1. Community
  2. Tests and investigations
  3. Lumbar Puncture

Extreme Constant Back and Neck Pain After a Lumber Puncture

Posted , 21 users are following.

Autumn3267
Autumn3267

I had a Lumbar Puncture 2 months ago to rule out meningitis and it turned out to be negative. I was admitted to the hospital for extreme fatigue, muscle weakness, and headaches. I was diagnosed with migraines and the lumbar puncture was just one of the many tests that they ran. The procedure itself took about 10 to 15 minutes and was very painful, however unlike a lot of the stories on here the doctor didn't miss or have to stick me several times in order to get my spinal fluid. They had me laying down flat on my stomach and used an x-ray to find where where he was going. After the procedure the tech. that helped the doctor told me to move myself to the other bed so that I could be transferred to my room as I was being admitted for further testing. The doctor told me to lay down on my back and be completely still for four hours which I did. I only sat up in my bed after the 4 hours were up however about 3 hours after I did sit up, I was in extreme pain in my back. I never had a headache after the spinal tap apart from the Migraines that they diagnosed me with but it did not result from the spinal tap. It has now been 2 months since this has happened and I have still not been back to work because I cannot bend over at all. My pain is from the puncture site in my lower back and shoots up my spine to up upper back and neck. It also will shoot down my right leg from time to time. Sitting is the absolute worst for me it, I can stand for a little while before it starts to hurt me really bad. A week after I had the spinal tap, I went to a pain clinic and had a MRI done to make sure that my spine is not leaking and its not. I am now in physical therapy twice a week and it does help but only while I am there. My doctors and my PT have never seen anything like this. Has anyone experienced anything like this?

0 likes, 33 replies

33 Replies

Prev Next
  • car61670
    car61670 Autumn3267

    Posted

    Hello everyone, it’s bitter sweet reading your posts. I had a c-section 5 weeks ago and a lumbar puncture 4 days after as I went to the Er complaining of back pain. Ended up being kidney failure but now 5 weeks later I’m in emence pain. Feels like the middle of my spine is just going to snap in half. It’s super hard with a new baby as every time I pick her up I could cry. 

    Doesn’t really sound like anyone can help us hey? sad

  • drew_37706
    drew_37706 Autumn3267

    Posted

      Autumn, I am so sorry to hear about your pain. I am in an Allied field, so I know a good bit about the nervous system, but I am not a physician so I’m obviously not offering a diagnosis.   But I have seen this before. Did you get the LP puncture to test for intracranial hypertension as a cause of your migraines?   If the spinal tap came back clean, but what’s called the “opening pressure” was above 200, that could mean that your body is over producing cerebrospinal fluid, which  is putting pressure on the nerves in your back, which can be excruciating. The condition, called I I H, occurs primarily in females of childbearing age who are overweight, or gained weight  rapidly. I’m actually trying to learn, myself, having read several reports like this on the web from people like you, whether the migraine and back pain are related to the same cause, because excess cerebrospinal fluid in the brain can similarly cause   Really bad migraine headaches, as well as some visual symptoms like sensitivity to light. You might want to ask your physician the following question: “what is my LP opening pressure above   200?“ If so,  and your cerebrospinal fluid was “clean,“ that would suggest intracranial hypertension. It isn’t easy to treat, although if you look it up,  there are two treatments that tend to be highly effective, one drug, and the other a medical procedure that drains the fluid into your body,  where it is simply absorbed, when the pressure gets too high. Once again, I am not a physician, so I’m not offering a diagnosis, but I’d love to hear your answers, and perhaps this might send you in a direction that could be helpful.  Don’t give up! I know how awful chronic pain is. I had periods of my own, which mercifully have stopped, of six months at a time where I couldn’t see it because  I had back pain so severe that I couldn’t sit.  
    • summer_60308
      summer_60308 drew_37706

      Posted

      Unfortunately on mine they never checked the pressure. I am scared to let them do another lp which would be the only way to check but my back neck and head have been in so much pain since idk what to so. They sont think i have a leak and dont thing im low on pressure per mris (although other drs have said mri isnt good at detecting) one said they think i have built up pressure and gave me diamox to try and said if its gets better good if not its low. Then another dr said dont take it cause if u r low it is gonna make it way way low. I know not a dr but what wpuld u do? Just looking for opinions. The symptoms of low and high csf seem to be so similar. I cant even tell if laying down helps anymore cause the neck pain is so bad regaudless and masks the head pain kinda.
    • lexykay13
      lexykay13 drew_37706

      Posted

      hi, im here looking for answers to the same issue. ive been recently diagnosed with idiopathic intracranial hypertension, if you have any advice or information for me about this issue id love to hear it. at this point im desperate for answers.

    • Jenny.
      Jenny. lexykay13

      Posted

      did you see a Neuro ophthalmologist to make sure you had this condition? the hospital said the same thing about me and it was a misread. i saw the Neuro ophthalmologist and they ruled that out. pretty much i had a lp for no reason and now i feel like my brain is numb and i have headaches. im hoping this goes away.

  • von77214
    von77214 Autumn3267

    Edited

    Can you give an update on your back pain. I had a LP two months ago and my back hurts still. In your post you said your pain was improved after 4 months but at 7 months still hurt. Has it improved since then?  My sister in law had an epidural and said it took her back 6 months to feel better.  I feel surely with time it will heal. I am getting discouraged though. 
    • janae3399
      janae3399 von77214

      Posted

      how are you feeling? i had a LP two months ago & was completely bedridden for about 3-4 weeks after. i only have an ache in my back if i move a certain way. i had ear ringing but it is slowly getting better. i do have pressure in my head and ears. im hoping over time these symptoms will subside !

