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Lumbar puncture - the most painful experience of my life!

Posted , 32 users are following.

BezB
BezB

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 likes, 52 replies

52 Replies

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  • leea78820
    leea78820 BezB

    Posted

    I hope you are fully recovered. I had a lumbar puncture last week and the ER physicain failed three times until I screamed and demanded he stop! Finally they did the procedure under anesthesia and with floroscophy. Once home, just like you, I got worse and worse. It has been a week and my back is throbbing in pain and I my head aches like never before (and I've had a brain tumor, so that means it's pretty damn awful!!!). I will NOT go back to the hosital ER I went to a week ago but if there's not improvement must go somewhere. Thanks for letting me know I am not alone. Your post meant a lot to me.
    • daniel12488
      daniel12488 leea78820

      Posted

      I am much better now. I have a photo of my back a friend took. It shows 7 points where he tried to get spinal fluid. My back is still very sore and stiff. But it doesnt seem to be any permanent damage.  My headache came and went all week.  Sometimes barely noticeable. Sometimes almost as painful as when in the er. I hope you will recover as well. I believe these 2 young doctors i had were eager to shall i say experiment on me. Ever after i t old them i was not normal in my lumbar region. I saw a neurologist 10-23-14 and he said there was absolutely no reason to do that test.  And if i had a brain infection i would already be dead.  Wow. His words. As i said. I really hope u recover well.  
    • jess_s
      jess_s daniel12488

      Posted

      I know this advice is too late but for anyone else or if needed in the future.  If you need a spinal tap (lumbar puncture). It should be done under fluoroscopy which means xray guidance.  This eliminates 90% of the chance for error.  Also, after a spinal tap you cannot drive home!  You must lay flat for 24 hours, only getting up to use the bathroom.  The spinal fluid is a cushion layer between your brain and your skull.  It needs 24 hours to replenish.  If you don't follow these instructions you will get a migraine that lasts for 2 yes or more.  I hope you feel better.
    • brittany_72833
      brittany_72833 leea78820

      Posted

      How long did you pain last I have a brain tumor and my head hurts feels like my brain is being sacked dry and punched :*( they did it under xray and still missed and had to do it a second time no pain relief so I was moving and puking and passed out from the pain
  • catrin62302
    catrin62302 BezB

    Posted

    Hi.  I am thirteen years old now and have been unlucky enough to have have a lumbar puncture twice due to having meimgitis and a varient of guillean-barrie.  All I can remember of the infection is being held down by many injections whilst being extremely alarmed by the act that my mum had to go out  of the room.  I also remeber the needle being pretty larege and being forced to stay in a ball so that they could insert the needle between to bones.v.scary sorry to alarm anyone having the injection.
    • jess_s
      jess_s catrin62302

      Posted

      Hi catrin, That sounds like a horrible experience for someone so young. It sounds like they used the same technique used to give an epidural during labor. I've had 2 children and they told me to stay still and hunch over a pillow to open up the vertebral bodies and then they put in the epidural. I've only had one spinal tap, I was laying flat on a table and they kept taking x-rays to make sure the needle was alligned correctly. They numbed the area but that is only skin deep. They went for the sac at the bottom of the lumbar section. They put in the needle, it felt like mild labor cramps or very heavy menstral cramping. Then the bed was inclined to at least 45 degrees to allow the fluid to drip into the vials. They showed me what it looked like. Mine looked like water which is good. I was diagnosed with Multiple Sclerosis 3 weeks later.
  • katie75279
    katie75279 BezB

    Posted

    I am having my first lumbar puncture next week from having to much fluid in there and I am now terrified after reading everyone's story here sad
    • jess_s
      jess_s katie75279

      Posted

      Who is going to do the spinal tap?  If it is under fluoroscopy then it should go well.  If you're not being sent to a radiologist to have it done request it.  Let your doctor know you will only have it done "under fleuroscopy" which is with xray to avoid mistakes.  I don't know how old you are.  If you have ever had babies, it is less painful than a contraction.  It feels more like a very strong menstral cramp that begins in the back and wraps around a little.  Focus on your breathing and remember it won't last forever.
    • katie75279
      katie75279 jess_s

