Recovery and (Hopefully) Preventing the Spinal Headache

One of the more common side effects of a lumbar puncture is the spinal headache. It’s apparently the worst headache you’ve ever had, worse even than a migraine, and no medication will touch it. The only thing that will help is lying flat on your back. This is because extracting fluid leaves the pressure of your spinal fluid unbalanced, as it were, and when you stand up it flows away from your brain, changes the pressure, and you get pain. When you lie down flat it can flow everywhere it’s supposed to. I asked how I’d know when to seek help if I got a spinal headache and they said if it lasted more than a few days to call my doctor and/or head to the emergency room. The cure for this is apparently something called a blood patch, where blood is drawn, then injected into the space where the spinal fluid was drawn. The blood then clots and seals the hole.

Another, less common, side effect is infection. Keep a look out for the usual symptoms: redness, heat, and swelling at the site of the incision, or fever. If that happens, get yourself to the doctor ASAP.

Since the procedure I’ve had minimal pain in my back, mostly around the injection site itself. It gets sore if I sit upright for too long, which I guess is another reason why they say to lie flat on your back for a few days. The afternoon of the procedure I was exhausted, naturally, and was walking very slowly and stiffly. After a good night’s sleep I felt much better.

I’ve also had so much water to drink since the procedure that I’m peeing clear and I’m pretty sure I’ve worn a path in the floor between my bed and the bathroom. Drinking lots of fluids helps build your spinal fluid back up faster. I had a lot of spinal fluid extracted and they told me to expect a headache, but so far I haven’t had one so I must be doing something right. (Seriously, I am a very hydrated person. I just knew some day that would mean good things for me!)

The most surprising side effect was how I felt emotionally. I’m much better today, but the evening of the procedure I felt horrible. I was almost crying, and I felt so vulnerable and violated. A nurse-in-training friend reminded me that even though this procedure is minimally invasive, it is still invasive. I kept feeling as if something foreign had invaded a place that should not be invaded, which, when you think about it, is what happened. I was very afraid before the procedure and it left me with a lot of worries. Not because the procedure itself was so painful or horrible, but because I have this solid conviction that my spinal fluid is sealed for a reason and should never, ever be tampered with. The spine and the brain, those things should remain New In Box, if you know what I mean.

There was nothing really to be done about how I was feeling. I was following all the instructions for a good recovery, I was safe at home, my husband was brining me everything I needed. I just tried to relax and after a good night’s sleep I felt a lot better.

Your Lumbar Puncture and You. (Or me, as it were.)

Now, all this near-fainting blew my valium plans right out of the water. There was no way I was taking that while feeling so terrible, and the warning about vomiting if I did take it had me scared. So I went to the lumbar puncture in full-on panic mode, though it was tempered quite a bit by my fasting and loss-of-blood spaciness.

I’d been prepared for the procedure by a tech who called me the day before and–even better–by one of my sisters who has had one before. Best of both worlds, right? I had all the medical knowledge and advice and all the practical knowledge and advice. And I had My Very Able to Advocate for My Needs Self. (Which if you don’t feel able to do for yourself, you should totally bring someone with you who will do it for you because it will make everything into a much more pleasant experience for you.)

When I was told to undress fully and put on a johnny I told the tech I’d be keeping my sweatpants on and would remove them in the procedure room if required. (My sister’s procedure was done with elastic-waisted pants on, mine was also.) I also brought my own bathrobe and put that on over my johnny. I may as well have been fully dressed, which made me the exception in a waiting room full of physically exposed and therefore emotionally vulnerable people.

Then they brought me into the procedure room and a tech gave me all sorts of forms to read and sign, and once again went over the procedure with me. She then introduced me to the tech who would be assisting who introduced me to the resident who would be performing the procedure and to the supervising doctor. I think every person I met explained the procedure to me and answered any and all questions I had. And I had many, so that was good. I also had the tech go through the list of things they would be testing my spinal fluid for–funnily enough, I knew some of the abbreviations she didn’t know, because I’m more familiar with my illness and other suspected illnesses than she is. Between the two of us we were able to identify just about everything. (I don’t know how necessary this was to know, but I like to be fully aware of absolutely everything going on with my health. Just know if you ask, they will tell you.)

So let’s talk about the procedure itself. It’s about what you think. You lie on your stomach on a table (my sister had hers done lying on her side). (If you feel cold at all, or in any way uncomfortable or vulnerable, go ahead and ask for a sheet or blanket to cover yourself. I was comfortable in my sweatpants, but did make sure I could keep the shawl another sister crocheted for me at the pillow so I could hold onto it. Trust me, it helps a lot to have something to cling to.) They clean your back thoroughly with antiseptic. Then they numb the spot on your back where they are going to insert the needle. Lidocaine, the numbing agent, works really fast, but it also burns for a few seconds when it’s injected. Your first shot wiill be PINCH BURN, your second Pinch Burn, and your third you might not feel anything at all. Then they put a cloth over your back to isolate the spot of the surgery.

