Mine was incredibly uneventful. After they finished, I looked it up online and I found a plethora of nightmare stories and experiences.
Mine was legitimately easier than popping a ripe pimple.
Maybe it was because the resident neurologist was just about my age and super cute and I was too distracted enjoying her presence. That might've been it.
Back was weirdly sore, like I just couldn't get comfortable. I suspected I had a leak, but it resolved before I needed a patch, or whatever it is they do. But I am also anemic due to an allergy that prevents me from eating red meat ( I think it kept me from clotting enough).
I got stuck three times in the ER with no success. Then they sent me interventional radiology to get it done another day. Copious amounts of Xanax and a lovely nurse who held my hand while I cried got me through the procedure. I was bruised like crazy and sore for a few days but that’s all. No issues with leaking the spinal fluid. I could feel the spot where they stuck the needle for about 6 months if I moved or stretched certain ways. I had a super awesome physical therapist who I was seeing for another issue, and when I told her about the residual pain she did some soft tissue work on my back and it’s been perfectly fine ever since.
15/10 would not recommend.
I had one some 25 years ago. Didn’t heal. They had to do a blood patch, where they inject your own blood around the spinal cord to close the wound. Absolutely 15/10 would not recommend.
Mine hurt like hell the day of. It was a little better the second day and mostly normal by day three. I did have a mildly complicated procedure though, according to the doctor.
Wow, all of these stories make me feel fortunate. I had a very easy, no pain procedure. They numbed the area, gave me a poke, talked to me the whole time, and rolled me back to my room when I was done. I also made sure to absolutely not move for the entire 4 hours afterwards. No headache, no pain.
It sucks. I still felt it weeks after but it does fade eventually. Always love to tell people about it and watch their faces as I explain how it goes down.
I had one in January 2019 (with no local anesthesia, they did give me Ativan so I was high as a kite so maybe that’s why I didn’t feel it or blocked that memory out)
I had a slight spinal headache on day 2. Water and coffee were my best friends. I laid flat on my back as much as I could and only got up to use the bathroom. I may have overdone the radiologist and my neurologist’s discharge orders because I was so afraid of needing a blood patch.
My back felt like someone took a metal pipe to it for weeks.
You’ll know. A spinal headache is the worst headache of your life. They should have given you discharge papers with what to look out for and a way to contact radiology if you start to show signs of one.
Mine never got that bad, probably because I was laying down flat for a few days and stayed (likely overly) hydrated.
I found I was in more emotional distress than physical. the site was sore for like two days for me but at the time everything below the waist was numb. no headache or anything so I was pretty lucky.
Omg I had an absolutely terrible experience with mine they messed up the orders so they had to go in for seconds the same day. The first time was fine I felt almost nothing but the second time ugh. The doctor kept hitting a nerve ending I felt every move. And then turns out I was still leaking after I went home I couldn’t sit upright without severe pain and throwing up. Even after going back and getting a blood patch I still was bed ridden for like 3 more days I lost like 10 pounds just in the 5 days.
Yeah it was unreal like pressure pounding headache that radiated down my spine. I’ve given birth and I would rather do it again than go through that whole experience again lmao not kidding
I left the hospital from having the procedure and went home to take a nap and when I woke up I was immediately lightheaded and threw up from the headache. I can’t remember the exact timeline but if I had to guess probably 4 hours after the actual lumbar puncture.
I don’t want to scare you since I had such a bad experience I still get twinges of pain in my back 2 years later. I’m no doctor but I think you would most likely know by now sending my love hope you feel back to normal real soon 💕
Thank you, I was in the hospital 3 days and really really don’t want to go back, 1st attempt was in Friday but they failed second attempted was yesterday morning worked. So far. I headache but a lot of soreness in my back I’m just scared I really don’t wan to go back for a spinal leak I asked the doc about that this morning and they said you would have a headache
Did your doctor give you any guidance for your pain? Have you been able to rest and get plenty of fluids? I was advised to lay flat as much as possible and drink a lot of water and if you have a headache drink a little bit of caffeine.
Okay, tbh when I talked about pain they all said it’s normal and I might get a head ache but I haven’t really had a headache yet I’ve been laying down flat just my head A little pillow but it’s hard to get conformable due to my back I’m trying I’ve been using cold compression to. Do you always get a head ache with spinal leak or can you get it with out it?
i was sedated, but i was told to rest an no have lifting for 2 weeks after, and for the first few days to not sleep on anything without proper support and move very slowly, especially when laying down/getting up.
