This question popped up in an online intracranial hypertension support group I’m part of, and it made me realize that it’s a subject I haven’t ever really talked about here. I’ve gone into what Diamox was like for me, things I do to manage my symptoms, and the like, but I never really touched spinal taps (or lumbar punctures, often abbreviated as LPs).
If you have intracranial hypertension, spinal taps will be a fact of life for you. You’ll need at least one to be properly diagnosed, and possibly more to alleviate pressure spikes. The prospect of getting a spinal tap can be really scary for a lot of people — the internet is pretty much chock full of forum posts titled some variation of “Do spinal taps hurt?”, or “What’s it like to get a spinal tap?”, or “I need a spinal tap, and I’m scared” — but I can say with confidence that taps are not nearly as bad as they may seem. It’s completely legit to be frightened of the idea of them, but, in practice, they’re really not that scary.
Why might I need a spinal tap?
If your doctor(s) think you may have intracranial hypertension, a spinal tap is the only way to confirm their diagnosis. During a spinal tap, a doctor removes some cerebrospinal fluid (the fluid that cushions your brain and spinal cord) from your lower spine. While removing it, they also measure the fluid’s pressure. If your pressure is above normal, your fluid doesn’t show signs of infection, and an MRI or CT scan hasn’t indicated the presence of a brain tumor, that pretty much solidifies a diagnosis of intracranial hypertension.
You might also need a spinal tap if you suddenly experience symptoms of elevated cerebrospinal fluid pressure. Some things, like hormonal changes, medications, or changes in elevation, can cause your cerebrospinal fluid pressure to go up quickly. In these cases, you might need a spinal tap to remove the excess fluid and reduce your risk of optic nerve damage, seizure, or stroke.
In my case, I had not yet been formally diagnosed when I began having high pressure symptoms. I went to the emergency room at UC Davis in California, and a doctor there performed my tap. It alleviated my symptoms, and allowed them to give me a diagnosis and start me on Diamox.
How are spinal taps performed?
Spinal taps usually go like this:
- You’ll most likely be given an MRI or CT scan first, just to make sure there isn’t anything that might complicate the procedure. If you have Chiari malformation, it may increase your risk of experiencing a serious herniation. The doctor will need to know about that so they can decide how to proceed.
- You’ll be asked to lay on your side, with your knees drawn up to your chest. This lengthens your spine and widens the spaces between the vertebrae. It also ensures that the doctor performing the tap will be able to get an accurate pressure reading, as opposed to having you in a sitting position.
- The doctor will disinfect a spot on your lower back.
- They will then inject a local anesthetic into the area where they’ll be working.
- They’ll insert a thin needle between the vertebrae of the lower spine, below the end of the spinal cord.
- Fluid will be drawn through this needle, until either the doctor has enough for testing or your cerebrospinal fluid pressure drops to normal.
- If you’re having high pressure symptoms, you might notice a sudden and very dramatic decrease in your symptoms as the fluid is removed. You might also feel kind of dizzy and disoriented.
- The doctor will remove the needle, and place an adhesive bandage over the spot.
Do spinal taps hurt?
Getting a spinal tap is like going to the dentist — you’re awake, you can’t really see what they’re doing, and some parts of it kind of suck. As long as you’re properly anesthetized and the person performing it has a steady hand, drawing the fluid itself is pretty much painless. The injections of anesthetic kind of sting and burn, and your head might begin to feel a bit weird while the fluid is being drawn, but the needle itself usually isn’t all that bad. I felt mine a bit going in because we had to be a little light on the anesthetic, which hurt, but it was smooth sailing as soon as it was in place.
Afterward, you may have significant soreness in the area. Responses to a spinal tap can vary all the way from “I could’ve done this on my lunch break” to “I need to curl up somewhere for about three days or so.” The one I had at UC Davis wasn’t bad, but I had a lot of lower back and leg pain for a few days. Immediately afterward, I felt very dizzy and nauseated — my brain needed a little time to adjust to having all of that pressure taken off of it!
Are spinal taps considered surgery?
Spinal taps are considered a procedure, but not actual surgery. That said, when a doctor asks me if I’ve had any surgeries, I make sure to mention them anyway.
What is aftercare like?
Aftercare for a spinal tap is, from what I’ve gathered and experienced, largely based on your symptoms. If you have a headache, lay flat and drink caffeine (I can’t have caffeine, so it was laying flat and lots of icy cold headwraps for me). Don’t soak in the bath until you’re healed. If you experience loss of consciousness, seizures, or other serious symptoms, get thee to the ER with a quickness.
Sometimes, spinal taps don’t heal properly right away. Cerebrospinal fluid doesn’t clot, so blood platelets have to kind of seal everything off. If your doctor is a little too good at what they do, there may not be enough blood shed to do that. In this case, you may experience long-lasting headaches, symptoms of low cerebrospinal fluid pressure, or fluid leaking from the site. This can be fixed with a procedure called an epidural blood patch. Leaks aren’t too common, but leakage can happen and there are ways to fix it.
What risks are associated with spinal taps?
Let me preface this by saying that literally any time something enters your body, whether it’s a needle or a piece of food, there is a risk involved. Spinal taps may seem pretty hardcore, but they really don’t have that many risks associated with them. It’s logical to worry about things like, “Can I become paralyzed from a spinal tap?” but you are almost definitely going to be just fine.
If you’re allergic or sensitive to the anesthetic, you might have a reaction. Make sure you go over all of your allergies and sensitivities with the doctors and nurses before your tap takes place — I can’t have epinephrine and have issues with most caine anesthetics, so I have to be pretty careful.
As mentioned under “What is aftercare like?”, there’s a risk that the site of the tap might not heal properly. Keep an eye on your symptoms and, if you experience any of the ones in the list, head back to the hospital for a blood patch to correct it.
If your pressure is very high, there is a small risk of herniation. This happens when the pressure inside of the skull forces brain tissue down into the spinal cord. Symptoms include severe headaches, nausea, loss of consciousness, seizures, and possibly death. The risk of this is small, and, while there’s a chance it could happen, I have never (across six support groups) heard of it actually happening to someone.
Spinal taps are performed low enough that there really isn’t a risk of paralysis. Even though the needle enters the spine, it is performed below where the spinal cord ends so the risk of cord damage or paralysis is vanishingly small.
Since a spinal tap involves puncturing your skin, there is a risk of infection. The injection sites are so small, though, that this isn’t common. Keep the area clean and dry, and you’ll be a-OK. You probably won’t even need to replace the bandage they put on it.
Things I wish I knew when I had my first spinal tap:
- It’s really not going to be that bad.
- Don’t watch videos of how taps are performed until after you’ve had one, they look super weird and it’ll just make it easier to psych yourself out.
- Have a comfortable place near a bathroom where you can post up until you know how you’ll be feeling for the next few days. Try to avoid being stuck in an upstairs bedroom or too far away from a bathroom, just on the off chance that you’ll have back pain or trouble walking the first day or so.
- Showering might be difficult if you have a pretty bad post-tap headache or back pain. Have a container of wet wipes and a couple of sets of clean pajamas set up, just in case your regular hygiene routine is a little too much at first.
- Have a way to entertain yourself while you’re laying flat. Reading and T.V. might be tricky if you’re having a lot of dizziness, so have a nice, long podcast playlist set up and ready to go.
- Have some ginger ale, crackers, and other mild, nausea-soothing things available to snack on. Avoid eating your favorite comfort foods right afterward. You’ll probably be feeling crappy and want to indulge a little, but the last things you’ll want to associate with your favorite food are post-spinal-tap feelings.
If there’s anything I missed that you think might be valuable to add, please let me know in the comments!