Lumbar Puncture anyone?: As part of my ongoing... - LUPUS UK


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Lumbar Puncture anyone?

DaleDiva profile image

As part of my ongoing investigations it has been decided I need a lumbar puncture. Has anyone undergone one? As an ex nurse I know the theory but not the practical. I am aware the procedure is uncomfortable but what can I expect afterwards and how long will recovery take? Please be truthful but don't scare me :)

27 Replies

u're given an LA so r awake throughout. They generally get u lying in the foetal position & although it IS uncomfortable, I personally didn't find it painful. Afterwards make sure u lie perfectly flat (no pillows either!) 4 at least 2 hours 2 prevent the chronic headaches it can cause. Recovery is pretty quick as long as everything goes according 2 plan & u LAY STILL AFTERWARDS!!!!!!!!!! A headache is usual & a sore injection site. Ask 4 an anaesthetist 2 perform the LP if possible as they r the best 1's at doing them ;0)

Thanks Sher. Will have to practise drinking lying flat.... can't go 2 hours without a coffee!!

Lmao! U will have 2 hold it down beside u & use a straw ;0) Seriously, do not ignore this bit of advice. My LP was done by an SHO who basically buggered it up & that coupled with the fact that I wasn't lying completely flat 4 2 hours (I used ONE pillow & got up after about 1 3/4 hours 4 a wee) caused me 2 have a CSF leak which needed 2 b repaired with a blood patch (relatively simple procedure) but the week & a half I had 2 wait inbetween was pure Hell, it pales in comparison 2 anything I've ever experienced b4. I was just really unlucky as a CSF leak usually repairs itself in a few days but mine was just seeping out so bloody quickly & the SHO was so nervous & inexperienced (even though she told me she'd done loads of LP's) hence why I suggest asking 4 a confident Anaesthetist ;0)

When the secretary rang to book it she said she needed to make sure the neurologist was around as he had requested to be present so hopefully I won't get someone who is practising!

I have had 5 LP in four years, I was awake for all off them, I had good ones where I was talked through the whole process and bad ones where I had students experimenting on me like I was a piece of meat, and have ended up with a sore back and a sore head.

Ask the person doing it to talk you through the process, I had a tranquilliser once because I was in a lot of pain before hand - that helped good luck.

Luppychick x

after mine I had to lie for a little while, then was allowed home to lie flat for longer, apparently coffee can help to reduce the headache. hope it goes ok for you x

Recieved the literature from clinic today and it says you have to lie flat for at least an hour but can go home to continue resting. It says on there flutterby that caffiene helps reduce the headache. Think I will just spend the weekend after it in bed with a brew!

Sher78 profile image
Sher78 in reply to DaleDiva

sounds like a good plan ;0) All the best of luck with it, I'm sure u'll b fine :0)

I had one a few weeks ago. The practice now is local anesthetic. Make sure you go to the loo right before. I had a pillow to curl around, could not by myself get in to position so put my feet on the bed rail and that helped. You have to have your back right on edge of bed hence feet on the rail opposit to get spine really curled. You will feel the local needle and it stings a bit when they inject but other than that its ok. They might touch a nerve and you get a pain down your leg like bad pins and needles. Say ouch and they pull back. Ask how many LP's they have done, any less that 3 ask for somebody else. My doc said they don't think the 4 hour thing makes a difference anymore but I did it anyway. My back was sore and a little bruise after but not to bad (I have a bad back and it didn't affect) I think my joint were worse from being in a tight position for so long, they had to help me get out of the position as I had seized up. I have a phobia of needles and had a nurse hold my hand which helps me that way but other than that it was ok.

