Post Lumbar puncture pain

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Hello community. So I received a lumbar puncture almost 2 years ago and I still have pain around my spine in the precise area where the needle pierced me. The pain has been there continuously ever since the procedure. It feels like a dull tinge right on my spine, always limiting my movement and flexibility. Depending on my movement it can become a sharper tinge and pain. It feels like there is a little cyst that can hardly be felt but I'm pretty sure its there.

Admittedly, I have done little yet to try and solve this issue. I spoke to a couple doctors from the same medical establishment, but they just shrugged their shoulders. The pain is less if I am warmed up, loose and in warm temperatures. Also I did have a blood patch 3 days after the puncture. I had severe headaches for a week after but they went away for good after that.

Any advice would be greatly appreciated. Thank you.

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  • Posted

    Hi, 

    I stumbled onto this forum in my own quests for post LP symptoms. I’m also two years post LP from meningitis test..

    Which came back positive. Meningitis obviously comes with severe headaches so I’m wondering if I may have missed important clues in the 24 hrs following the spinal fluid withdrawal. 

    In exactly the injection site, is a feeling like bone grinding against bone .. 

    or the pain you feel if you put weight on a broken bone. There’s a strange numbness in my lower right groin and makes my right leg feel like jelly 

    (I’m a female 41 at time of LP)

    Lately for the past six months this band of pressure / pain / right eye blur / lower neck pressure/stiffness/utter exhaustion like I’ve got bricks for limbs!!

    I know how my body was directly prior ..

    I’ve recently researched PL Discitis..

    (Also get sour ish taste in back of mouth??) 

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  • Posted

    Hello,

    First of all I am so sorry you're still dealing with this. I had my LP back in November at a Kaiser ER to rule out pseudotumor. When I had my LP the resident dug around in my back for three hours and refused my request to use fluoroscopy. I experienced severe pain and my left leg jerked uncontrollably during the puncture attempts. Ever since my puncture I have painful muscle spasms at the puncture site followed by a sharp/searing pain that shoots down my left leg. Also I am still unable to bend over to tie my shoes and prior to all of this I had great ROM and flexibility so I understand your frustration with that. I went to my primary care provider (still Kaiser) and she said I have Sciatica. I told her I never had anything like this until after the LP and she is insisting I did even though this was my first time telling her about this new pain. I couldn't wait to switch insurance providers, however I was in and out of the hospital and missed open enrollment. Thankfully I found a new job and as of yesterday I am officially free of Kaiser! I am going to be seeing some specialists this month and tell them what happened to see if the LP had cause any permanent nerve damage. My mom's friend is an attorney and he thinks I have a case if I wanted to try and take it to court, but I will have to have my new specialists do a full assessment of me prior. I would for sure recommend going to another care facility and seeing a different doctor. I have found with Kaiser that they all try and protect each other even when severe mistakes have been made. My neurologist at Kaiser even sent in a report to the Kaiser legal team about my new pain and they tried to cover it up by saying I already had this pain. When I called the legal team and talked to a representative they asked I would be getting an attorney involved and I said absolutely and they immediately hung up on me. If there's one thing I can say is please advocate for yourself and find a doctor/specialist who will listen to your concerns and help you get better. Best of luck and I hope you get the care you need and deserve!

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