Last week I participated in an additional MRI for MS research in the fancy shmancy 7T MRI at Cleveland Clinic. You can read more about my thoughts on why I did this and the importance of research. Here’s how it went and here are my thoughts on improving the patient experience because I believe in real-time feedback.

A lot of yuck

I had a MRI hangover for two days after this scan (definitely exacerbated by the Xanax I took). It was not a pleasant experience overall, from not having music or distraction during the scan to the intense and lingering head pain at the back of my skull. I will have to be in complete awe of the new brain images to gear up to do that scan again a year post transplant.

For those who have never had a brain MRI, let me paint you this not-so-fun picture…

In a hospital gown, pants (I love when the locations offer pants) and grippy socks you lie down on a long plastic tube. The head is positioned in a specific cradle made of hard plastic. There is a small piece of foam at the back of the head, but it is not pillow-like. A wedge is placed under the knees to assuage back pain. They also tend to offer a warm blanket.

This time, I was given ear plugs (since I wasn’t able to listen to music with ear phones) and then cold foam pads — similar to gymnastics foam pits — were placed around my skull and pushed and tucked in to ensure ZERO movement of the head and neck. After the foam was secure, the Silence of the Lambs-esque face cradle is placed over your head. I always, ALWAYS close my eyes before this part and do not open them again until the face cradle is removed and I am out of the tube. Then the massive conveyor belt pulls you in the machine. Then the loud, consistent, repetitive, percussion and banging begins for the entirety of the scan. Also the last series of images caused my entire body to shake like I was on a vibration plate for a solid ten minutes. The 7T scans took about an hour. My usual MRIs are closer to two but I did not have any spinal images this scan, saving a lot of time.

When the scan was done I was dizzy, disoriented and my head hurt. The very nice tech helped me to sit up. I had to sit for a few minutes to regain my equilibrium.

Research is important to further our understanding and treatment of disease, but this scan was brutal. Would I do it again for research? Yes. Was it “well tolerated” as they say in medicine? Decidedly no.

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Expectation versus reality

• Them: I have personally done this and it wasn’t too bad.
• Me: It was really really bad. Manageable, but the undersell on side effects was not appreciated whether intentional or not.

• Them: You may experience spinning or vertigo due to the large magnet, but it will pass.
• Me: When you are on the conveyor belt heading straight back into the belly of the MRI machine, it actually felt like my whole body was turning down a curved path. If any science-minded people can explain why a really big magnet does this to the body, I would LOVE to learn.

• Them: The spinning should subside within 20 seconds.
• Me: I felt like I was in a hammock, swaying back and forth for several minutes. The lovely tech offered to wait to get started until the swaying subsided, but I said, “let’s just get on with this and get it done.”

• Them: I think you can listen to music during the scan.
• Me: There are no headphones in the 7T and it is not set up to stream music during the scan. They have never offered music in the years that they’ve had the 7T. Those offering this research opportunity to patients should know better and be able to share accurate information based on their equipment. Low hanging fruit here, people – come on!

• Them: You need to come early and fill out research paperwork.
• Me: The paperwork was the exact same form I fill out for every MRI asking if I have tattoos or penile implants. It could have been completed ahead of time in MyChart or filled out prior to the scan with the MRI tech. I also had to go from one side of the Mellen Center to the other. In a building full of individuals with mobility challenges, maybe don’t make them walk from one side to the other… for no reason! Why does this need to be explicitly stated?

• Them: You may experience vertigo.
• Me: Nobody said anything about pain. I am incredibly conscious of the P word in medicine. I want to know what to expect. About 40 minutes into my MRI, I had intense head pain at the back of my skull that did not subside for more than 24 hours.

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I survived. I’m glad I did it. I would encourage others, if given the opportunity, to do it as well. When I don’t feel supported by the clinical teams however, I feel profound disappointment. I did not feel that I was told all the necessary information despite asking good questions.

Communication is a key part of the medical process and we all have things to learn.