Hope everything goes ok for you. Good luck Helen

What is the purpose of the LP; what symptoms are you having that has led to this? Just curious....

roobarb profile image
roobarb in reply to fordo

I wondered this too. I hope you will let us know how you get on, & what the eventual result of the test are DD? All the very best. X

To rule out other neurological diagnosis. Because my symptoms could also be other diseases they are doing the LP to rule those out. Plus as far as I can gather there are antibodies in the CSF if it is Lupus

I had one but it was a long time ago (2001). The best advice I was given was to get myself as relaxed as I possibly could. In fact, this advice holds good for ANY medical procedures we have to undergo. The thinking is that if your body is tense the pain will be worse, I have always found this to be so! Anyway, back to the lumbar puncture. I lay on my side as close to the end of the bed as I could get. A nurse sat facing me holding my hands and chatting quietly to me while the doctor worked behind me. They explained everything that was going to happen and said it would be uncomfortable - which it was - but not necessarily painful. And it wasn't. I never had any nasty after effects either. I hope it all goes well for you DaleDiva - and like I said try to get yourself as relaxed as possible! Good luck!

They r usually done if the feel the lupus is affecting u're CNS & 2 what degree as they can check 4 elevated levels of autoantibodies or abnormalities in u're spinal fluid.

u may find this link helpful :0)

Emma73 profile image
Emma73 in reply to Sher78

Hi Sher78 can you explain CNS lupus symptoms. We are still banging our heads against a brick wall. My son is home now which is great but no explanations re seizures and ? what if they happen again. The Rheumatologist wanted a rpt MRI head as the last one was normal but in August pre seizures and the neurologist looked me in the eye and said "you want him to have a rpt MRI head, go and pay for it" He then walked away? He said he could tell me for sure that Josh does not have CNS Lupus. He had seizures tonic cholonic and flashing in his eyes which we think must be focal seizures. No LP has ever been done. He had MRI spine and that was ok. An eeg done 4 days post his seizures and only a 15 minute one and he was still on anti epileptic drugs when this was done but it was normal.

We were even told by one neurologist that Josh didnt have seizures and when I asked well what the hell were they then he smiled and did not answer.

I think they just think Josh is putting things on but why would they think that.

Josh is so down when in hospital. They treat him like he is a child and talk down to him, shout at him and bully him if he does not comply with getting up and eating breakfast when he feels as if he is going to vomit. But they don't give him anti emetics so why do they think he would put himself through that?

It is easier for them to brush everything under the carpet.

Sher78 profile image
Sher78 in reply to Emma73

The symptoms r slightly different in all of us & can depends on what other illnesses u have along with lupus (APS etc) but check this link ;0)

Emma73 profile image
Emma73 in reply to Sher78

Thank you it was a great help xx

Sher78 profile image
Sher78 in reply to Emma73

Hope things get sorted soon x

Thanks Sher. Multiple Sclerosis is one of the other things it could be, they have already ruled out Huntingtons Chorea and a brain tumour. Neuro is 99% sure its CNS Lupus going off clinical exam and blood results. Got a rheumie appt end of Jan to see about immunosuppressants/steroids

Sher78 profile image
Sher78 in reply to DaleDiva

My pleasure DaleDiva. Fingers crossed 4 a diagnosis, then at least they can start sorting out how 2 treat u :0)

Hi I had one to rule out MS as in the family, no LA but didn't find it uncomfortable, although was very worried at the time.

Did have to lie for a while but was in hospital already.

It's good they are not letting a student near you, I certainly would have been more anxious if this had been the case.

Good luck.

Hi No I Will not frighten you , My one piece of strong advice is do not lift your head off the pillow for at least a day no matter what anyone says I lifted my head and had the most severe headaches for weeks the most pain I experienced was from these headaches I do hope this helps and take care of yourself

Sher78 profile image
Sher78 in reply to Voutton

Agreed. After having a CSF leak headache, I will never again complain about a 'normal' headache!

Hi, after 7 lumbar punctures with bad headache after I finally was told to drink caffine which will reduce head pain, it does work so have a can of red bull or moster. I dont usually drink anything like this but it really was a gedsend

good luck


Thanx all for the advice, will let you know how it goes x

The caffiene works on the heads by slowing down any CSF leakage, thus causing it 2 'repair' itself ;0)

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