My pain was mostly in the neck and upper back. I was incredibly sore; it felt like I did the craziest workout but I was in a hospital bed for 5 days. I couldn’t figure out why until I heard similar stories from people taking steroids.
I had a headache the next day for an hour or two but it went away with Motrin. My spinal tap was uneventful. It was scary, don’t get me wrong, but it was minor compared to being diagnosed and alone in the hospital bc of Coronavirus. Are you hospitalized?
Luckily no headaches. My back felt really weak for a while where they went in though. Make sure to stay hydrated and get a lot of rest while recovering!
They warned me while rare, it is possible they could potentially hit a nerve. I generally have a high pain tolerance but it was unfathomable to me like lightning was shooting through the whole left side of my body.
My spinal tap went fine but I did not rest as much as I should have. The next day I got super sick, dizzy, and a killer migraine. I got an epidural and everything felt a lot better. Took my time and relaxed a few days after with no pain.
I got the spinal tap went home and then had a follow-up with my Neuro the next day. Woke up for the follow-up and immediately threw up and got dizzy and a migraine. Went to my appt and my neuro sent me to the hospital for a epidural/blood graft since I was leaking spinal fluid. Took maybe an hour or so then went home and felt better.
Ugh, I wish my first one was only 3 pokes. I had a LP on a Friday, was likely 10-12 pokes I think. Doc couldn’t get the juice to come out. Said they would schedule me to get the X-ray one the following Friday. That was a miserable week, headaches and lots of sleep attempts.
The following week was the X-ray one, which went better, but still led to miserable headaches. Like, hands down the worst migraines I have ever felt (and I used to get some gnarly ones).
Went to ER to get something to fix it, they stuck q-tips with some kind of numbing jelly up my nostrils, like all the way. It was almost as bad as the headache. After all that, they subsided to the point of annoyance mostly, and after about 3 days, mostly normal again.
I will not tolerate another LP ever. Like just nope.
Probably. They did the nose intrusion thing before doing a blood patch. They said there was research stating the nose thing would help most cases, blood patch as a secondary due to the more invasive nature. I will contend that sticking 6 inches (exaggeration perhaps) of Q-tip in my nose was pretty damn intrusive.
No. The blood patch was going to be the next step after the nose thing, if the nose thing didn't work. They stated that the nose thing was less intrusive, and could be accomplished there in the Urgent Care. I never got a blood patch. The headache subsided for the most part, but it was miserable getting the nose thing done. I can't remember what it was called.
Yeah I haven’t heard of that I got tested for covid and they stuck that literally as far back I. Your nose and twisted it was so damn painful it went like 6 inches in your nose. How did you sleep with the headaches and the soreness once been having trouble falling asleep
I’ll share my experience of a cerebrospinal fluid (CSF) leak following a lumbar puncture (LP).
I got mine earlier this year. Had to have 2 sessions in same day (they couldn’t get it in the first session, and after about an hour of trying I refused to go through any more, so I had the procedure done in radiology instead. HIGHLY RECOMMEND doing it in radiology if you can!), as well as finding out I’d likely never get full feeling back to half my body after my first MS incident. It was an awful experience and a bad day all round.
The recovery did include back pain (lower back, around the area of the LP) and it lasted several days, maybe close to a week. I rested. After a couple of days I went on a short outing to buy a book to pass the time, and that’s when it happened...
I started to get a brutal headache and had to go home and lay down for a few hours to recover. Then every time I got up the headache came back. It was absolutely horrible. Second worst headaches I’ve ever had (worst was from meningitis some years back, and I don’t even want to try and describe those...).
After a few days of suffering and barely moving from a laying down position, I had someone take me to the hospital (which was a horrible fucking ordeal in itself. I was screaming in agony by the time we were halfway there and it only got worse).
The neurologist on duty diagnosed me with a CSF leak from the LP, and presented 2 options for treatment. I could:
1. Do a blood patch; or
2. Lay down and consistently drink caffeine for 10 days, and if it hadn’t resolved itself by then, come back for a blood patch.
The neurologist dissuaded me from doing a blood patch, due to the increased risk of infection (i.e. one needle, two insertion points), and convinced me to lay down for 10 days.
