Lumbar puncture - the most painful experience of my life!

Tests and investigations
1

Hi everyone

I am new on here and thought it would be useful for me to gain advice from the experts!

I have been undergoing tests for MS for the last two years following a loss of feeling in my right hand side (my thigh and my right arm mainly) which then went on to be tingling and numbness or tiny electrical pulses which would move up and down my arm. I have had 3 MRI's now and all these have shown are wear and tear on my spine/discs, worse around my neck. I also had a CT scan which was clear and electro-sensitivity tests done at the Oxford Radcliffe which were also clear.

Finally, I was told I would need a lumbar puncture to see if this would give any consise diagnosis. I went in on a Wednesday and was told by the Dr performing the procedure that he had just done one without a local anesthetic and the patient only felt mild discomfort and so he would do the same with me. His comment was 'why have two needles when you can have one'. I did tell him that I had a painful epidural with my last baby but he said that a lumbar puncture was a lot less painful. So I prepared myself for just 'mild discomfort' taking his word for it. The next half an hour (and since then) has been like a nightmare.

As soon as the needle went into my back I felt such unbelievable pain that I was screaming in agony. He continued to dig around trying to get the CSF to come out and this went on for about 10 minutes with no result. The pressure was 1 when this was happening. My husband was holding my hand and he could see the look of terror on my face as it was happening. On a pain scale of 1-10 this was a 100!!! The Dr kept repeating that this had never happened before and he would have to try again, at this point my huband told him that he had to give me a local and I was sobbing. I had two nurses holding me down and telling me not to swear as I was in an open ward.

I was given a local anesthetic and then another lumbar puncture and once again he couldn't get any fluid and the pressure was 1. This was less painful at the point of entry but I had referred pain pretty much everywhere over my body (especially my groin, neck, shoulders and legs) and my right leg was going into spasms when he was digging around touching the nerves. Finally he managed to get the fluid which was coming out very slowly to start with but then started to speed up (thankfully) and the pressure increased to 24. The whole process took just over 30 minutes.

When it was done I was told that I might suffer a mild/moderate headache as the pressure had been low and to lie down for 1.5 hrs which I did. My husband then took me home - I was wobbly but could stand. A few hours later I was lying down on my bed and needed to use the bathroom. As soon as I raised my head an inch it felt like my brain was being forced through my neck and down my body. I actually thought my neck had been removed!! The pressure was unbelievable so I had to stay put. Five days later and no sign of it getting any better and two visits by a GP I was taking into hospital by ambulance. I was in for a week whilst they did various tests and during this time I was given a kidney infection from the catheta and had a reaction to the anti-biotics. I couldn't lie down, sit up or anything - I was hanging over the bed crying and begging the nurse to help me.

Eventually the pressure in my head started to go and I was allowed home. However, now I am back I am suffering from lower back pain, worse pain in my right arm, pain in both of my legs and I have superficial vein thrombosis in my right arm (which is getting worse) from the cannula that was in for 5 days (and only flushed twice).

I am due to go back to work next week after being on maternity leave and have missed the last 3 weeks of being with my son before he started nursery because I've been through all of the above.

I am thinking of complaining to the hospital and wondered if anybody had any useful information that I should be thinking about whilst I pen my letter of complain? In particular, is it normal procedure to carry out a lumbar puncture without a local anesthetic?

Any advice would be very, very much welcome.

2

Hi BezB,

I like you am being tested for ms with nothing conclusive being found. I have had MRI, CT and lumbar puncture done under a local. I have never heard of it being done without at least a local as every patient has different pain thresh holds. Im 35 and have being trying to get an official diagnosis for 2 years now. Since my lumbar puncture I loose the feeling in my legs at times, so be prepared for this to happen to you. I do not think what happened to you was an ethical move on the doctors part as he should have been thinking of your comfort. It is hard if your children are young as my youngest daughter was 11 months at the time I started having problems. Hang in there and dont give up, you will feel they are telling you its in your head but as my GP said to me you make yourself feel happy or depressed but you can not make yourself believe you have pain and feelings if they are not there. My GP has taken over my care as they where not satisfied with consultants results. I hope I have helped you.

