was presented to me like the surgery was an option to consider, and again, it was a week before my consultation with the surgeon.
Prior to my MRI I had no clue what chiara was and when they explained the surgery to me they made it seem like it was minimally invasive, as far as brain surgery goes. To the point that they basically said it wasn't brain surgery, it was in limbo between brain and spine surgery. decided I could return back to work within about 2 weeks (I work from home). They've prescribed some medicine which has been so so, occipital nerve blockers, which I'm fighting is my insurance about, and PT from my neck head and spine.
I got a second opinion today and they said based on my symptoms that they would recommend pursuing surgery. But they characterize the surgery as something huge even referring to the area in the brain in which they are doing the surgery as" God's country". So this has me freaking out a bit. I guess I was kind of operating under the assumption that if the surgery was something that was presented I would take it because I feel like the headaches are getting more frequent, the brain fog is affecting my daily life, my head feels like it's going to explode when I laugh. But I was also initially presented with the surgery as being very common and minor. To be frank, I thought that the initial neurology practice was kind of blowing me off, which made me feel like I wasn't being listened to yet again. But now I'm confused as the surgery is being presented as more than I initially thought.
Sorry for my rant. I'm kind of freaking out. I guess I have some questions
-
have people found symptoms to be alleviated by medicine and/or PT, if so, what about their brain fog? I feel like I'm constantly struggling with my words and pulling up blank when someone's asking me questions.
-
if you experience brain fog and cognitive related stuff and had the surgery were your symptoms alleviated?
3)what is your personal take on the severity of the surgery. This is not me asking for like a yay or nay necessarily but just wanting to understand how The surgery was presented to others just because my two experiences were so dramatically different.
- does anyone have any Chiari specialist they would recommend in the Ohio area?
Thank you for even having this thread where I can feel like I can put this out into the universe so it's not taking up space my brain that already feels full of pressure.
Posted Sep 1, 2026, 4:30 PM UTC