The Joy of Getting a Spinal Tap
Last updated: March 2023
Getting a diagnosis of multiple sclerosis does not come easily. I’m not even referring to the onslaught of symptoms, less than qualified doctors, or the anxiety that comes with not knowing what’s wrong with you. This time, I’m referring to the actual tests that one undergoes when MS is suspected. I’ve recently talked about one of our favorites, the MRI, and how that is not the most pleasant experience. Now I want to discuss one of the other key tests used for determining a diagnosis of Multiple Sclerosis, the spinal tap (aka lumbar puncture).
Spinal taps for MS diagnosis
A spinal tap is a procedure in which a doctor inserts a needle between two bones of the lower spine to withdraw the liquid that is there. This liquid, known as Cerebrospinal Fluid (sometimes referred to simply as CSF), is present around your brain and spinal cord. The primary job of this fluid is to act as a cushion and protect them from injury. Once some of this fluid is removed, it is then tested.1
When they test the fluid they are looking for a number of things, including proteins called oligoclonal bands (sometimes referred to as O-bands). The presence of these proteins could be a good indicator that the body is having an abnormal immune response or that the nervous system is inflamed. They can also look at the fluid and determine if there are any proteins that come from the breakdown of myelin.2,3
A spinal tap alone
These tests are a good indicator that something is wrong with the immune or nervous systems. Testing of the cerebrospinal fluid alone cannot determine if the issue is MS, though. In fact, some people with MS will show no problems in their spinal tap results (the National Multiple Sclerosis Society says that 5-10 percent of MS patients will show no abnormalities). So a full diagnosis of MS will often involve a spinal tap, MRIs, as well as looking at a person’s symptoms and medical history.4
I’ve actually had to endure two spinal taps in my life.
My first spinal tap
The first was for a bout with meningitis, and the second occurred while getting my MS diagnosis. A spinal tap requires you to be very still, stay hydrated, and then to rest on your back for at least an hour. 5 Not a big deal for me the first time around because of the meningitis. I wasn’t moving or doing much of anything then.
My second spinal tap
The second time, I was actually feeling good. The MS exacerbation I had that had hospitalized me had passed and by the time I had the spinal tap, I was moving well. The procedure involved laying on my side while the doctors injected a local anesthetic into my lower back. While that anesthetic did a good job of numbing the entry point of what seems like a gigantic needle, it didn’t numb everything. Eventually, as that needle gets deep enough, it's possible to absolutely feel it. However, for me anyway, it felt more like pressure than pain, and it was over fairly quickly.
Take time to rest afterward
Afterwards, I laid on my back in the hospital for a couple hours while they observed me (standard procedure for spinal taps). I actually felt pretty great afterwards though, which led me to make a big mistake. I was in college (young and dumb as the saying goes) and itching to get back to playing hockey. So I rested immediately after my spinal tap but decided to go play in a hockey game that night. That turned out to be a massive mistake on my part.
Side effects: the spinal headache
One side effect of spinal taps is known as a spinal headache, and it’s one of the most awful things I’ve ever dealt with.5 By my third shift into my hockey game, I was nauseated and hit with the most painful headache of my life. It was blinding it was so painful. After vomiting on the bench and being doubled over in pain, I had to be carried to the locker room where I just wanted to lay on the floor (if you’ve never been, the floor of a hockey locker room is not pleasant). I ended up having to be driven home where the pain persisted through the night and into the next morning. A call to the doctor left me with the advice to rest and keep hydrating (as well as being questioned about why I would go play hockey after a spinal tap). So my advice with spinal taps is to listen to the doctor and rest up afterward. Not all spinal taps have to end as my second one did. For many, they are a much easier procedure than they sound.
Sharing spinal tap stories
Spinal taps continue to be an important part of diagnosis for not only MS but many other neurological conditions. While not a foolproof way to diagnose multiple sclerosis, they can still yield valuable information about the status of your nervous system. While many in the MS community have already had one, I know we get a lot of people still seeking their diagnosis, as well as friends and family looking to know more about what we all go through, so it seemed like a good idea to talk about my experience with spinal taps. Thanks for reading, and I’d love to hear any related stories you might have in the comments!
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