3

if it is any consolation, I had a lumbar puncture before a magnum foramen decompression in 1983 and it doesn't sound as thought anything much has changed. The actual pain of the procedure to the totally crippling pain in my head, feeling as though I'd been kicked in the back by a horse wearing slippers, I can still recall it all these years later. It was honestly worse than the op. It took me about 5 days in bed before I could lift my head. Not wanting to worry you all further, I have in the last few years been suffering intermittent neck/head pain which may or may not be the result of the mylodil (in those days it was called a myleogram) .The specialist refuses to accept I ever had the treatment!! Good luck to you all, hope you all find it is worth it.

Winchmore smile

4

i had a lumbar puncture just over 4 weeks ago testing for meningits/bleed on the brain. i have never been more terrified in my life as i was wheeled along for it.. but luckily for me i experienced a lot less pain than i expected to. seems i was lucky that no nerves were hit etc. however.. i was told local anaesthetic was always used. n when i asked to move they said i couldnt as the anaesthetic would dissapate and would then need more. so seemed pretty crucial!

afterwards i lay down but generally felt ok drinking caffeine to prevent headache as i was told... slight achey pins and needles in my hips and legs but not too bad. went home 45 min car journey ok but got a little uncomfy where id had it. but the next day.. n 4 days later i could not even sit up in bed. if i was up for more than 2 mins..the pressure in my temples.. then behind my eyes all through my skull n into my jaw was excruciating. pressure immediately relieved when i lay down but felt like i was going to pass out before then! all quite unsettling considering i was supposed to be better now. then the dr finally told me that this problem not being able to sit up was due to having such low blood pressure. n i had to keep drinking caffeine which the hospital failed to tell me! not great addition to the ordeal already. your hospital care does not seem adequate or caring.

5

Hi there, i am 20 years old and i had a lumber puncher on friday. I went in at 8.10am and waited until the afternoon when eventually my notes turned up from one hospital (2 mins away). At 1.00pm the doctor came and said that i needed some blood tests doing before i had the lumber puncher, wich i had done there and then. I got the results at about 2pm and then the doctor came back and said we are going to get on with the lumber puncher. I got ready and then i sat on the edge of the bed holding hands with my mum (tight), she got all the equipment ready. She put the anasthetic in wich took about 2 to 3 mins, i didnt mind that at all. Then it came to the big needle!!!! I didnt feel the needle go into my back but i did feel the needle touch my left leg nerve! OUCH, that made me cry. That needle went in first time and then my mum, 1 nurse and the doctor laid me down on the bed so that they could take the pressure. The doctor took the pressure and it came out at 32.5 wich it is supposed to be between 10 and 20! No wonder i couldnt see properly, and my head was going to explode. So the doctor took 6 pee tubes of fluid off my back and tested the pressure again, it had gone down to 12 wich is good. She took the needle out and i didnt really feel that either, put a plaster over the needle sight and laid me on my back for 2 hours. As i was in the day case unit and it was 2.30pm by the time she had finished doing the lp, and they nurse and receptionist went home at 3.00pm i had to be moved onto the ward into a proper bed. I was moved on a comode wich was embarasing! I laid down on the bed for a good 2 hours and drank nearly 2 to 3 litres of water, wich wasnt easy lol. Then all of a sudden i got shooting pains down both my legs and it really hurt, i asked the nurse to get me a doctor and she went straight away. He said just to have some co-codomol and he would review me in 2 hours time, this is at 6pm. 2 hours later another doctor came (thats 5 so far) and gave me a thorogh going over to check me, and gave me the choice, i could either stay in hospital over the weekend or go home, i chose to go home so that i didnt get an infection (you know what hospitals are like lol.) What a bad desision that was, the next morning i couldnt move, i couldnt lay down, sit down or nothing. So i rang nhs direct and the ward i stayed on and they both said to go back to A & E. I went to hospital and they checked me over, the consultant rang the nuerologist and they said i just needed to rest. Im going back tomorrow (monday) for a check up as my left leg is still playing up and i cant put my chin to my chest and also cant stand up straight. Im in soo much pain in my leg and lower back but not from the lumber puncher sight. I would say that the lumber puncher itsself was not that bad apart from hitting my nerve.

Im needle phobic aswell so when one nurse said to me oh you wont be having the lumber puncher today i turned round and said i think i will, i have siked myself up for today over a week and i will not come back if its not done today.

