17th attempt at lumbar puncture, petrified !!

Posted , 2 users are following.

Hi all,

On tuesday i am having my 17th attempt at a lumbar puncture and am absolutely terrified as all the others have been the worst experiences of my life.! I have a stenosis and bone spurs in the very place they put the needle and even with xray they have not been able to get in. I have some diazepam from my doctor to help with the anxiety before the procedure but i'm so anxious already that i can't see me even getting into the car ! I am getting into a right state already and don't know what to do ? Should i cancel ? Should i suck it up and get on with it ? It doesn't help that i"ve heard successful lp's have resulted in memory loss, constant headaches for years etc

Krissy

0 likes, 4 replies

4 Replies

  • Posted

    Hi crissyboo,

    I guess I am an anomaly.  I live with so much pain that I my spinal tap was not a big deal.  I felt it happening, but it just didn't register on my pain scale.  You need to make sure that your doctor administers lots of spinal taps.  My problem came with the results.  I am sure that my fluid results were switched.  I was told that I tested positive for Factor V Leiden.  Next all of my family members were tested (Factor V Leiden blood test), no one had this genetic blood disorder.  My PCP agreed to have me tested by a different lab with a Factor V Leiden blood test and I was diagnosed as negative.

    My spinal tap fluid was conducted in the provider's office.  The fluid vials or results were mislabeled or swapped at some point in the chain. I never returned to that neurologist, as I already questioned many of his impressions of my health conditions (I moved from a metro area to a small town to be with my Mom in her later years).  My best advice (even if it costs more) is have your spinal tap drawn at a hospital (preferrably a university hospital) where the lab test(s) will be conducted and read. 

  • Posted

    Hi eileen,

    I live in uk and basically we get who we are given, it's so unfair we can't pick and chose who or where we are seen. I too have lived in pain for years and take so many different prescribed drugs i must rattle when i walk ! The pain i had was im my right hip area and was like nothing i've ever experienced before, i literally cried my eyes out and ive had 4 babies naturally, even sat doing my make up through one of them ! The doctor couldn't work out why he couldn't get in and why he kept hitting the nerve. I can't get over your results being mixed up thats awful ! Hope you get it sorted

    Krisdy c

  • Posted

    Hi chrissyboo,

    I wasn't thinking about your UK health care system.  My apologies.  Why are you having your 17th lumbar puncture?  What are your docs trying to prove or disprove?  A lot of docs are under the misconception that a lumbar puncture provides definative results.  To me, it sounds like a doc who is not able to put the pieces together. 

    Prior to everything going haywire at once,  I had seemingly random events occurring.  The docs could or would not look at anything happening to me as things in isolation.  Document every individual (random) issue and insist that they are related events.  Immune system markers are not static.  Even if you have a successful lumbar puncture, it is one moment in time and cannot be compared over time.  If your immune system is not crazy that day, you will be dismissed as someone obsessed with getting a lumbar puncture.  I wish you could get a new doc who would listen to you.

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