So the spinal headache hit me yesterday. After doing so well the day after my tap, I didn’t expect it. It’s not the excruciating pain that many others have described, more like the worst sinus headache I’ve ever had when I stand up, one that goes from behind my eyes to the top of my head. Caffeine helps tremendously, so I’m taking Excedrin migraine and drinking coffee to keep it bearable. If I’ve had enough caffeine, I feel okay. Otherwise, my back feels better, and I’m ready to get back to something like normal life. Cabin fever is settling in, so I’m headed to my parents’ house today with my niece for dinner and a change of scenery.
Test results are trickling in from my blood work and my spinal tap. Many of them are normal, and things like Lyme disease and lupus have been ruled out, as have other autoimmune disorders. I began taking a Vitamin D supplement a few months ago when my doctor described my level as “suboptimal.” She recommended 2,000 international units per day, and I’ve been taking 5,000 IUs with an additional 1,000 IUs in my calcium supplements. The level went up only eleven points and is still not where it should be. I don’t know what to do with results like those. The tests that will more definitively lead to my official diagnosis are still out, so I’m waiting anxiously for them, even though I’ve lived with the understanding that I have MS for months. The only thing that would be shocking now, to both me and my doctor, is if it’s something else after all. The chances of that are incredibly slim.
What I really want to talk about today is MRIs. In the past five months, I’ve taken five journeys into the MRI machine, both the cylinder and open options.
I wasn’t prepared for the first one. It was scheduled quickly after my optic neuritis was confirmed to get a closer look at my orbits, brain and stem. I should have asked the neurologist to prescribe a sedative but wasn’t thinking about it in the flurry of activity, so I e-mailed my primary care doctor to see if she could call one in. By the time she got the message and called me back in the morning, I was already on my way to the hospital, and it was too late. I’d have to get through it on my own.
I am somewhat claustrophobic, and I was also terrified about the whole experience, so I went in with nerves on fire. My parents, the most calming presences in my life, came with me, and though they hid it well (mostly), they were nervous for me. When it was my turn to go back, I was brought to a changing room and told to get into scrubs.
Before the MRI, I was brought into a small room for a blood draw and to put in a line for the contrast material. My anxiety was palpable, and the nurse was sympathetic, telling me not to look at the machine, to close my eyes and allow a washcloth to be placed over them so I wouldn’t see it. I laid down on the table, where the washcloth was put into place, and the technician told me she was going to slide me in, to take a deep breath. I did, and she pushed the table into the machine, which sounded and felt exactly like being slid into a morgue drawer, complete with a clunk when I was all the way in. Even though my eyes were closed, the darkness that descended was surprising, and I couldn’t shake the feeling of being buried alive. My arms pressed into the sides of the cylinder, and I was painfully aware of how close the top of it was to my face. It was hard to breathe, the air stale and stuffy, and I came very close to pushing the panic button clutched in my right hand. You have to get through this, Erin, I thought. You have to find out what is going on. You can do it. You can do it. You can do it. The technician let me know the first picture would take three minutes, to remain completely still, and the machine began making its loud noises, obscuring the music from the station I’d chosen before going in. I tried to imagine myself outside, walking around the lake or alongside the river with my dog, anywhere but inside that MRI. Then there was a brief respite before the next picture began, and the one after that, and the one after that until I lost count. I quickly learned to take deep breaths between the pictures to calm down, if only just. After dying several deaths, the technician pulled the table out to put the contrast into my line, and being put back in for the second time was worse than the first, my heart beating rapidly as I fought the temptation to push that button. She did several more scans, and after what seemed like a lifetime, it was finally over. I’ve never left a room more quickly.
The second scan was done a week or two later, this time looking at my cervical and thoracic spinal areas. I had my Xanax and went in feeling like a pro, sure I would be okay this time. Although my neurologist had ordered the scans with and without contrast, the technician insisted the order only said without contrast, so I didn’t have to get a line. I should have spoken up then but didn’t feel comfortable challenging him, which led to another MRI a few weeks later. I was unprepared for the MRI table being elevated several inches above where it had been for my brain scan, and I panicked about being able to fit inside. I felt nothing from the Xanax and almost started weeping as I was crammed into the cylinder, my chest touching the top of it when I breathed in and out. The first scan had been torture, and this was much, much worse. I managed to hold it together, barely, through the scans of my c-spine. The technician pulled me out to make some adjustments before beginning the t-spine, which is lower in the body, so I had to be pushed in even farther. My shoulders were hunched up around my neck, my chest and arms pushed to the top of the machine. I couldn’t breathe, I couldn’t breathe, and finally, I pushed the panic button, emerging from the cylinder crying, the closest I’ve ever been to a panic attack. The technician called another location with an open MRI, and I was sent there that afternoon for the t-spine imaging.
The open MRI was a breeze. Even though it is still an enclosed space, the sides are open, giving it a much airier feeling. I felt foolish for not having gone there in the first place, wondering why anyone would go into the cylinder when this was an option. Well, the reason for that is because the pictures aren’t as clear, but after two terrible experiences with the closed MRI, I was a believer. My scans showed a potential lesion on my c-spine, but without the contrast material, it was difficult to tell if the blur was artifactual or real, so I was sent back to the open MRI a few weeks later to have the scan done with contrast, the radiologist declaring that the blur had been artifactual. That was good enough for my first neurologist, but my second, director of the MS clinic at the med center, disagreed when I went to see her for the first time the following month, deciding that it was indeed a lesion. She found another on my brain that had been missed.
I learned a lot from those initial MRI experiences. When my three-month scans of my brain and spine were scheduled a couple of weeks ago to see what changes had taken place, I went with the open MRI. I took Xanax and felt pretty good at the beginning, but lying still for almost two hours takes a lot out of a person, so it wasn’t as easy as I thought it would be. The images, though low in quality, unfortunately showed three new lesions. My doctor wants me to go back into the closed MRI for the next set of images in six months, and I think I can do it with a sedative and sheer willpower of mind over matter. I think. It’s good to know that the panic button is there if it turns out that I can’t.