This all started with a eye sight test at my local optition, i was in for 1 hour 20 mins and she said oh i need you to go straight to your doctor and hand this letter in to be reffered urgently to the hospital! Luckely i had an appointment the same day. I was reffered and seen within 1 week at the eye clinic. They sent me for an MRI scan and i got that within 1 week and then was back at the eye clinic for the results. Shesaid that there was no growth behind the eye and that i needed a lumber puncher to relieve the pressure. I then had to wait 9 weeks to get the lp done! It ended up that i had to complain before i got anywhere.

So thats my story and i hope you enjoyed reading it.!!

6

i had a lumber puncher yesterday because of headaches over 3 months and dizzyness, i also had a ct scan, all came back fine but now my back is acheing worse than my head, is this normal does anyone know?

7

Hello, I am 16 and have been having an unknown problem with my health so they decided to try a lumbar puncture to see if anything came up. While my lumbar puncture wasn't as bad as yours, I also had a horrible time. The doctor kept trying to get the fluid but for some reason he wasnt able to. He kept stabbing my back and it hurt like no other! It was truely a nightmare. At one point then he thought he had it but when he put the tube on to get the fluid, then to his dismay, nothing came out. During that whole time then I was crying because of the horrible pain. After wards my lower back was in deep pain. That was about 2 months ago and I am still having problems with my lower back. They think he might have tore some muscle. And my health problems are still a mystery.

Thanks for reading my story, I am glad I am not alone in my pain

8

I might be little late in replying to this, but if anyone's reading, I have to say I'm amazed! Here in Australia, the docs don't let you MOVE let alone get up for 24 hours after a lumber puncture, which might be the cause of a lot of the headaches?

I've had five lumbar punctures for recurring meningitis, and my problem from them (or one of them at least, I think) is that I have chronic constipation and can't really feel much in the pelvis area and tops of my legs, and also my lower back.

Anyone else had similar?

9

I'm 15 and I had a Lumbar Puncture because they think I have MS. As you see it's now December and I'm still having spinal migranes. I've had two blood patches, and yet it's still leaking. I've never experienced this pain before in my life. The doctors say nothing is wrong, but obviously there is if 2 months after the surgery I'm having spinal migranes.

Well, That's my experience.

10

Hi

I have hydrocephalus - I have had two shunts fitted but unfortunately I have been suffering for years with terrible dizziness - so much so that I have had to give up work.

The drs. do not seem to be able to find out what the reason for this terrible dizziness is and I have had various tests to find out whether there is a problem with the shunt - and so far no one seems to be able to find anything - which leaves me in a dilemma.

Last week I travelled to J. Radcliffe hospital in Oxford for a lumbar infusion - and like the original person on this forum I suffered excruciating pain - even though I had had local anaesthetic. The needle touched a nerve (or nerves) and I too was crying with pain and was squeezing my partners hand so tightly. I had to lay in the fetal position for about an hour.

Then after the drs had probed around I was told I could stretch out - well my legs went into spasms and then I had cope with the pain in my buttocks - again all this made me cry.

I was informed that the pain would go after a couple of hours - but it didn't and I could barely stand up - we were supposed to be travelling back to Leamington Spa - but we don't have any transport and I knew that I couldn't manage to stand up let alone travel on public transport - so in the end they admitted me overnight. My partner was given a bed roll to lay down on and in the morning we were sent on our way.

I am due to have a cranal infusion this Thursday at the same hospital and I am absolutely dreading it.

Reading the first message - made me want to post this message and I just want to say that I empathise with her.

At the end of the day the drs should show a bit more compassion and understanding. I do not want to be unwell; I am sick of being in pain; no one prepared me for how horrible this proceedure was going to be and I dread to think what the cranal infusion will be like.

11

Gosh thankgod there are other ppl out there with similar problems, I too had a lumbar puncture to check for meningitis but like yourselves did not go smoothly. First of all the doctor DID NOT give me a local anaesthetic he just went straight in there poking about with the needle and had trouble getting any fluid out so he attempted it up 7 times which i can assure you was very painful, my legs felt like electric shocks were passing through them!! Eventually he took 6 tubes of fluid and the conclusion was normal. I was then told i would be taken to a ward to lie down flat because i would get a headache and that i should lie there for at least 2 and a half hours, once i had done that they told me i would be taken somewhere else to check that no leakages had occured but no one ever did show up to do that, instead they told me i could go home.

