Lumbar Puncture? Is it painful ? How long does it take? Little scared ... will I meet the Neurologist first before the procedure? -x-

My Rheumatologist is baffled over my symptoms and my blood test contradict my MRI;s and physical disorders... My symptoms have come within a year rather than over the course of years ... Rheuma is concerned and has asked me to go to the Lupus Clinic in London as they have run out of ideas to stop it progressing as rapidly as it is. He cannot understand why I have normal bloods? Yet clearly see from the MRI tests something going on with my spine and brain .. Last resort is the Lumbar puncture to test the spinal fluid .... Ive been diagnosed with Fibromyalgia, Arthritis, Bakers Cysts, Sjogren's, and damage to my spinal nerves ... I have signs of Myasthenia gravis and diagnosed with Discoid Lupus and symptoms of SLE... They are all puzzled, just a waiting game ... But I want to know the truth about what Im about to experience with the Lumbar Puncture please -x-

15 Replies

  • I had a lumbar puncture 15 yrs ago so don't know if procedure is different nowadays. I had to lay on my side and curl up tight. A needle was put in my back to take fluid. They not only test the fluid, they are also interested in the speed that it comes out. I was an in- patient at the time and the procedure was done on my bed. This was because I wasn't allowed to get out of it for 12 hours after. I had to lay flat on my back for the duration. You are obviously concerned about discomfort and I can honestly say that the fear of having it was much worse than the real thing. I was so tense that I didn't realise the needle had been put in. They told me that it is common to have a headache after but again I only had a mild one. Like you this was all part of diagnosing me as at the time we were clueless. It did not diagnose lupus. It was to rule out other things. I know if I had to have another lumbar puncture, I wouldn't be as scared. !. Good luck, you must be very worried at this time. Hope they sort you out soon.

  • Sorry meant to say it didn't take long. Prob about 10 mins. More time spent preparing for it. Don't think my neurologist did it. He came on ward round during the day and ordered test along with other investigations. Was quite lucky as it wasn't done til 8 pm, so staying in bed was easy as it was almost bedtime anyway. I remember my sample was taken to London via a London black taxi. My test was in Romford, as I said, 12 years is a long time in medicine. Hopefully someone with more recent experience will reply.

  • Thank you 6161 for replying ... it helps reading others testimonies .. it has given me an insight into whats going to happen -x-

  • Hi. I had a lumbar puncture last October to test for meningitis. It is highly uncomfortable and is quite painful but it is all over in about fifteen minutes leaving you with discomfort which lasts about 48 hours. It's not nice but isn't the most painful thing going. Hope this helps.

  • Hi, I had one in 2012to test whether my meningitis was viral or bacterial. They use a local anaesthetic to numb your back and then you feel deep pressure which I found uncomfortable but not painful. Mine was also done in my bed, and I found having to lie flat for 7 hours afterwards the worse bit to be honest! A tip to prevent the headache is to drink black coffee or coke (but not so much you need the toilet!) Good luck, I would not worry I found mris more uncomfortable.

  • Well I had one in July.The actual procedure wan't as bad as I had imagined it to be.I refused one at first because I was so scared.My neurologist insisted I had one pretty much so I couldn't refuse again!

    It took a while for them to prepare you and I really didn't feel the injection and even see anything which was good.The Doc who did it had a sense of humour which helped.It wasn't the horrifying experience I had had nightmares about,However...When it was happening I felt a mild tingling down one side and had to lie flat for an hour after.Then When I was released I had to rest.I did for 12 hours like told.I went to work the next day felt ok for a few hours then it hit me.the headache from hell!

    I was warned by the doc but I never bargained for it to be so painful.

    I read that I had to lie flat and it helped to have your head completely flat.Drink Coffee and coke!t helped but not a lot if I am very honest.

    I felt ill for about a month after it.I could not stand up for a week at least without my head feeling it was going to explode.

    It was the after effects that affected me >The procedure was fine and the fluid came out very quickly so I was lucky in that can take a while apparently.

    I have seen my neurologist and he said they did find something which I am pleased it was worth the headache!

    It could be the missing piece of information in the jigsaw puzzle so it is worth the suffering I am sorry to say.

    I had had a stroke due to a clot of some sort on my brain.

    I do wish you all the very best and hope all goes well for you. Elle.

  • Thank you kb281 .... I can plan my life if I know it may affect me like this ... Its the planning ... :/ Glad they found something, its a sigh of relief, and yes its a nightmare if they dont ... Just hoping they find out whats happening, nothing is helping the pain im in ... it;ll be nice to see a smile on my Rheumatologists face as hes one of the Top Consultants and a lovely man .. He deals with many Lupus cases but Im a mystery :/ -x-

  • I had a lumbar puncture earlier this year and the prep by the specialist nurse who did mine was amazing, the procedure took a few minutes but the lying down was tricky being hyper active as I am!! The result was normal when it can back for brain and nerve damage but for heavens sake if the nurse says go home and stay laid down for 48/72 hours DO IT!! I went to see my own gp for results of breathing tests and i developed a complication of a slight dura leak from the spinal column. This had to be treated with strong medications (naproxin) and I was off work for the best part of 6 weeks!! Do follow instructions I.e. stay flat as much as possible and you will be fine! A few minutes of mental discomfort is worth it for reassurance the tests give you! Good luck and get back in touch to let me know how you get on, if you want a chat further please do not hesitate to get back in touch!

  • Thank you CWG2210, I will let you know how it all goes ... Ive been told I will have to lay down for 48 hours but it seems everyone suffers badly for weeks and months after ... I live in Cornwall and have children so I chose to have the Lumbar Puncture rather than go into hospital in London ... either way I think I'll end up having to go :( Ive deteriorated badly and do not recognise my self ... scary when even the Rheuma cant understand it either ... I just dont want to get worse -x-

  • i had two lumbar punctures done earlier this year the first one went ok but he didnt manage to reed the presure no problem after the staf nurse told me to ly down for a few hours a few days later second lumber puncture differant docter took a few minutes docter said best thing to do is drink caffine so of to caffe and no after affects that time iether good luck

  • Thank you famerfester ... Hoping I dont suffer like others have -x-

  • Morning, I had a lumber puncture many yrs ago and it wasn't a pleasant experience due to my nievity,

    my best advice, make sure you have someone who is qualified and has performed numerous procedures

    curl up into a tight ball, and keep as still as possible

    lie down for at least 6 hours afterwards

    lots of people say to drink cola or coffee afterwards to help with the headache - I wish i'd known this.

    have someone talk to you throughout to keep you relaxed

    follow these tips and you will be fine x

  • Thank you so much tiredmum -x-

  • You should make an appointment to see the neurologist and also the radiologist who will perform the procedure and bring your list of questions. When I had a kidney biopsy, I insisted on meeting with the radiologist a week before. I asked him all my hard questions, including if anyone on whom he performed a biopsy died as a result. After all, it was my body and my kidney that would be going through the procedure. When a close friend had a neck biopsy, we did the same thing.

    Try to remember that you are a partner in your care, not a hapless victim of it.

    The Mayo Clinic has some excellent information on the procedure, what happens, why it is done, and the risks. Here is a link

    Once you read, you will be better prepared to ask pertinent questions.

  • It doesn't hurt except for when they inject the novacaine. You have get in the foetal position and stay still until its over, it takes about 20 minutes I think (had mine many years ago).

    It is a bit uncomfortable and keeping still is a pain, but it shouldn't hurt. You do have to keep still as moving can cause serious problems with your spine.

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