Lumbar puncture - the most painful experience of my life!

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! 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???

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.

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.

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

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.

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.

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.

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.

That is a bloody disgrace lauren , these are the new medic who will be working in our hospitals in the future and it is scary Facebook page ...I wonder if there are other pictures of patients on her page I am glad you complained.

I did try to delete my message it is a mess and full of errors' I did complain to PALS situated inside my local hospital but this only made matters worse, you wouldn't believe the lies consultant a Dr and a male nurse told..one lie was I was I backed a consultant into a corner everything I said happend didn't . It was them against me ' I don't need to tell you who was believed...I was made out to be a liar who imagined everything ' other events took place which I didn't add, as soon as I find how to correct errors I will

Thanks for replying

I am the original poster of this discussion and I am shocked to see that other people have had to suffer very similar situations to that which I suffered back in 2007.

Even though it was 7 years ago I can still remember every detail of that period of time and I am certain that I have continuing problems due the procedure.

I eventually had apology letters from the hospital and the Doctor that performed the procedure left the NHS shortly afterwards (funny that!). I didn't know if I should have taken it further but other things in life got in the way, such as being made redundant after maternity leave, moving house. It was all a bit hectic and I couldn't deal with the additional stress.

However, I now have periods of time where I have pain in my back which I am sure could be caused by the lumbar puncture but cannot prove it. To exacerbate it, I had a car accident a few years ago and now suffer pain in a different area in my back/side (they are distinctly separate areas of pain and type of pain) for which I have finally been referred for pain management.

Ho hum.........I'll put it down to getting old and move on!

Perhaps, one day, they will change the procedures so that we follow those in Australia/USA on how patients are dealt with during and after a LP. :-)

X

Hi Bez. Thanks for bringing this subject to light. If it's any help, the thing that has shifted my giddiness, feeling of falling, spiking head pain and general headache recently has been my father sending me to an osteopath. He has a dire bedside manner but really knows his stuff. He also did kinesiology style muscle testing to see where my neurological weaknesses were. After weeks of medics talking bilge I have finally found someone who makes sense. He said that for some people the very act of a needle going through their dura mater can throw anything associated with it out.

Hope you find something that helps.

Hi bezb wow I jus read this ans ive jus gone thru the same im so ill ay min ive jus come back from a and e where they said they cant help me. I dnt trust my neurologist anymore. Can I ask did they ever mention a blood patch and hope youe doing bwtter now. X

Hi BezB

I'm not in the UK. I'm in the USA, mine spinal tap was done with a local anesthetic and under fleuroscopy (x-ray guided) so they wouldn't miss the first time.

It sounds like they really treated you rough. I sometimes get the feeling that doctors think we are full of shyte and treat us poorly for it. I was told I was a hypochondriac and a med seeker before my MS diagnosis.

I do think that you should complain to the hospital and the medical board. A spinal tap should take no longer than 45 min and then you go home and lay flat on your back for 24 hours. You had to spend 5 days in a hospital afterwards, that is ridiculous and the Dr should get a black mark on his record. If you know the dr's name give him poor internet reviews on every available site. Those things are looked at by prospective patients.

About your symptoms: based on your MRI findings the loss of feeling s most likely due to the discs in your c-spine.

Again, I'm sorry you had such a had such a horrible doctor.

I just got home from the hosiptal.  Have the worst headache of my life. Started in my eyeball and spread to the entire f