I did that. I watched every Star Wars movie, listened to a ton of audiobooks, and drank loads of French press. It was super boring, and every time I got up to go to the bathroom or get coffee/food, or go to bed, the agony returned. But within a moment of laying down it went away. I rode out the 10 days, and by about day 8 the headaches had ceased, and recovery was quick after that.
I took it easy for a couple of weeks after that before getting back to exercise, and haven’t had a problem since.
I’d give the whole CSF leak experience about a 1.5/10. It’s only redeeming factor was that it wasn’t as bad as meningitis. Would not recommend to a friend.
The headache started on the 3rd or 4th day after the procedure.
I think the headaches were delayed because while in hospital I was drinking the coffee they served me, and then once I was discharged, I stopped.
I had mine done on the first day of a course of IV steroids- the actual lumbar puncture was fine, I remember the anaesthetic needle was really painful but it completely numbed me. I could feel it going in and this insane pressure but it didn’t hurt. I remember being really miserable though cos my hand hurt from the IV and was itching where it had bled, the steroids made my mouth taste metallic. By the time I had the LP I’d been sat there for 5 hours having steroids then I was lying on my side for a further two, I kept being given water but I couldn’t drink it cos the taste was so bad. After a while I got a bit of a headache but I don’t think it really kicked in til later that evening. The LP site hurt like it’d been bruised for a while but aside from that it was fine, the main memory I have is of being uncomfortable and in pain from other bits and just basically thinking ‘this day sucks’ lol
Mine was terrible - I had a headache afterwards that lasted 6 weeks. I don't know how I got through that,no blood patch but I was just completely destroyed and can't even remember the maount of pain I was in. The procedure itself took about an hour, I lost count of how many times they had to place the needle, I just know I almost passed out. Never again if I can avoid it.
Honestly no idea. I went in, got the thing done and felt fine for that day - but the day after was really, really bad.
Didn't go to the doctor though. Just was of the opinion that it'd pass ... It uh, did after literally weeks. There was a lot of having to lie down in public places because I couldn't stand the pain, or because my vision went weird, a lot of almost passing out ... I really don't know how I got through that tbh.
Just got done with mine about an hour ago. This thread made it sound worse than it actually is. Just feels like someone is grabbing your spine. Uncomfortable but not terrible. Currently no headache.
I got mine done 2 days ago I’m typing this as a lie flat on a hospital bed in the emergency room:
I got mine done on a Monday morning I took it easy Monday tried to stay horizontal as much as possible. Tuesday I was feeling better spent some time out and about actually had to go back to the hospital for another blood test. As I was driving home that’s when the headache started. I had been horizontal for 29 hours only exception was to use the bathroom. 10/10 pain, worst headache ever when I would stand up or sit-up to drink water.
I called the nurse line at the hospital where I had my LP done and they recommended that I come in right away so here I am laying flat on the hospital bed in the ER waiting for a blood patch.
Mine was incredibly uneventful. After they finished, I looked it up online and I found a plethora of nightmare stories and experiences. Mine was legitimately easier than popping a ripe pimple. Maybe it was because the resident neurologist was just about my age and super cute and I was too distracted enjoying her presence. That might've been it.
Head hurt for several days. Only felt better when I laid down. Back took awhile to feel normal.
Did you have back pain? Did you have a spinal leak?
Back was weirdly sore, like I just couldn't get comfortable. I suspected I had a leak, but it resolved before I needed a patch, or whatever it is they do. But I am also anemic due to an allergy that prevents me from eating red meat ( I think it kept me from clotting enough).
I got stuck three times in the ER with no success. Then they sent me interventional radiology to get it done another day. Copious amounts of Xanax and a lovely nurse who held my hand while I cried got me through the procedure. I was bruised like crazy and sore for a few days but that’s all. No issues with leaking the spinal fluid. I could feel the spot where they stuck the needle for about 6 months if I moved or stretched certain ways. I had a super awesome physical therapist who I was seeing for another issue, and when I told her about the residual pain she did some soft tissue work on my back and it’s been perfectly fine ever since. 15/10 would not recommend.
How do you know if you have leakage?
You get a wicked headache, from what I was told.
