Forum

If you are waiting for a lumbar puncture - please read!!

Hi all! I was told just before Christmas that there was a strong (98%) possibility that I have ms, after an MRI, but was being sent for a lumbar puncture to confirm diagnosis. I was petrified!! Being the tv addict that I am, I am only too aware of how this procedure is portrayed in medical dramas…and it ain’t good! I have to say, I was so scared about it, about the pain during the procedure, the headaches and back ache after, the possible risks that went along with the test… Well, I had mine done on Thursday, and it’s not Saturday, and I can safely say that it was nowhere near as bad as I expected. Now, don’t get me wrong, I know some people have horrible experiences, but they tend to be the only ones to write about it, in the same way when you go to a restaurant, majority of the time, if you have a nice meal and good experience, you tend to leave it at that, but if you have a horrible meal and shoddy service, you want everyone to know about it! So I am going to tell you how my experience went, in the hope that it will give those who are awaiting the procedure a little confidence and encouragement, that it really wasn’t so bad, for me anyway! My appointment was at 10.15am in the ramone building in craigavon hospital, so we got there about 20 minutes early. I brought my fiancé and sister along for support, but they were not allowed in the room with me. The nurse, Margaret, took me into the room, which was a private bed on a ward. When she came back she told me I looked like a bunny rabbit caught in headlights and with that I bust into tears! I told her how scared I was of the lumbar puncture and in general about having ms. It just happened that she used to be an ms nurse, and was really kind and comforting to me, talking about treatment and how ms patients have a better way of life now than they did 10 years ago, and imagine what it will be like in another 10 years time! She took my blood pressure and monitored my pulse. The doctor then came in, who explained the whole procedure to me again, as I had to give whats called ‘informed consent’ and basically explained exactly what would happen, the possible side effects, and the possibility that it might not go to plan, and why - they may not be able to do it, risk of infection, numbness and drop foot etc. Then, I got onto the bed with my back closest to the side the doctor was on, and tucked my top into my bra, while the doctor put some protective tissue around my jeans. She then cleaned my back with a solution, let it dry, and repeated the process a few more times - turns out my doc had a bit of cleanliness OCD, which can’t be a bad thing! She then placed a bit of sticky plastic on me, which would basically protect my clothes and that. She told me they use the same anesthetic that the dentist uses, and asked if I had any problems with it. I told her that my dentist was always jokingly giving out to me because he had to keep giving me more because it wasn’t strong enough. So instead of giving me 1mg, she gave me 2mg dosages instead. The first injection was literally just a tiny scratch, and that was to numb the first part of my back. Then, when that set it, she gave me a second injection, which would numb deeper in. After letting that set in, I curled into a ball, making my back into a ‘C’ shape, and she hagan inserting the lumbar puncture needle. I won’t lie, I felt a good bit of pain, but once I told her, she quickly withdrew the needle and gave me another anesthetic. At this stage I was very glad I told her about what my dentist said!! She was very comforting and said we would wait for another minute, even though it should already have set in, just to make sure. At this stage the nurse is talking 90 to the dozen to your face!! Her job is to distract, and she did a great job, nattering away with me! So once she started the lumbar puncture again, all I could feel was something pressing on my back, but couldn’t feel a needle or anything like that. No pain!! It lasted about 10 minutes! After, the doctor cleaned my back again and took off the plastic and asked me to roll slowly onto my back. After a few minutes, they raised the head of he bed, and told me that the whole lying flag thing is a myth!! Inlay up watching them sorting the samples and the had to give some blood from my arm, but this doesn’t bother me at all. Then I got a look at my spinal fluid - they literally just take a dribble - and at the needle itself! You don’t have to do this, it just works better for me like that!!! After lying talking to them for about 20 mins, the doctor asked me sit up, then stand up by myself, and that was me, good to go!! I went home, advised to drink at least 3 liters of water each day for the next few days. And if I had a sore head drink caffeine and loads of rest, but at the same time, if I felt ok, I was gone to keep moving as normal, just nothing to heavy, like hoovering - which is fine by me! Later, my back did get a little tender, but just felt a little bruised, and a headache behind my left eye came and went, but it was nothing unbearable! I have had sorer backs in the past!! So, I hope telling you my experience makes you feel a little better about your upcoming procedure. And remember, it is different for everyone! I wish you all the best on your journey Smallie xxxx

1 Like

Wow I’m glad all went well for you x

I had a LP. On Tuesday. Same as you,it was not half as bad as I was expecting it to be. I did have painful pins and needles in my legs a couple of times, but it only lasted a second. I have been suffering quite bad with headaches since, but when I rest they completely disappear. The hardest thing I found was trying to stay in the curled up position.For anyone waiting to have an LP, it’s honestly not that bad (I promise) :slight_smile: Abbie x

Hiya, Thank you for this I’m having one on Wednesday I’ve known for a bit but swore I wouldn’t look anything up!!, I came on here to talk about something else and this just caught my eye straight away!, hope it’s a sign. I have the Thursday off work do u think that’s enough?. I’m hoping so I’m a hairdresser and booked up fri/ sat!!. Thanks again Xx

Hi Lisa. I work in a grocery shop, so, similar to yours, I am on my feet all day, the only difference is I do a lot of heavy lifting etc. the nurse and doctor both told me to take it easy for a few days. I booked off work til the Monday after, and, to be honest, I was a little sore and tired after work on Monday. I don’t know wether that was because I had had a few days off, or because of the LP. Do you have a back up plan in place, just in case? I hope everything goes well for you on Wednesday!!! Xxxx

Hello, Well if I’m do bad I just won’t go in! I work late on a fri so maybe I may shorten my day Thanks again for advice Bit nervous now X

Mine is on the 24th thank you for setting my mind at rest. X

Thank you so much for this, Am waiting for a date for mine, so this has really made me feel a lot better about it.

