Last Tuesday, February 5th, I went to the hospital to get a lumbar puncture aka spinal tap. My neurologist needed to test my cerebrospinal fluid to rule out multiple sclerosis. I have no MS symptoms now, but I had an abnormal MRI of my brain, and an inconclusive result from a Visual Evoked Potential test, so this was the next step. He thinks the brain lesions shown on my MRI were just the result of 30 years of migraines, but we want to be sure.
The procedure was meant to be simple. You go in, they take the fluid, you lay flat for four hours in the recovery room, and then you go home. You might have a headache, but if you injest lots of fluids and caffeine, and you’re supposed to be back on your feet with minimal discomfort by the next day. HA!
The procedure went fine on Tuesday, and I walked out of the hospital that afternoon with some of the expected soreness in my back, and no headache. I had planned to be off work Wednesday as well to recover, and I spent Wednesday lying on the couch napping and watching TV. I didn’t have a lot of energy, and by Wednesday night I had developed a bad headache. I wasn’t sure whether the headache was caused by the spinal tap, or if it was any of my other headache triggers like hormones, weather changes, or whatever. I took some medicine for the pain and eventually got to sleep.
On Thursday I still didn’t feel great and had a mild headache. It was better when I was lying down, which is a symptom of a spinal headache. Spinal headaches are a common aftereffect of a spinal tap, and usually go away on their own with rest and lots of caffeine. Unless they don’t go away, which is what happened to me. It got really bad Thursday night, and by Friday morning I couldn’t keep down any food, water, or medicine. I was dehydrated and in serious, horrible pain. Given my history of migraines, it was hard for me to tell that this one was different, but as it got worse, I knew it wasn’t just a migraine.
I called my doctor, and he told us to head to the emergency room. He called the ER to tell them I was on the way. My husband had to take the day off work, and I was very glad he was able to. He drove me there while I lay with the passenger seat folded down so I could lay almost completely flat. As soon as we pulled up at the ER, I staggered out of the car and puked in the driveway. Mr. Bawlmer got me a wheelchair because I no longer could walk the 10-15 yards inside. The nurse at the admitting desk assured me I wasn’t the first or last person to hurl on their sidewalk, and she gave me a plastic tub to vomit in while I was in the waiting room. Fortunately, I didn’t need it and they got me through triage and into a room pretty quickly.
Once we were in the room, it took a long time to get any actual treatment. It felt like forever because I was writhing around in agony, and lying down no longer alleviated the pain. Eventually they gave me an IV of saline and caffeine, which slowly helped the dehydration, but did nothing for the pain. Getting the IV in was difficult and painful because I was so dehydrated, but they finally got it in on the second or third try.
The ER doctor checked me out and verified what my doctor had told me over the phone: I was leaking cerebrospinal fluid (CSF) at the site of the spinal tap, which had not clotted like it was supposed to. Your CSF fills your spine and your skull, so your brain floats in it. If you suddenly find yourself without this fluid in your skull, your brain begins hanging from the tissue that attaches it to the inside of your skull, which hurts like you wouldn’t believe. Floaty brain = good. Hangy, stringy brain = bad.
The cure for this condition is a blood patch. An anesthesiologist came down and took 20mL of blood from my arm, which was no small feat. I still was terribly dehydrated, and my vein collapsed while he was drawing the blood. I’m not wimpy about needles – I’ve donated about three gallons of blood, and had various IVs and bloodwork at other times, but this blood draw HURT. It was bad enough that it mostly blotted out the pain in my head while they were doing it. I didn’t care because I knew they were doing their best. I was only mildly concerned when they said if they couldn’t get enough blood out of my arm, they would have to find a vein in my groin or my neck. I wasn’t sure which of those delightful options to vote for, so I was glad when they eventually got all 20mL from my arm. The bruises from this procedure are still visible on my left arm right now.
Once they had the blood, the anesthesiologist injected it into my spine at the site of the tap. This forces the hole to clot and close, and the pressure of all that blood forces the existing CSF up your spine and into your skull. I had to lie perfectly flat for 30 minutes, after which the pain was supposed to subside. Only it didn’t. It was slightly better, but I still had a raging, unbearable headache. I had been without CSF in my head long enough to make everything really sore inside my skull, and all the stress apparently had triggered a migraine on top of that. When the pain didn’t resolve after the blood patch, they gave me a shot of morphine through the IV. As soon as the morphine hit my system, the pain began to fade. My eyes started streaming tears from the intense relief; painlessness after such a long period of agony was overwhelming to my system.
In another half hour I was sitting up in the bed, feeling hungry and thirsty. The nurse brought me apple juice and crackers, which tasted great after all that. Morphine makes everything better! Truly, it is one of humanity’s greatest inventions (when used properly, of course). After a little while longer, I was given prescriptions for painkillers and other drugs and we left.
My husband was scheduled to be off work Saturday-Monday, which was great. I was pretty much helpless through Sunday, and Sunday I called my doctor via his answering service to ask whether I still should have a headache that got better when I lay down and worse if I sat up. He had me go back to the ER on Monday morning, possibly to get another blood patch, but once the ER docs talked to me they decided I actually was getting better – it was just taking awhile. The anesthesiologist I saw Friday did the blood patch well, but he gave me an unrealistic expectation about how quickly I would feel better. He told me I should be fine in 24 hours, which was not the case at all. I went home Monday afternoon for more rest and medication, and stayed home Tuesday as well.
I want to emphasize how awesome and indispensable my husband was throughout all of this. He waited on me hand and foot, including a 5am breakfast taco run on Saturday morning when I woke up with nasty back pain from the previous afternoon’s blood patch (which creates a giant, invisible bruise). He made ice packs and heat packs for my head, made sure I got my medication on time, and kept me supplied with constant beverages so I could rehydrate and regenerate CSF.
I missed six days of work in all (my entire allotment of sick days for 2008!), and I still feel a bit like my head and legs are stuffed with cotton. I STILL don’t have my test results from the spinal tap. They better be good, because I just cannot deal with any more medical drama right now.