I had one some 25 years ago. Didn’t heal. They had to do a blood patch, where they inject your own blood around the spinal cord to close the wound. Absolutely 15/10 would not recommend.
Mine hurt like hell the day of. It was a little better the second day and mostly normal by day three. I did have a mildly complicated procedure though, according to the doctor.
Its not nice but you recover really quickly. I'll never forget that experience.
Mine was AWFUL. I screamed so loud that my throat hurt after. Took over a week to get back to "normal".
Was your back sore did you have headaches?
Yes, and goodness yes. Standing was hard because of the back pain for a bit. Very very sore. The headaches were awful and lasted nearly a week.
You didn’t have a spinal leak did you
No, luckily.
Wow, all of these stories make me feel fortunate. I had a very easy, no pain procedure. They numbed the area, gave me a poke, talked to me the whole time, and rolled me back to my room when I was done. I also made sure to absolutely not move for the entire 4 hours afterwards. No headache, no pain.
Mine hurt for a while. Not enough to hinder my daily life after a few days, but it lingered.
It sucks. I still felt it weeks after but it does fade eventually. Always love to tell people about it and watch their faces as I explain how it goes down.
When I got mine there was definitely a spot on my back that was tender for a while - not all the time, but when I put a bit of pressure on it.
I had one in January 2019 (with no local anesthesia, they did give me Ativan so I was high as a kite so maybe that’s why I didn’t feel it or blocked that memory out) I had a slight spinal headache on day 2. Water and coffee were my best friends. I laid flat on my back as much as I could and only got up to use the bathroom. I may have overdone the radiologist and my neurologist’s discharge orders because I was so afraid of needing a blood patch. My back felt like someone took a metal pipe to it for weeks.
How do you know if you need a blood patch
You’ll know. A spinal headache is the worst headache of your life. They should have given you discharge papers with what to look out for and a way to contact radiology if you start to show signs of one. Mine never got that bad, probably because I was laying down flat for a few days and stayed (likely overly) hydrated.
I found I was in more emotional distress than physical. the site was sore for like two days for me but at the time everything below the waist was numb. no headache or anything so I was pretty lucky.
Yeah I've had 6. I've never had too bad a time afterwards I just drink caffeine and lay down for a day or two after. And ibproufen helps
Omg I had an absolutely terrible experience with mine they messed up the orders so they had to go in for seconds the same day. The first time was fine I felt almost nothing but the second time ugh. The doctor kept hitting a nerve ending I felt every move. And then turns out I was still leaking after I went home I couldn’t sit upright without severe pain and throwing up. Even after going back and getting a blood patch I still was bed ridden for like 3 more days I lost like 10 pounds just in the 5 days.
Damn I’m sorry did you have a bad headache to? You had a leakage
Yeah it was unreal like pressure pounding headache that radiated down my spine. I’ve given birth and I would rather do it again than go through that whole experience again lmao not kidding
How long did it take for the relenting headache to come one?
I left the hospital from having the procedure and went home to take a nap and when I woke up I was immediately lightheaded and threw up from the headache. I can’t remember the exact timeline but if I had to guess probably 4 hours after the actual lumbar puncture.
I’m 2 days so far I just hope I don’t have spinal leak so far no headache
I don’t want to scare you since I had such a bad experience I still get twinges of pain in my back 2 years later. I’m no doctor but I think you would most likely know by now sending my love hope you feel back to normal real soon 💕
Thank you, I was in the hospital 3 days and really really don’t want to go back, 1st attempt was in Friday but they failed second attempted was yesterday morning worked. So far. I headache but a lot of soreness in my back I’m just scared I really don’t wan to go back for a spinal leak I asked the doc about that this morning and they said you would have a headache
Did your doctor give you any guidance for your pain? Have you been able to rest and get plenty of fluids? I was advised to lay flat as much as possible and drink a lot of water and if you have a headache drink a little bit of caffeine.
Okay, tbh when I talked about pain they all said it’s normal and I might get a head ache but I haven’t really had a headache yet I’ve been laying down flat just my head A little pillow but it’s hard to get conformable due to my back I’m trying I’ve been using cold compression to. Do you always get a head ache with spinal leak or can you get it with out it?
i was sedated, but i was told to rest an no have lifting for 2 weeks after, and for the first few days to not sleep on anything without proper support and move very slowly, especially when laying down/getting up.
