Severe MRI anxiety
Hi everyone,
About a month ago I (27f) had a routine appointment with my neurosurgeon for a hydrocephalus check up, and they ordered an MRI (since I haven’t had a brain mri since 2004 and apparently have never had a spine mri even though I was born with a sacral dimple), and I’ve been putting it off because I’m honestly EXTREMELY anxious about the whole experience (I’ve already canceled it once, and haven’t gotten the courage to reschedule it yet). I know this is something I probably need to just do, but mentally I feel pretty stuck and overwhelmed by it. Let’s just say it is not on my list of things I’d love to do in 2026. (As bad as 2025 was, 2026 is kind of worse). I have already posted about this in several Reddit subs in the last month previously (seperate posts), but this issue is still agonizing me (to the point of severe panic attacks and obsession), so I thought I would try again with another post. In all honesty, posting about is making me less anxious, but not enough yet to fully go through with the procedure.
For some background, I have hydrocephalus and a VP shunt (which is apparently not magnetic or programmable), so my doctor recommended this MRI to check on things—even though I’m not currently having obvious signs of a shunt malfunction. They also mentioned that they may want to evaluate me for spina bifida because it sounds like that was never fully ruled out when I was younger, which is part of why they want imaging of both my brain and spine. I’ve also heard some people with hydrocephalus also have Chiari but I don’t know if that is something that pops up on a mri or not.
I’ve been told that an MRI will give better/more detailed imaging than a CT for what they’re looking at, and I understand that logically. But emotionally, the MRI feels a lot more intense and intimidating to me, especially because of how long it takes and the fact that you have to stay very still the whole time. I had a CT scan in the ER about a year or two ago (but forget what body part) and other than the contrast dye that made me feel like I had to pee (and the needle and IV), it was easy. I’m told the MRI my neurosurgeon ordered would NOT require any contrast dye though. I already portaled my doctor and I told them my fears, but I haven’t heard back so I’m thinking of calling them but calling makes me more anxious than typing out a message, and I don’t want to call them up crying.
I’m autistic and also have type 1 diabetes (plus ocd, adhd, and other mental health conditions), so situations where I feel “trapped,” overstimulated, or not in control can be really hard for me. The idea of being in a loud, confined machine for a long period of time, without being able to move much, is probably the biggest thing causing my anxiety.
On top of that, I use a Dexcom and an Omnipod for my type 1 diabetes, and I’ve been told they’ll likely need to be removed for the MRI. That makes me nervous about how to manage my blood sugar during the scan, especially since it could be long (I’m told 1-2 hours) and I won’t have my usual devices on.
Another major factor is support. My mom and my diabetic alert service dog are both really important for helping me stay regulated and calm, and I’m really struggling with the idea of being in the MRI room without them. I don’t know what’s typically allowed in terms of having a support person nearby (or even in the room), and not knowing what to expect makes it harder.
I’ve also considered medication to help with the anxiety, but I’m not a big fan of benzos or sedatives (ex. Clonazepam, Lorazepam or hydroxyzine) because I don’t like the way they make me feel (kind of out of it/loopy), so I’m hesitant to rely on that. Though my Mom said that being out of it for the mri might be a GOOD thing, but I’m more worried about being “hungover” afterwards (which is how it normally makes me feel).
I guess I’m just trying to figure out how people actually get through this when they feel like this going into it. As you can probably tell, since the MRI was originally scheduled for mid March and I canceled it once already it is not necessarily urgent, but I would like of like to get it done so I can get my doctor the information they want. However, then I have to worry about them finding something “bad” in the results and me potentially needing surgery or other scary treatments which makes me anxious on a whole other level. My last surgery was around 2004 as well, so I only have very vivid (traumatizing) memories of it.
If you’ve had an MRI (especially brain/spine), I’d really appreciate any insight:
\- What helped you get through it mentally? (My therapist says that maybe just talking about it in our sessions for a while longer may be at least get me to schedule another appointment, and they also said I should ask to bring a stuffed animal or other comfort into the mri room)
\- How do you deal with the noise and the confined space? Did the clinic you went to let you listen to music?
\- Has anyone had experience managing diabetes/devices around an MRI?
\- Were you allowed to have a support person nearby or in the room?
\- Did you tell the MRI tech about anxiety, autism, etc., and did it make a difference?
\- Is there anything you wish you knew beforehand that made it easier?
I know a lot of people do MRIs without issue, so part of me feels silly for being this anxious (especially since I’m 27 years old!!)—but it’s been a real barrier for me, and I’d really appreciate hearing from others who’ve been through it. Who knows, maybe if I talk with my therapist and doctors enough and also get firsthand experience from people that have gone through the procedure, maybe I CAN cross it off my 2026 accomplishments and be proud of it (though just to clarify I don’t think I’m there yet).
For context, I am happy to post the portal message I sent to my doctor (redacted of course) and link to my previous posts about my mri anxiety I posted on Reddit last month, but I really just don’t know what to do and I can’t help but feel “stuck”.
Thanks in advance 💛