      Posted

      Thanks that makes me feel heaps better, I know that the neurologist said it would be under X-ray so that's good. I'm 29 and have had 1 child. 
  • Marmot
    Marmot BezB

    Posted

    I want to empathise with your experiences of LP. I was dreading it but it was so much worse than expected. I had three different doctors attempt mine over an hour. I felt fine that day but the following 5 days I was very ill. I arrogantly didn't take time off work and this prolonged the problems as I wasn't resting. My head felt like it was being sucked into my spine, I felt light headed and I vomited intermittently for several days. It was incredibly debilitating. 2 months on I still have lower back stiffness. 

    I have several roles. I became a patient a few months ago and I am also a dr. I have performed LPs on others numerous times. I think this made the anticipation worse as I knew what to expect and knew it can be tricky to get CSF. Incidentally I always use local anaesthetic but different people have different ideas about this. Becoming a patient has been a sobering experience. I am now victim to the fear and anxiety that I have tried to protect others from for so long. 

    I wish you all well in your individual journeys.

  • mstiefelsmith
    mstiefelsmith BezB

    Posted

    Hello there,

    You have a condition called intercranial hypertention. Look it up. Google it. It is from too much pressure/ fluid around the brain. I have it and so does my son. It comes on without warning and is treatable but not curable. I take water pills and must control my sodium intake. Good luck.

  • expos81
    expos81 BezB

    Posted

    That sounds awful. I had a lumbar puncture last year to test for MS and I read all these horror stories and was dreading it.

    When the doctor was doing it I asked him to tell me when he had started and his reply was 'five minutes ago', the worst part for me was the injection to numb it, without that I do feel sorry for anyone. Thankfully in the end I felt no pain, I spent most of the 10-15 minutes chatting about sons of anarchy with him. I told him I was dreading it and read all sorts of lumbar puncture stories and he did say if the doctor doesn't do them a lot then it can be painful but as I was in one of the best Neuro wards they had lots of experience doing them. Good luck anyone and hopefully it is painless like mine.

  • jess_s
    jess_s BezB

    Posted

    Spinal taps are supposed to be done under fleuroscopy. It should have been done by a radiologist in a hospital on a special bed that raises you to a 45 degree angle. If any bacteria got in your spinal fluid you can get horribly ill. He should have at least used the numbing meds. He was a narcissistic butcher. Don't go back to him.

    Never let a neuro do anything like that. They aren't qualified. Neurosurgeon yes.

  • joanne19156
    joanne19156 BezB

    Posted

    Hiya I've had the lumbar puncture from he'll too first attempt failed in the foetal position so they repeated it with me hanging over the chair I was crying it hurt so much and after wards I had excruciating pain in my back and the headache from he'll and my neck was in spasm 9 months on and I'm still in pain with no answers has to why I'm also having seizures too
  • caroline70043
    caroline70043 BezB

    Posted

    Lumber puncher

    Most traumatic experience of my life, I'm six weeks post discectomy and experiencing severe aches, had a lumber puncher while in the fetal position, after the anaesthetic the nurse said I was over the worse park, so I thought that wasn't too bad.As soon as she put the bigger needle in my right leg shot out like a reflex with the mist horrific pain straight down my right leg, she continued trying for the fluid and again my right leg went down and I was in excruciating pain, she seemed annoyed and left saying you just have to have an MRI, move your feet and the pain will go.The pain continued all day it was horrible, when my husband arrived a half hour later and saw the state i was in he went to ask for pain meds for me.The nurse showed him her palm and said she was speaking, when she certainly over my husband told her he wanted to speak to a nurse with manners, she quickly corrected him saying she was a Dr., She seemed amused at the fact that I was sobbing in pain. Next a different doctor came in s rea.ing at me all over the ward to get out of the ward i was no longer been treated there I was gobsmacked confused and still in agony, He continued screaming at me I asked why I was been thrown out of my bed.He said pointing to my husband"he upset my staff""long story short my blood pressure was talking and I was trown out into a turkey ob the corridor untill2.30 that morning g with no pain meds my while body was shaking g with the pain, I have never experienced humiliation and neglect from a hospital I. My life,,

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