So doing as i was told i was taken home by a family member and on the journey i had to lie flat on the backseat of the car because this enormous pressure filled my head but cleared once i was flat, anyway i thought that would happen at least a few days after and get better but did it heck!! It got worse and a week later i was screaming in pain and i had an ambulance take me back into hospital and once there they had to give me morphine because i could not stand, sit up up or even lie flat without my head feeling like it was going to explode, i was even sick a numerous times due to this pain.

Eventually i had to stay in hosp for 3 weeks, had 12 tabs a day, had a CT scan and i also lost 2 and a half stone! After this i was still bedbound for 3 more weeks due to the same pain but at home with all my medication. The CT scan came back normal but I swear to this day ( which is now 4 years on!) that there is still something wrong......why do i think this?? Because ever since i have bad headaches, a bad back and pain in the area from where it was done, i cannot bend down and say look under a settee as my head fills with pressure, i cannot lie on my front and watch tv as again i get pressure in my head and my hearing slowly fades, i previously drove to wales and whilst driving up a very high mountain my head yet again filled with pressure and mild pain and if im lying in bed and rest my head on the headboard i get pressure and an uncomfortable feeling where my crown meets the back of my head and i have to sit up as though i need to take the weight off it.

I have a holiday abroad booked in september and since this lumbar puncture i have not flown and too be honest it scares the hell out of me incase i have extreme pain from the pressure in my head from the height of flying.

I wish someone could tell me if something is still wrong but doctors just dont seem to wana listen sad hope i get sum news soon!

12

I am so sorry you had such a bad time! I really thought that in 30yrs things would have improved. I can still feel the pain from that needle and the incapacity afterwards. How can it still be as awful! You poor thing.

13

I'm not surprised that some doctors don't take lumbar puncture pain seriously in adults.

They do this to babies, against all medical guidelines, all the time, and it's just the tip of the iceberg! sad Without public awareness, parents aren't going to know they might have to insist upon or demand such a basic standard of care and human right as anesthesia for their baby if they're to get it get it. And now it seems that some adults, too, have to demand it for themselves. Something's got to be done. UK tax payers (although it's definitely not just affecting the UK) are paying to be tortured, and not just in this procedure. What else would you call completely unnecessary agony inflicted by invading sharp objects?

It's a hang-over from when medical opinion held that young babies felt little or no pain due to immature nervous system, and from when even local anesthesia was considered too dangerous and an unnecessary risk in babies under six months. It's now known they experience even more pain than adults do and that it alters brain development, but for various reasons - including not knowing them - many doctors still don't follow the up-to-date medical guidelines to take pain management just as seriously in neonates as they would in adults. The lumbar puncture is just one of many excruciatingly painful procedures that is still routinely performed on babies in hospitals without any kind of pain relief or with much less effective pain relief than given to adults. The figures in the link below are from the USA, regarding lumbar punctures, but the general problem exists at similar rates here as well, with us giving anesthesia less often than Americans do for some very painful procedures, and more often for others.

www.acep.org/content.aspx?id=83269

Footage of male circumcision, the most common surgery performed in the US, involving 5minute+ of unearthly shrieking and sometimes withdrawal into shock/dissociation/passing out that uninformed doctors still mistake for calming down or falling asleep, haunts me.

At least THAT one's not as common here, but I want to refuse to pay taxes towards an NHS that does not strike people off for doing that and any other extremely painful thing to non-consenting minors without anesthetic. Classing this negligence as gross malpractice, whether to an adult you haven't fully informed or asked, or to a minor who can't consent, would put an end to the madness; these guidelines have solid evidence, common sense and human decency to back them up, so are they not worth ENFORCING? NHS, NICE, the government, the Court of Human Rights, anyone???

14

Does anyone have experience of a special MRI scan where you are injected first with something that will show up CSF leakage?

Worthers24 I do hope your symptoms are better after this time.

15

Neia, I go this Tuesday for that MRI I've just recently found out that I'm leaking spinal fluid. I'm nervous about the procedure since I'm already leaking fluid having another hole in my derma doesn't seem like a good idea but it's necessary to find the current leak and get it fixed ASAP. I've been dealing with this for a month now and I can't live like this much longer.

