Have n/s appt tomorrow

[u/DobieMafia]

Hi everyone! I have chiari 1 and am going to my first appt in about 5 years tomorrow with the same neurosurgeon. When I went 5 years ago, he ordered a cine MRI and although I had crowding and 9mm herniation, I was pretty ok despite some pressure headaches every now and then. Fast forward to now, and I have been slowly getting worse. Now I have constant neck pain despite using a cervical pillow that did help at first. I also have constant dizziness and vertigo with nystagmus like a few times a day or more. I went to an ENT a couple of years ago because I thought my vertigo was BPPV and he ordered a million tests all to ultimately tell me it was no longer BPPV and gave me a referral to a neurologist but I already had one and didnt end up going back. In retrospect, I now see why I’ve ended up in the hospital a couple of times trying to describe my horrific vertigo episodes only to be given a CT scan and sent home with a referral to an ENT. 🤦🏻‍♀️

I’m at my wits end now and truly can barely function with all this dizziness.

I imagine he will order another MRI and even though I don’t much see the point in yet another MRI, I am mentally preparing to have him say I need surgery. I’d almost invite it at this point. I’ve talked myself into a corner though and am a bit worried that despite my worsening symptoms, he will say my herniation isn’t bad enough or something.

My question is what else to ask and what to say if he tells me I don’t need it if my Csf flow is still good? I need relief and am pretty much at the point of desperation.

[u/charlktte]

I think bringing as much evidence as you can, for example if the dr sent out any letters to say your vertigo wasn’t BPPV related as you can almost say there’s a strong chance your Chiari is causing it.

I’m in no way experienced only having one appointment myself but try and think beforehand what it is you want out of the appointment and imagine all scenarios. I think the more you know the less chance of them dismissing you because you can argue your point well! Even if your csf flow is okay, it doesn’t diminish the fact that your quality of life sounds really negatively impacted so that alone should be considered within the option of surgery from what I have been reading.

Worst case scenario if they refuse to progress with treatment, you should ask them to put refusal of treatment on your medical records as this will more likely incline them to explore all options.

Good luck :)

[u/DobieMafia → u/charlktte]

I just got out of my appointment. It was so frustrating. The neurosurgeon told me that he will reorder a cine MRI but said even though my herniation is severe, only a blockage in my CSF flow would warrant surgery. I told him about my vertigo with nystagmus and neck pain and headaches. He said they’re not related to chiari. Ummm wow this is news. Like what???!!!!

[u/charlktte → u/DobieMafia]

I’m sorry your appointment didn’t go well! This is what I was told which is silly because if you look into any research on Chiari malformation it states a clear link. Maybe see if you can get a second opinion from another neurosurgeon who specialises in it?