Tell me about your lumbar puncture experience
June 26, 2022 6:54 PM   Subscribe

I have a lumbar puncture scheduled for a week and a half from now, and I'm sick with anxiety.

I have been having problems with my vision for a year now--my eyes go out of focus with each other intermittently throughout the day. If I cover one eye I can see fine out of the other, and vice versa. I can't drive , except for very short, simple hyper-local trips. because if I have an episode and have to close one eye I lose my depth perception.

I have been seeing a neuroopthalmologist and she's still stumped after 2 MRIs. Prisms on my glasses lenses do not help. The 2nd MRI showed inflammation in/around my medulla, so I have been referred to a neurologist. This may or may not be related to the vision issue, but must be checked out.

They want to do a lumber puncture. Can you please describe to me your own personal experience having one? Pain? Level of pain How long-lasting? Aftermath? Could you drive home?
posted by primate moon to Health & Fitness (16 answers total) 2 users marked this as a favorite
I have not had an LP but have performed hundreds.

You'll likely be lying on one side on a stretcher and will be asked to bring your knees up to your chest, as high as they will go. This helps to open up the vertebral spaces. Sometimes people do them sitting up, which is a lot more comfortable for the patient but you can't measure fluid pressure that way so most neurologists opt for the more accurate approach with pt lying down.

The doctor will feel your spine to identify the right location, probably about level with your hips. (This is well below the end of the spinal cord itself.) Then you'll hear a lot of noise as they open the sterile LP kit and sterile gloves.

They will prep the area with chlorhexidine (antiseptic, will feel cold) and place a sterile drape over the exposed part of your back. Some people use a numbing spray for the skin; everyone gets lidocaine injection for the subcutaneous tissue. It stings a little as it's going in but then you'll be numb just in that area in a few minutes.

You'll feel pressure as the LP needle is inserted. Sometimes we have to reposition, which is annoying but shouldn't hurt (if it does, tell the doctor and they'll give you more lido). If the the shaft touches a nerve you'll get an electric sensation down one leg -- if that happens definitely tell the doc so they can reposition. Once they get flash, you'll have to stay in position for a few minutes as they collect the fluid. Then you'll feel them remove the needle.

I typically tell people to lie flat for about an hour after, to minimize post LP headaches. Caffeine helps too. Your brain will have reupped its CSF in like 30-40 min and the hole seals pretty quick in most people People are generally ok to drive home after. If the hole doesn't seal on its own, they can do something called a blood patch which is exactly what it sounds like: seal up the hole with a vial of your own blood.

Good luck, and I hope you get a diagnosis soon!
posted by basalganglia at 7:24 PM on June 26, 2022 [17 favorites]

I have not performed an LP, but I've hurt people worse!

Long story, short version: I worked at a lab that was doing both LPs and neuropsych tests (cognitive psychological testing).

One particular cognitive test we administred seemed innocuous (subject would listen to words presented, repeat them back to us) but it was so terribliy stressful, that a number of subjects told us they would prefer the LP to the cognitive test.

This is not to say either is wonderful, but if you can imagine sitting in a room with a psychologist, repeating words from a tape recorder, then you may be more able to tolerate an LP than half of the population...

I think you'll be fine!
posted by soylent00FF00 at 7:29 PM on June 26, 2022

I had a lumbar puncture a few years ago, also due to finding a more conclusive answer around some vision problems. It was not as bad as I thought it would be, and I didn't think it would be all that bad anyway. Some pressure during the procedure but no pain, a slight headache after that resolved in a couple hours. I didn't drive myself home, wasn't driving anyway because of the vision problems. If it had only been the lumbar puncture, not the eye thing, I would have been fine to drive afterwards.
posted by dorey_oh at 7:44 PM on June 26, 2022

I had one three years ago. It wasn't bad, I had no significant pain and didn't need any recovery period. Like dorey_oh I was driven home, from caution as I didn't know what to expect and if I had another lumbar puncture I'd again ask to be driven though I could probably drive myself. (Fwiw I was much more nervous about cataract removal; even that was no big deal though again I didn't drive and it took 24 hours recovery.)
posted by anadem at 8:04 PM on June 26, 2022

I have not had an LP but I do get anxious…. Does your doctor know how stressed you are? If people are given anti-anxiety medication to get through dental work maybe you could do something similar?
posted by ticketmaster10 at 10:30 PM on June 26, 2022

I had an LP when they were trying to find the cause of a sudden onset severe headache. I was doped up on pethidine and didn't feel a thing. Afterwards, doctor confessed that it was his first unsupervised LP. He said that the thing that made it easier than usual was my ability to really curl my spine to create the access. Practice your yoga Child Pose in the days beforehand to help you limber up.
posted by Thella at 11:05 PM on June 26, 2022

If the the shaft touches a nerve you'll get an electric sensation down one leg -- if that happens definitely tell the doc so they can reposition.

