Terrified of having an mri and need advice/support

Hi everyone,

About a month ago, I (27f) had a routine neurosurgery appointment for hydrocephalus, and they ordered an MRI—my first brain MRI since 2004, and apparently I’ve never had a spine MRI, even though I was born with a sacral dimple. I’ve been putting it off because I’m extremely anxious (already canceled once). Logically I know I need it, but mentally I feel stuck and overwhelmed.

Some background: I have hydrocephalus and a VP shunt (not magnetic or programmable), so the MRI is to check that everything’s okay. They also might want to evaluate for spina bifida, which apparently wasn’t fully ruled out in childhood. I’ve heard some people with hydrocephalus also have Chiari, though I don’t know if that shows up on MRI.

Emotionally, the MRI feels intense compared to a CT I had a year or two ago. I’m told this MRI won’t need contrast, but the idea of being in a loud, confined machine for 1–2 hours, staying very still, is terrifying. I’m autistic and have type 1 diabetes (plus OCD, ADHD, and other mental health conditions), so situations where I feel trapped or overstimulated are really hard.

I also use a Dexcom and Omnipod, which likely need to be removed, making me anxious about managing my blood sugar during the scan. My mom and my diabetic alert service dog help me stay calm, and I’m unsure what’s allowed in terms of support in the MRI room.

Medication is an option, but I don’t like benzos or sedatives—they make me feel loopy/hungover, though my mom says it might help me get through it.

I guess I’m looking for tips from anyone who’s been through a brain or spine MRI, especially if you’ve had anxiety, autism, or diabetes:

•	What helped you get through it mentally? Would bringing a comfort item help?

•	How did you handle the noise and confined space? Did your clinic allow music?

•	Any tips for managing diabetes/devices during an MRI?

•	Were you allowed a support person nearby or in the room?

•	Did telling the MRI tech about anxiety/autism help?

•	Anything you wish you knew beforehand?

I know many people get MRIs without issue, so I feel silly for being this anxious—but it’s been a real barrier. Hopefully talking with my therapist, doctor, and hearing firsthand experiences can help me eventually cross this off my 2026 list.

Thanks in advance 💛

Please note that I posted a longer version in other subs, but I had to adhere to this subs character limit so please feel free to ask any any other questions or concerns.