16

Hi Lauren

I had my MRI last Friday and they only looked at my brain, presumably to check the amounts of spinal fluid in there. There was nothing invasive i.e. no injections or needles. Some people find it very disconcerting since the cover for the machine is so close to your face if they're scanning your head. I just shut my eyes and pretended I was somewhere else.

I know what you mean about not wanting to live like this any longer. I was on the verge of going to a different hospital's A&E yesterday and hoping to be taken seriously there!

Hope it all goes well

17

I went to three before getting an answers. The first one told me I was dehydrated and sent me home with a script for anti nausea medication. The second one said it's an infection in the spinal cord gave me antibiotics and on my way. The third finally gave me a real answer. I've been going to Dent neurological. And they are wonderful. On the day of my first appointment I had two regular MRI'S. I had the MRI where they inject the dye into your arm last week and now I'm getting ready for the lumbar puncture.

If you are not happy with what the doctors at the hospital are telling you find a neurological disorders clinic mine is about an hour away but it's well worth the pain of the drive to see someone who knows what they're doing.

The first and second hospitals looked at me like I was in there talking up space when I was passing a blood clot threw my brain causing the tear. If they had really looked at it I would probably have been fixed by now. But instead I'm dealing with all kinds of crazy side affects from my brain being knocked around. I've spent a few weeks being cross eyed, had a slur in my speech, issues with motor skills, and the pain oh my god the pain of a headache that's lasted over a month.

18

Oh, Lauren it sounds like you've really been through the mill. I got the wrong end of the stick and thought you'd already had a lumbar puncture and that was the cause of your head pain. That's what I've been having. Before you have it done I do recommend asking what type of needle they are using and what trajectory. It sounds a bit overblown and I know what it's like to feel cowed by medics but after all the horrendous pain I've had from a pointless lumbar puncture I've learnt a lot. Some research said that if the needle goes through the fibres of the spinal cord and cuts across them the hole will be less likely to mend than if the needle goes alongside and through, if you see what I mean (a bit like the difference between going through horizontally an nearly-vertically). I had a student do mine and, while they've got to learn, I just wish it hadn't been on me! There was some evidence that needles with the hole not actually at the tip had better recovery rates too. You may, of course, be perfectly fine anyway since it's an absolutely tiny percentage of people who ever get problems, something like 2.6% in one study I read.

I hope you get to the bottom of everything very soon.

19

I first began to notice back & arm problems in 1984, I carried on working until 1999 [ I had a young family at the time so going on the sick wasn't a option] gradually my symptoms became more severe over time'

both arms, legs feel weakness ' heaviness sometimes my arm sometimes a arm or foot makes involuntary movements, when it is my foot is the worst I have fallen on more than a few times now [ the worst part is I don't seem to have the ability to stop myself falling any more ] I do have back problems plus Arthritis which effects neck & most joints .

I am limited by how far I can walk or how long I can stand, last year I would have the odd good day which meant I was able to go out for a few hours [ it usually meant I wouldn't feel well the next day ] now I cannot walk to the corner of my street [I have had to use a mobility scooter for the last few years indoors I have to use my wheelchair, I have to limit myself when walking around my home , I seem to constantly bothered by pins/needles in the backs of both legs' if I am active [ indoors ] they become more severe plus my calves feel weak and ache. More recently I have began experiencing pins/ needles in my back ...only if I am on my feet for to long,if I have a hospital appointment it usually means I will feel ill for 1-2 days afterwards' I began taking my wheelchair when visiting hospital but I find that it not only causes arm pain...it also causes calf muscle pain [ not something I expected ]

I was supposed to have a L P about 4 years ago ' but I'm not to sure if it actually took place , I had previously been a in-patient for a few days I had been admitted to allow a few tests to be done to try to find why I was having all these problems, on the first day I was diagnosed with M G seeing as I was the first person with the condition I was asked if I would be willing to stay in to allow the condition to be studied, I was just thankful some of my problems had a name ' so I agreed everything was going fine until one morning ..while I was sitting on my bed I heard someone in the corridor just out side my ward mentioned my name ' then I began to hear someone listing my current diagnosis and private stuff I didn't really want other patients to hear.