I just had one last week. The actual needle part was fine, there was lots of local and it was painless. However, I don't mean to downplay anyone's professional expertise, but in my case the "sensation" was like being tasered repeatedly. I will not be having another one without 10mg of Valium on board. I would suggest you request from your doctor.
posted by DarlingBri at 2:06 AM on June 27, 2022 [4 favorites]

Here's a study on Valium before a LP. There are others, too, this is not a crazy request. I also read a study showing benzos reduced the electrical sensation but now I can't find it :(

PS: I also highly recommend drinking water beforehand, drinking Coke, coffee or other high-caff drinks immediately after to stave off headache, and laying flat on your back for an hour after. I had to drink my coffee flat on my back through a bendy straw but I'm glad I did.

Also a hot water bottle for home to just help my back un-clench was helpful.
posted by DarlingBri at 4:40 AM on June 27, 2022

I had two within a short period a couple of years ago. It was totally painleess. I was nervous but there was nothing to it. You can even wwatch it on the overhead screen if you want. No thanks! But chill - nothing to it.
posted by charlesminus at 7:24 AM on June 27, 2022

I've had a few over the years. Everything about the leadup to the puncture is intensely disturbing, but the procedure itself is mostly a nothing-burger. Try not to pay attention to the activity in the room around you as they're getting you prepped... once you see how big the needle is, you'll have a hard time NOT imagining it hurting a whole lot. If you're allowed, bring a book or your phone to bury your head in for the duration. Getting yourself properly positioned can take a little while, during which your anxiety will probably be spiking, so that would be a good time to employ your breathing exercises/calming measures.

If this is a scheduled procedure, it probably won't be terribly unpleasant. I've had flu shots that were more painful than a lumbar puncture performed by a skilled doctor.
posted by Mayor West at 7:34 AM on June 27, 2022

My partner went through almost a dozen LPs in the last year (f*ck cancer).

Their advice: call your Dr today and ask for supportive meds to manage your anxiety. Valium, xanax, whatever. This will require having someone drive you to/from the procedure but it's worth it.

Hydrating before hand helped their recovery as well.
posted by jenquat at 10:21 AM on June 27, 2022 [2 favorites]

I had one in 2016.

I was on a benzo, I think Ativan. My husband went with me, stayed during the procedure, and drove me home.

I was on a table, on my side, in the fetal position.

The PA who did the procedure used a needle to inject a local anesthetic. This part felt like a bee sting, from, as I put it at the time, "a big motherfucking bee." But it was over fast. We checked to make sure I was numb, then did a second shot of the anesthetic to be sure.

Then the procedure began. It didn't hurt, but it was definitely surreal. I knew right away that my opening pressure was normal and the fluid was clear, which was very reassuring. I had to wait about a week for the rest of the results.

I guess I'd describe it as feeling like a tree, being tapped for maple syrup. It was weird because it was mostly just waiting for all the fluid to come out, which took extra time because I volunteered to give an extra vial as part of a study. So we were making small talk with a nice lady who was sucking fluid out of my spine for about 15 minutes, while I was bombed on benzos. (I think we discussed gardening?)

Afterwards, I drank a Coke and laid flat in the car on the drive home. I got the post-procedure headache, probably because I have extra fluid, but was better in a day or two.
posted by champers at 11:18 AM on June 27, 2022

Popping back in to say that yes please ask for benzos if needed as they really do help with procedural anxiety, but if you do, make sure you have someone to drive you home afterwards!
posted by basalganglia at 2:27 PM on June 27, 2022 [1 favorite]

I had one about 5 years ago, and the lead-up was pretty weird as other people have noted. I don't remember the local anaesthetic hurting. The reason was due to a severe, rapid-onset headache that didn't disappear for several days, leading to concerns about a stroke.

I was sitting upright, leaning forward, to give access to my spine.

During the puncture I didn't feel the electric shock down my leg, but mid-to-late through the procedure I did have one of my legs start to twitch/shake. I thought it was because I was bent over forwards and putting unusual strain on myself.

Leaving the hospital after the procedure, and for over a year afterwards, I would be struck with sudden and inexplicable loss of control of my leg, nearly collapsing as a result. This has led to severe long-term lower back pain and abdominal strength issues, which physiotherapy has helped with.

It sucked. It sucked a lot. It still sucks. It fucked up my quality of life quite severely and I'm still not recovered. Pay very close attention to what your legs are telling you, to avoid complications.
posted by aurynn at 4:45 PM on June 27, 2022 [1 favorite]

I had an LP twenty years ago as part of getting diagnosed with MS. Others have described the process in plenty of detail so I won't repeat anything. Mostly I'm just here to say that it was by far the least painful invasive test I had as a part of my diagnosis. I barely remember it.
posted by jesourie at 6:20 PM on June 27, 2022 [1 favorite]

Response by poster: Thanks so much for all your responses. Hearing mostly positive to neutral expenriences and few negative ones made me much less anxious going in.

I had my lumbar puncture this morning. I took a clonopin before which helped. It was fine, even though there were a couple hiccups. No actual pain, but of course some weird kind of sickening feelings--not too bad. He had to actually try 3 times before getting access to the spinal fluid, but I chose to keep trying. I'm now exhausted and my lower back aches a little. But so far no headache. It was much better than I expected. Thanks, all!
posted by primate moon at 10:25 AM on July 6, 2022 [3 favorites]

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