When I first read that a lumbar puncture was a common diagnostic test for MS, I immediately thought, “spinal tap.” Horror movie. Heavy metal. Hammering a nail into your spine, excruciating pain, dangerous. But, then a remembered that I’d had a spinal block when my son was born and it wasn’t that big of a deal. Later, the neurologist made it sound like a fairly simple procedure. And, Google assured me I had nothing to worry about. Lies.
My mom picked me up, we stopped for coffee, and drove to Seattle. I was a little nervous, but not scared. From everything I’d read, there would be a sting or burn when they numbed me, but I wouldn’t feel the actual procedure. I’d been poked so many times in the weeks before that I wasn’t concerned about about getting poked again. Dr. Google said that after the procedure, I should take it easy for a day, but I could go back to work that day if I didn’t have a physically demanding job. I took the day off, but only because it was about an hour drive each way and the appointment was in the middle of the day. I’d also read that some people would have a sore back or headache after. That didn’t worry me. The doctor’s office had advised me to make sure I was very hydrated, so I’d followed instructions, and drank a lot of water the night before and the morning of the lumbar puncture. I was ready. But, as I sat in the waiting room, for what felt like a little too long, I was bouncing my legs with nervous energy.
A nurse took me into a room that looked more like an operating room than an exam room. The first section of the room was partitioned off by window of some kind. I think there was a sink and a counter on one side. On the other side was a sterile, white room with a bed in the center, surrounded by machinery. The nurse explained what would happen and went over the possible side effects. The doctor repeated the same information when he came in. They both said there would be a needle to numb me. The shot would sting and the anesthetic would burn, but then I wouldn’t feel anything. The doctor would take an x-ray of my back and mark it so he knew where to insert the needle. Then, he would insert a needle into my spinal fluid. I might feel a twinge or shock down my leg if it touched a nerve, but it wouldn’t hurt. I would lie on the bed for however long it took to fill the vials with spinal fluid, approximately forty-five minutes. That part was new information and felt like a very long time to by laying on table having a needle in your spine.
They both told me that some people get a headache after, and if I did, I should drink caffeine, take Tylenol, and lay flat. If the headache lasted more then five days, I should call because that meant that the hole had not healed and spinal fluid was leaking. The doctor said it was not dangerous, but it can be really uncomfortable. He told me that it was very rare, and then talked about how this had happened to his wife after a C-section. When the hole doesn’t heal on it’s on, he explained, they do a procedure to patch it with your blood. I’d had migraines for years. Once, I didn’t get out of bed for three days. And, trying to read, or really do anything, with limited vision in one eye, causes a pretty constant headache. So, I wasn’t very concerned about the possible headache. I was worried about the needle going into my spine.
I laid on the table on my stomach, in the center of the room. I was happily surprised that I didn’t need to put on a gown. The nurse just had me pull up my shirt, pulled my pants down a little so that my lower back was exposed, and covered my back with tissue-like paper with a hole in the center. She gave me a pillow to rest my head on, asked me to put my hands up by my head, and stay still. The doctor took an X-ray of my back and marked the spot he wanted to insert the needle with a marker. He sterilized my back and then inserted the first needle to numb me. It barely stung. Less than any of the IVs I had in my arm in the last couple weeks. Easy, breezy. He did several more injections of anesthetic to be sure I was numb, I only felt a slight pressure, no sting, no poke. I was numb and marked. We were ready to go.
The doctor talked to me, explaining what he was doing as he inserted the second needle into my back, into the spot he’d marked, as he tried to get to my spinal fluid. He went slowly, and asked if I could feel anything, checking to make sure the anesthetic was working. I told him I could feel it. Was I not numbed?? He asked if it felt sharp, like a needle. No. Okay, good, he said, then the anesthetic was working. But, he gave me a few more shots to be safe. He explained I would feel some pressure. He tried again. I could feel it. This was more than pressure. When they’d explained that I might feel something if they hit a nerve, I had expected maybe a shock or jolt down my leg, but this was not that. It was my back, and sometimes my leg. It was painful. Like a charlie horse? A muscle spasm? That’s the closest thing I can think to describe it. I winced and flinched every time. It felt like something was wrong. Was I overreacting? Should I just expect it to hurt and grin and bear it and get it over with? He said that he was hitting nerves and he just needed to keep trying to find a path to my spine. He apologized. He tried over, and over again. Eventually, he stopped to take another X-ray. He moved the table, up, down, tilted. And, tried again. And, again. He did this for at least half an hour. Trying to get to the needle to my spine, to find a path, but hitting nerves every time.
Finally, he got the needle in. That didn’t hurt. And, I laid there while they filled vials with my spinal fluid. I felt nothing as the spinal fluid drained. Except relief. He talked to me the whole time, and then said he had enough fluid, pulled out the needle, and put on a band aid. Again, I felt nothing. The doctor left and the nurse helped me get up. She set up a step stool next to the bed. There was an X-ray machine over the bed, so I couldn’t just get up, I had to kind of slide out of the bed, and then stand. I didn’t realize how high I was and I couldn’t really get up and look, so I misjudged my step, and stumbled, and had to catch myself, which meant I stood up much faster than I meant to. I immediately felt a sharp, stabbing pain in my head. I felt nauseous and dizzy. Like, a bad migraine.
Then, the nurse told me I also had to get a blood draw. So, I sat in the hallway, head pounding, trying to get as close to vertical as possible in an uncomfortable chair, closing my eyes under the fluorescent lights, while we waited for someone to come draw my blood. Eventually, someone came and took me into a small curtained off room to draw my blood. But, she didn’t have all the supplies she needed. So, again, I waited. I didn’t know I needed my blood drawn, so I had a long-sleeved shirt on. There was a curtain, but she didn’t pull it closed. I explained that I would need to take my arm out, but she did not seem to understand that meant showing my stomach and bra to the hallway, and stood waiting for me to take my arm out, with no intention of closing the curtain. I was so irritated, sick, and ready to leave, I didn’t care anymore. I pulled out my arm, exposing myself. She took my blood, someone else came and closed the curtain, and then we could finally leave.
We had to walk down a very long, windowless hallway, like the ones that connect your gate to the main terminal in an airport, to get back to the parking garage. My headache was slightly better, but my back hurt. A lot. I was hunched over, taking excruciatingly small, slow steps, When we got back to the car, I reclined the seat and laid back and closed my eyes. We stopped for coffee and food, which helped a little, and then I went home, hobbled into the house, and laid down.
The lumbar puncture, which I’m pretty sure is a name that a PR firm came up with to make it sound more pleasant than spinal tap, was very unpleasant. But, the worst was yet to come.