The hospital where I had my LP done uses a series of x-rays to position the needle. This isn’t necessary, the procedure can be done in a doctor’s office with no x-ray at all, but I really like that my hospital does it that way. I felt much, much safer. Basically they take an x-ray, put the needle in, take another x-ray, adjust the needle or push it deeper, another x-ray, etc. You will feel some pressure and/or pain while they are inserting the needle. The resident told me it is not uncommon to feel a “zing” down one leg or the other when the needle gets to the right place to extract fluid. I didn’t feel that, but I did feel something I described as “more than pressure, less than pain” when they reached the correct spot.

Here’s where I stress: Do not be afraid to say “ouch” if it hurts. They need to know what you’re feeling so as to adjust what they’re doing. Don’t be stoic and try to get through it. At one point I felt very warm and sweaty and started to feel light-headed so immediately asked for a cool towel to put under my forehead. The supervising doctor told me that was a normal feeling and then monitored me to make sure I felt better and did not pass out. The towel helped almost immediately.

The procedure felt like it took forever, but I think it only took about an hour. Once the needle is in place and they start withdrawing fluid the procedure can either speed up or slow down. That depends on your body and on how your fluid flows. They could tilt the table to make it flow easier. For me, it apparently went quite well. I am an extremely hydrated person and I think in this case it helped. I didn’t feel any pain or pressure at all while this was happening, except for a low-grade headache they told me was normal. I even laughed once at something the supervising doctor and I were talking about.

Once it was done, they cleaned me off again, and since I wasn’t bleeding I didn’t even need a bandage. I rolled off the procedure table onto a stretcher and they wheeled me out into the hall to lie flat on my back to recover, during which time my husband fed me crackers with peanut butter like I was some tiny, baby bird, and held a cup with a straw so I could sip water. (I know, right? He will neither confirm nor deny that he shoved cracker in my mouth whenever he thought I was getting too worked up over something.) I was also told that drinking something with caffeine might help, which was fantastic since by the time all the stress was over I was dying for a cup of coffee. After about an hour they checked on me, had me sit up very slowly, and once I regained my balance they let me go home.

The Near-Fainting Experience

I like to be efficient. I don’t like to waste time or make two trips when one could do. My doctor knows this about me, which is why she once–with my permission and encouragement–scheduled me to have two MRIs at once. But yesterday I hit my wall. I’m glad I got most of it done in one trip to the hospital but I will never, ever be doing that again.

During the earlier double MRI we found lesions on my spine. This is not a thing to panic about, but it is a thing to run tests for, and did we ever run tests. I arrived at the hospital in the morning after fasting since the midnight before. I was only required to fast for four hours before my test, and as far as I knew they were drawing only four vials of blood, so I figured the extra fasting didn’t matter. I’ve never had a problem drawing that amount of blood after a 10 hour fast before, and, let’s be honest, I was not getting up at 6am on lumbar puncture day just so I could really quickly squeeze in breakfast. I’d much rather sleep in.

It took an extra-long time to check-in to the blood lab. The tech said something to me about orders taking a long time to print and wondered if I’d just seen my doctor that morning. I said no, shrugged, and went to wait my turn. When I got into the booth the techs (phlebotomists, yeah? but that’s so hard to spell so we’re saying techs) asked me if I’d ever had problems with giving blood before. No, says I. Even after fasting, they ask. Nope, all fine. Then they show me the 18 vials waiting to be filled. I was a little aghast and asked what their personal best number of vials was and they told me 36. Since it’s possible to take double the amount of blood they’re asking of me with no problems I shrug, say I’ll just be over here looking anywhere but at the needles and away we go.

You see where this is going, right?

“Are you feeling okay?”
“No???”
“How do you feel?”
“Weird???”
“How weird? What are you feeling?”
“Warm???”
“Do you feel light-headed at all?”
“I don’t know? Maybe???”
“Get the needle out of her! We’re done!” 

So that happened.

I didn’t faint, thanks only to the techs who knew what was going on when I didn’t. These women were fast. One got cold packs and held one to the back of my neck while placing the other under my wrist. The other got my husband—”What’s your husband’s name?” “Mike???”–and a wheelchair. They brought me cool towels and water and made absolutely certain I was feeling better before they’d let me leave. It isn’t a feeling I ever want to have again, and we’ll be making sure of that by splitting up the remaining blood tests into two trips, but at least it happened in the best possible place with the best possible people.