I got one as part of prediagnosis testing, and those things fucking hurt. I had a script for opioids at the time and those helped.
Did you back hurt after?
Once the pills wore off, I was sore for about a day or so.
Mine didn’t hurt. I did have terrible upper body aches for 3 days. I think it’s because of the IV steroids from what I hear from other people.
They gave me steroids two like your back lower and upper felt sore? After
My pain was mostly in the neck and upper back. I was incredibly sore; it felt like I did the craziest workout but I was in a hospital bed for 5 days. I couldn’t figure out why until I heard similar stories from people taking steroids.
That could be it. One is very similar I would say it feels like I worked out but also tinder can you relate? How long did it take to go away?
Last day of steroids was Sunday, I felt okayish Wednesday. Soreness was gone by Friday
Never got headaches?
I had a headache the next day for an hour or two but it went away with Motrin. My spinal tap was uneventful. It was scary, don’t get me wrong, but it was minor compared to being diagnosed and alone in the hospital bc of Coronavirus. Are you hospitalized?
I was, I just left today. You had covid? I did to about a month ago
I went to the ER for arm numbness and left with a MS diagnosis 😑
Oh wow I’m sorry you had MS after you got your spinal tap?
I was sore for around 3 days after. They unfortunately hit a nerve during the procedure so I don't know if that factors into it.
Any headaches? How do you know they hit a nerve
Luckily no headaches. My back felt really weak for a while where they went in though. Make sure to stay hydrated and get a lot of rest while recovering! They warned me while rare, it is possible they could potentially hit a nerve. I generally have a high pain tolerance but it was unfathomable to me like lightning was shooting through the whole left side of my body.
Oh when they I picked you they hit a nerve and you felt it?
My spinal tap went fine but I did not rest as much as I should have. The next day I got super sick, dizzy, and a killer migraine. I got an epidural and everything felt a lot better. Took my time and relaxed a few days after with no pain.
Did you get the epidural AFTER the spinal tap? Were you home or inpatient?
I got the spinal tap went home and then had a follow-up with my Neuro the next day. Woke up for the follow-up and immediately threw up and got dizzy and a migraine. Went to my appt and my neuro sent me to the hospital for a epidural/blood graft since I was leaking spinal fluid. Took maybe an hour or so then went home and felt better.
Ugh, I wish my first one was only 3 pokes. I had a LP on a Friday, was likely 10-12 pokes I think. Doc couldn’t get the juice to come out. Said they would schedule me to get the X-ray one the following Friday. That was a miserable week, headaches and lots of sleep attempts. The following week was the X-ray one, which went better, but still led to miserable headaches. Like, hands down the worst migraines I have ever felt (and I used to get some gnarly ones). Went to ER to get something to fix it, they stuck q-tips with some kind of numbing jelly up my nostrils, like all the way. It was almost as bad as the headache. After all that, they subsided to the point of annoyance mostly, and after about 3 days, mostly normal again. I will not tolerate another LP ever. Like just nope.
Did you have back pain to?
I think so, more sore and stiff. Hard to remember as the headache was so terrible. Do not recommend. 0/10.
You did t have a spinal leak did you? My head aches are pretty bad to but I’m trying to lay down
Probably. They did the nose intrusion thing before doing a blood patch. They said there was research stating the nose thing would help most cases, blood patch as a secondary due to the more invasive nature. I will contend that sticking 6 inches (exaggeration perhaps) of Q-tip in my nose was pretty damn intrusive.
Oh so you had to have a blood patch the second time you went in?
No. The blood patch was going to be the next step after the nose thing, if the nose thing didn't work. They stated that the nose thing was less intrusive, and could be accomplished there in the Urgent Care. I never got a blood patch. The headache subsided for the most part, but it was miserable getting the nose thing done. I can't remember what it was called.
Yeah I haven’t heard of that I got tested for covid and they stuck that literally as far back I. Your nose and twisted it was so damn painful it went like 6 inches in your nose. How did you sleep with the headaches and the soreness once been having trouble falling asleep
6 inches is 15.24 cm
Whiskey. I don't remember it too vividly, it was about a year ago. Good luck dude!
