This Is Spinal Tap
When you learn that you will require a spinal tap, an immediate sense of dread washes over you. There’s a reason why “Spinal Tap” makes for an appropriate name for a fictional heavy metal band. These words definitely invoke fear.
A spinal tap or lumbar puncture is often (though not always) required, in conjunction with other neurological tests, to confirm a diagnosis of MS. It is used when neurological exams and MRI aren't conclusive. The McDonald Criteria are currently used as the diagnostic test for MS. These criteria require that there exists dissemination of lesions in space and time. In my case, I had “only” had one attack. My MRI demonstrated the presence of lesions. However, I hadn’t met the requirement of dissemination of lesions in time necessary for a diagnosis. My neurologist gave me two options: 1. He could diagnose me with Clinically Isolated Syndrome and provide me with a lower tier Disease Modifying Therapy (DMT) while we wait for the next attack to strike, or 2. He could complete a spinal tap to see whether this provided the information needed to confirm his suspicion that we were, in fact, dealing with MS. The benefit of getting a definitive diagnosis is that he could provide me with a more effective DMT immediately. I opted to part with some of my Cerebral Spinal Fluid (CSF) in the hopes of getting a definitive diagnosis. Simply waiting for the other shoe to drop didn’t appeal to me. A new attack means new brain damage. I want to be doing everything possible to prevent new brain damage. I still haven’t recovered fully from my last attack, so waiting for new attacks gets a big “no thank you” from me.
What the neurologist is looking for when completing a spinal tap is CSF-specific oligoclonal bands. They compare a serum sample with a CFS sample. Oligoclonal bands are proteins called immunoglobulins. CSF-specific oligoclonal bands are bands which appear in the CFS sample, without a corresponding band in the serum sample. Their presence indicates inflammation of the central nervous system. CSF-specific oligoclonal bands occur in the vast majority of MS patients. However, they don’t occur in all MS patients, so a negative spinal tap doesn’t necessarily mean that a patient doesn’t have MS. However, patients in this situation will be forced to wait in Clinically Isolated Syndrome limbo until another attack strikes.
I attended St. Michael’s Hospital in Toronto along with my husband (official hand holder, cheerleader, and driver) on the morning of July 16, 2021. Before we got started, my neurologist reviewed detailed consent forms for the procedure. I had also agreed to participate in a scientific study that would require that a bit of additional CSF be drawn, so extra consent forms for that too. Next, a blood sample was taken. This is required for the analysis of the CSF. Then it was time for the spinal tap. My husband was sent out of the room. I was a bit saddened by this, as I felt better holding his hand. My neurologist first had me lie on my side on the examination table, holding my knees to my chest (think cannonball position). However, this didn’t give him adequate access, so he instead had me sit up and bend forward. First, he injected some local anesthetic to numb the injection site. Then he completed the spinal tap. I didn’t feel pain so much as an uncomfortable pressure sensation. This uncomfortable pressure sensation went from the injection site down into my right hip. The whole thing was over in less than 10 minutes. My neurologist and I chatted about our kids throughout. I then was instructed to lie flat for a few minutes before leaving. Based on what I had read online before the procedure, I opted to lie flat for 15 minutes.
I had set up our car so that I could lie down in the backseat while my husband drove. I had read that caffeine helps with avoiding the dreaded spinal headache, so I had purchased a package of chocolate covered coffee beans from Farm Boy. I laid in the back seat sipping coffee and popping coffee beans while my husband drove to my in-laws’ home (my in-laws had kindly volunteered to babysit our toddler). By mid-afternoon, I was feeling alright. I was a bit stiff, but otherwise feeling well (and a bit wired, courtesy of the copious supply of coffee beans). No headache had surfaced.
Maybe I wouldn’t have developed a spinal headache in any event, or maybe the caffeine trick works and these babies were the secret to my success… either way, I recommend them.
Given that I was feeling fairly well, we opted to move ahead with our planned camping trip for the weekend. We had already had two camping trips cancelled that summer, the first due to COVID-19 related closures and the second due to abysmal weather (while I am not ordinarily a fair-weather camper, having a toddler definitely changes the metrics). I was dead set against letting a little thing like a spinal tap get in the way of the one camping trip we’d have all year. I was a bit stiff and tender all weekend, but we still managed to have a good time. Thankfully, I never did get the dreaded spinal headache.
Feeding my little monkey breakfast on the campsite less than 24 hours post-spinal tap. Getting a spinal tap doesn’t necessarily mean that you need to put all plans on hold.
Spinal headaches are common and usually start within a day or two after a spinal tap. They are thought to be caused by an internal leak of CSF at the puncture site, which causes pressure changes in the CSF. You can tell that it’s a spinal headache if it goes away when lying down but comes roaring back when you stand up. Usually, these spinal headaches resolve on their own, but in some instances, patients must get a blood patch (basically, a procedure which uses your own blood to form a clot over the CSF leak).
In hindsight, would I still choose to get the spinal tap? Yes. Getting the spinal tap meant getting an earlier diagnosis. As a result, I was able to hit the ground running with my MS treatment. I began taking Kesimpta, which is one of the most effective DMTs on the market today. However, if you are faced with this decision, I think it’s important to evaluate your own philosophy on treatment. If you wouldn’t choose an aggressive DMT, or if you would plan to manage your MS using lifestyle changes alone, then waiting to be diagnosed until your next MS attack may be the right choice for you.
If you are reading this just before your own spinal tap experience, I would definitely recommend ensuring that you are well hydrated, consuming some caffeine (or if you want to follow my lead, just a truly excessive amount of caffeine), lying flat for a few hours after the procedure, and having a great support person with you for moral support.
“This pretentious ponderous collection of religious rock psalms is enough to prompt the question, ‘What day did the Lord create Spinal Tap, and couldn’t he have rested on that day too?'” – Marty DiBergi