I walk into the corridor and saw a male nurse and a young person [ who I knew was from the teaching college connected to the hospital [he looked about 16-19 years old ] I said I thought my details were supposed to be kept private it should of occurred to them that everyone on my ward could hear' just as I was finishing the ward sister walked through the double doors I returned to my bed [ which was at the back of the ward] the sister came to me a short while later apologizing for the male nurse I was fine I didn't plan on making a big deal out of it. Two hours later a young female hospital Dr came to my bed asking if I would rather go home for the weekend' she added no more tests or X rays were planned until the following week, so I agreed,as I was packed & dressed asked by the ward sister why I was dressed..she said I was booked to have X rays and tests that day' she said the Dr was mistaken I was definitely booked in at the Xray department in fact the sister telephoned the X ray dept while I stood near enough to hear' the sister was right I was still booked in. the Dr arrived again saying the tests were cancelled in the end I was fed up and went home

I waited until Tuesday before I rang the hospital when I asked why no-one had been in touch I was told the tests were cancelled because I had discharged myself' I was also told a student had claimed I had told him I was planning to refuse further tests ! I told her this was a lie I did neither' I was told she would speak to the consultant and ring me back. I was given a appointment for the following week, I asked my wife to come as a witness

I was shocked when the consultant said the tests were cancelled because I had discharged myself after telling a student I was planning to refuse any more tests ...I said all this was a lie I did not say anything to a student nor had I discharged myself I couldn't believe my ears a Consultant sat in front of me telling LIES ...I know if I was being told these things about my wife I would still stay on my wife's side but I would probably have niggling doubts now & again. The Consultant said she would be willing to allow a L P but only if I returned to the same hospital, if I did not want to return to the same hospital I wouldn't be allowed to have a L P anywhere else , which meant I had no choice but agree.

On the day my wife came along again as a witness.....although she was told she couldn't watch the procedure unless she was a Paramedic..she is not so the drew the curtain around one side of the bed in front of her [ it was strange I noticed the ward was deserted ] I had witnessed a patient having a L P when I had been in hospital, I could tell how painful it must be by the patients voice, I was surprised to see evidence of blood and antiseptic on the bedding and his clothes I was willing to go ahead I was asked to lie on my side I felt a little pin prick a few minutes later he told me he was done ' I was told to lie on my front [ something I seem unable to do for long ] after about 15 I asked my wife to find someone and ask how long I would need to lie like this..she returned saying we could leave any time [ I heard it was a couple of hours] I stood up expecting to see evidence on the bedding & clothes.......nothing except for a very small round plaster the only pain I had was the pain I have on a daily basis. I expected to feel difference later that day or a headache but nothing.I have serious doubts about if I did or did not have a L P I know how stupid I must seem , the story is a little hard to believe .........but it is true

I have been back to my Gp mainly because I have fallen more often than my usually do. The pain is unbearable at times..some days my meds don't seem to relieve any thing' other days they do, as time passes other problems appear , but the last time I saw a specialist I was told he had the same opinion as another specialist hadf thought, I ask why I need my wheelchair more than before, but all I am told is they may never find a answer for me a while ago I was told [ by someone fairly high in his profession] why no-one SEEMS to have a answer' and why no-one will say what is problem actually is

At this moment I have just had the electrode test [ not sure what the correct name is] and I am waiting for the results.

mad

20

Thom I can relate to the over exposed feeling from the hospital. I had my LP on Tuesday the test that went with it was apparently one that isn't done a lot so the doctor invited his students to watch so I had 6 giggling bimbos in the room while I'm flat out on my stomach totally exposed. It took the doctor three tries to get the needle in and I can honestly say the LP part was the least painful part of the whole day. Afterwards when I got home it felt like there was a golf ball under the skin on my back. I did have a bad headache but the testing I had done took five hours and was a lot of rolling moving and upside down.

You have the right to want your information kept private. During my scan one of the bimbets took out her phone and began to take pictures of the scan saying how she was going to use them for her Facebook profile picture, when I got home I called the hospitals HR department and complained about her they insured me they would have the pictures deleted from her phone and she would be retrained on HIPA laws. Honestly if anyone in that room had come to me and said hey this is a great opportunity for us to teach these students how to do this procedure I would have been ok with it and grateful for the chance to help.