  • stephen_46327
    stephen_46327 Autumn3267

    Posted

    Autumn, I am very sorry to hear about your pain and suffering.  I pray you are doing better.  My wife had an unsuccessful LP last Thursday (could only get .5 cc after two punctures) — they performed another LP yesterday (were successful in removing 12cc after two punctures) all to test for MS.  Today suffering from extreme pain in mid to upper back.  Gets some relief from standing but then head pounds.  DRs didn’t discuss back pain, only possible headaches.  Did you do a blood patch, if so, how long did you wait?  How are you now?  God bless!

    • Autumn3267
      Autumn3267 stephen_46327

      Posted

      I didn't do a blood patch because the doctors said that will only help if you are having headaches after the LP. which i was already having them before and they didn't get ant worse after sitting or standing up. Its now been a year after having the LP. I still have back pain every single day. Its constant for me but its no where like it was. I couldn't even sit down for any length of time after the LP. I now have been diagnosed with Fibromyalgia but I think i already had it before the LP and didn't know and whatever they did wrong during the LP caused my Fibro to flare like crazy. Hope your feeling better.

    • rinnie1334
      rinnie1334 stephen_46327

      Posted

      Stephen,

      Was your wife's situation ever resolved? I ask because I'm experiencing something nearly identical (my lumbar puncture was 3 days ago, and instead of stopping after 2 punctures, the doctor kept trying until he was successful - really not okay), but with the addition of progressively worsening stomach symptoms that began about 2/3 of the way into the procedure itself. I'd begun to worry that perhaps the doctor had fractured a bone or excessively damaged tissue (I have a connective tissue disorder), but all of this combined with incessant ear ringing has me here.

  • lexykay13
    lexykay13 Autumn3267

    Posted

    i had to have a lumbar puncture about 4 months ago and was diagnosed with Idiopathic intracranial Hypertention as well as Papilledema .(my pressure is too high) ive have some serious back pain radiating from my lower back into my neck. its like a white hot pain coupled with horrible migraines. ive been taking acetazolamide (diamox) since this started. nothing seems to help with pain and it does make life a bit rougher. my neurologist hasnt had much to say about all this because my condition is so rare. ive been scouring the internet trying to find a reason for this pain. on top of this, diamox causes tingling in the extremities which has only gotten worse and more painful. if you find out any bit of information that could help lead to answers, i know we'd all be grateful. i will also update if my neurologist comes up with anything as well.

  • mark73556
    mark73556 Autumn3267

    Posted

    I have similar situation like you. i had lumbar puncture 1 year ago... and now im having back pain every single day + leg weakness.... my back hurts in 2 spots... lower (lumbar) and thoracic (middle) area of my back... and i often feel muscle twitching and fasciculations in my back and legs and leg weakness... at some points i could barely walk... and i cant sit longer than 30 minutes... I done MRI of my back also and MRI was fine so i had to quit my job because of this problem because my doctor didnt believe me that i have these problems after lumbar puncture because its very rare.... And i have horrible headache in left side of my head... i Think this pain in my back will last forever. Im afraid how will i find another job and work because i cant sit or stand more than 1 hour max. I visited neurologist, and physiotherapist and neurosurgeon and none of them helped me. They said that its impossible that these problems are from lumbar puncture and that they cant help me. I have so hard anxiety right now... Im regreting going on that LP. I wanted to go on lumbar puncture because i was afraid that i had meningitis but i didnt had it. That was worst choice of my life. And now i need to suffer for the rest of my life.

  • lily62430
    lily62430 Autumn3267

    Edited

    I have had this. I had a lumbar puncture 7 years ago. I did have meningitis and was in hospital for a few days. They could not get the fluid and had around 8 attempts. The pain was so intensely painful and i could feel pain all over my body, particularly in my legs.

    After the attempts failed they had another doctor come in and he got the fluid straight away and said the previous doctor had been trying to take it from two inches too low. He sounded annoyed as by then my back had swollen up as if i had been stung by a bee.

    Since the procedure I have never been able to bend over properly without intense pain and i get stuck and need help getting up. im only 33 and never had back pain before that. I have started getting pain down my legs now and if im in the same position for too long I cant get up and my legs take ages to 'warm up'. i get sensations up and down my spine like hot water being poured and pain up and down my legs.

    No doctor will admit its anything to do with having a lumbar puncture. A doctor at pain clinic said she thought i might have nerve damage but she never mentioned it again.

    I had another viral infection two years ago and was again hospitalised. They said I needed a lumbar puncture but said they would not do it because of the complications I had previously that were recorded. Thats all they said and left it like that...

    I wish I knew what was wrong and i wish i had a definitive answer about what happened and why

    • jossbouFR
      jossbouFR lily62430

      Posted

      Hi Lily62430, your experience looks like my daughter's one.

      Because of brain AVM (arterioveinous malformation) she had 3 brain strokes (2016 2019 2020), fortunately without consequences except fear and suffer.

      But in 2019 she had multiple LP because it was difficult to confirm stroke (though she was sure it was), the first LPs being done by non experienced doctors at the hospital in Grenoble, France.

      Since that time, she is suffering from he low back, had to take morphin in the first months, now is able to support pain with paracetamol, but can not stay sitted more than 1 hour so can not work, can not dance, can not go back to normal life.

      We are searching for informations and experiences about how to hide the pain first (without strong morphinic addictive dangerous products) and how to fix the problem.

      Here in France, it seems to be very difficult to find some tracks to follow.

      I noticed that steroids could help (I know it is not very good for the body, but I will check)

      Thank you for reading my poor English!

      Jocelyn

  • steph68839
    steph68839 Autumn3267

    Posted

    hi i had a spinal tap 4 days ago an my lower back hurts so bad i get pain shooting into my left leg alot

Back to top
Prev Next

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.