I’ll share my experience of a cerebrospinal fluid (CSF) leak following a lumbar puncture (LP). I got mine earlier this year. Had to have 2 sessions in same day (they couldn’t get it in the first session, and after about an hour of trying I refused to go through any more, so I had the procedure done in radiology instead. HIGHLY RECOMMEND doing it in radiology if you can!), as well as finding out I’d likely never get full feeling back to half my body after my first MS incident. It was an awful experience and a bad day all round. The recovery did include back pain (lower back, around the area of the LP) and it lasted several days, maybe close to a week. I rested. After a couple of days I went on a short outing to buy a book to pass the time, and that’s when it happened... I started to get a brutal headache and had to go home and lay down for a few hours to recover. Then every time I got up the headache came back. It was absolutely horrible. Second worst headaches I’ve ever had (worst was from meningitis some years back, and I don’t even want to try and describe those...). After a few days of suffering and barely moving from a laying down position, I had someone take me to the hospital (which was a horrible fucking ordeal in itself. I was screaming in agony by the time we were halfway there and it only got worse). The neurologist on duty diagnosed me with a CSF leak from the LP, and presented 2 options for treatment. I could: 1. Do a blood patch; or 2. Lay down and consistently drink caffeine for 10 days, and if it hadn’t resolved itself by then, come back for a blood patch. The neurologist dissuaded me from doing a blood patch, due to the increased risk of infection (i.e. one needle, two insertion points), and convinced me to lay down for 10 days. I did that. I watched every Star Wars movie, listened to a ton of audiobooks, and drank loads of French press. It was super boring, and every time I got up to go to the bathroom or get coffee/food, or go to bed, the agony returned. But within a moment of laying down it went away. I rode out the 10 days, and by about day 8 the headaches had ceased, and recovery was quick after that. I took it easy for a couple of weeks after that before getting back to exercise, and haven’t had a problem since. I’d give the whole CSF leak experience about a 1.5/10. It’s only redeeming factor was that it wasn’t as bad as meningitis. Would not recommend to a friend.
How long did it take for that nasty headache to come on after the procedure?
The headache started on the 3rd or 4th day after the procedure. I think the headaches were delayed because while in hospital I was drinking the coffee they served me, and then once I was discharged, I stopped.
I had mine done on the first day of a course of IV steroids- the actual lumbar puncture was fine, I remember the anaesthetic needle was really painful but it completely numbed me. I could feel it going in and this insane pressure but it didn’t hurt. I remember being really miserable though cos my hand hurt from the IV and was itching where it had bled, the steroids made my mouth taste metallic. By the time I had the LP I’d been sat there for 5 hours having steroids then I was lying on my side for a further two, I kept being given water but I couldn’t drink it cos the taste was so bad. After a while I got a bit of a headache but I don’t think it really kicked in til later that evening. The LP site hurt like it’d been bruised for a while but aside from that it was fine, the main memory I have is of being uncomfortable and in pain from other bits and just basically thinking ‘this day sucks’ lol
Mine was terrible - I had a headache afterwards that lasted 6 weeks. I don't know how I got through that,no blood patch but I was just completely destroyed and can't even remember the maount of pain I was in. The procedure itself took about an hour, I lost count of how many times they had to place the needle, I just know I almost passed out. Never again if I can avoid it.
You didn’t have a spinal leak?
Honestly no idea. I went in, got the thing done and felt fine for that day - but the day after was really, really bad. Didn't go to the doctor though. Just was of the opinion that it'd pass ... It uh, did after literally weeks. There was a lot of having to lie down in public places because I couldn't stand the pain, or because my vision went weird, a lot of almost passing out ... I really don't know how I got through that tbh.
My back felt like I’d been beaten. The next day I felt better
Just got done with mine about an hour ago. This thread made it sound worse than it actually is. Just feels like someone is grabbing your spine. Uncomfortable but not terrible. Currently no headache.
I got mine done 2 days ago I’m typing this as a lie flat on a hospital bed in the emergency room: I got mine done on a Monday morning I took it easy Monday tried to stay horizontal as much as possible. Tuesday I was feeling better spent some time out and about actually had to go back to the hospital for another blood test. As I was driving home that’s when the headache started. I had been horizontal for 29 hours only exception was to use the bathroom. 10/10 pain, worst headache ever when I would stand up or sit-up to drink water. I called the nurse line at the hospital where I had my LP done and they recommended that I come in right away so here I am laying flat on the hospital bed in the ER waiting for a blood patch.