My main concern is laying on my side, due to severe balance/vertigo issues, as this is the worst position for me. I shall just have to grin and bear it, and hope they understand when I take time to be able to sit/stand up when they’ve finished with me!

Purpledot : I had mine today and I can honestly say the thought is far worse, I’m fine with needles so I think this helps but if you’ve had a baby, this is far worse too. The biggest pain is I’m now sat with a banging headache and my back is hurting a bit. The whole procedure was very straight forward and I didn’t even go into theatre ! I had it done in a ward on the bed and the doc was very informative and very thougher. I would not be worried in the slightest if I had to have it done again it’s far worse going to the dentist!. Smilie21 describes the events very well, I too only felt a slight “popping” sensation. Good luck everyone Cx

I too was very worried when told I needed a L.P. I have worked as a nurse for many years and had vague memories of seeing it done and it looking very painful. However, it was nowhere near as bad as I though. A few seconds of pain when the local anaesthetic went in and later a few more seconds of discomfort. I drank a lot of water afterwards and a couple of cans of diet coke. My back felt a little bruised for a few days and I had no significant headache. I agree that it is far worse going to the dentist - at least you are not looking at what they are doing!

Thank you so much for writing this! I have been worrying myself sick at the thought of it due to all the horror stories! It’s bad enough worrying about a potential MS diagnosis without having to worry about this too! I have mine next week and this has put my mind a wee bit at ease

1 Like

Hi, I have not yet got my date for LP but am very worried about it. I am not too concerned about the actual procedure but am very worried about getting The Headache afterwards and it taking ages to go, if at all! There are all sorts of horror stories on internet about it, I should just quit reading them! ha

Wow, I’m suprised at how many people had a good experience with an LP! I must have been very unlucky, if I didn’t have a tube into my spine I think I would have turned round and punched the doctor in the face, the discomfort for me was indescribable. I usually have ‘mind over matter’ going on. Didn’t work on that occassion.

I took 3 days for the initial recovery (didn’t take them off work, but I should have) thankfully no head aches, pins and needle, sciatica and a sensitive, bruised feeling at the site of the LP though. Could be worse.

I think its good to educate yourself on these procedures, makes you aware of the worst, then when its over, wonder what all the fuss is about.

Hope you all have/have had easy ones!

Nikki

Wow…must have been one of the unlucky ones…my procedure was perfect, no pain whatsoever. I then laid down in hospital for 3 hours drinking fluids. I felt pretty good that night and then it started…i had acute headaches for a week, feeling nauseous and in pain if I was not lying down. Wishing everyone a smoother experience!

HI Purpledot

I had my latest lumbar puncture about a month ago. They asked me to sit with my legs over the edge of the bed and leaning on a pillow on one of those bed tray thingies. Maybe they could do it that way for you too? The first one I had many MANY years ago, I had to curl up on my side. I had no problems at all with it having it done either way - it really is the worrying about it that’s the worst bit.

After my first LP (which was about 35 years ago!) you had to lie down flat for a full 24 hours after the procedure. I had absolutely NO headache that time.

I had my second LP about four weeks ago - I had to lie flat for four hours afterwards but could then get up as normal. The morning AFTER that LP I started with the headache which was pretty awful…BUT it only hurt if I was upright. As long as you can rest and lie down if and when you need to, you will be just fine :slight_smile:

I had mine 4 weeks ago and was dreading it,but it was absolutely fine.

THe prodding to find the tight spot was annoying but that was all.

I sat up straight away and went home after about 10 minutes.

I did take a bottle of Coke with me and drank some on the way home and had no side effects at all.

I spent two days waiting for the headache but it did not appear.

Had lumber puncture yesterday fri 18/5/17 yes I was worried and scared prior ! To be honest it was ok helpful and was put at ease ! I had it done sitting up I found it difficult to lie on my side I have other problems ! This was done to find out if I have MS ?

But ive had the most painful headache, it’s still raging taken pills it won’t go away , I’d cough or bend , is this normal ? It’s so painful any help shift it would be good ! It’s constant and really painful can anyone help ? Having pluresy just getting over it if cough the pain in my head is bad ! Any help would be good !

Thank yoy

Hi,

With a lumber puncture you’re usually told to lay flat for as long as possible afterwards - whole day. I remember coming back in a car with the seat laid flat.

Another thing I heard of but didn’t try is to take caffeine, maybe worth a try.

Hope it eases off soon.

Jen

1 Like

Another LP thread for Tanya.

Great detailed description Smallie, thanks.

Jen x