Lumbar puncture - the most painful experience of my life!

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.

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

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.

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.!!

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?

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

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?

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.

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.

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 hope i get sum news soon!

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.