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New to all this, pre lumba

Posted , 3 users are following.

amanda99839
amanda99839

Hi all i was told 3 days ago i have fluid pressure on the brain & falling into the category of having iih iv been having optician & hospital appointments for the past 13 months, iv been struggling with alot of pressure headaches i have constant pulsating in my right ear & ringing every so often in the left, sometimes i get white floaters in my eyes to more later on in the day,

I just wanted a little feedback as to what you all thought, & what to expect with lumba & after iv had it.

Thanks 😊

0 likes, 11 replies

11 Replies

  • Christiwarrior
    Christiwarrior amanda99839

    Posted

    My personal experience with the lumbar puncture was pretty good. I thought it would hurt like all of the TV shows and Movies say it does but they numb you up. The person who took my lumbar puncture instructed me to let her know if I felt any pain down my legs because that indicated she was in the wrong space. I did feel that tinge and let her know and she quickly readjusted. I had to lay in the bed for about 30 mins. I had my cousin drive me to and from the appointment. I think they normally recommend no strenuous heavy lifting afterwards.
    • amanda99839
      amanda99839 Christiwarrior

      Posted

      Thank you for your reply much appriciated,

      I have watched a few videos but i still dont think il be prepared for it when the time comes, my mum will be coming with me so i won't need to drive & il have someones hand to squeeze how long does it usually take prob a question you won't know because everyones different.

      I drive for a living to so does that mean il be out of action for a few days after to?

    • Christiwarrior
      Christiwarrior amanda99839

      Posted

      It didn't take very long maybe an hour total? It's nice having someone there to hold your hand. They made my cousin wait outside the room though rolleyes. I gave myself the day off but I probably could have gone to work afterwards. There was little pain in my back but overall it was manageable. 

    • amanda99839
      amanda99839 Christiwarrior

      Posted

      I expected longer for some reason, & i hope i dont have to go in on my own i dont know how id feel about that. Glad to hear you wasnt in alot of pain im hoping not to take time off as i drive for a living.

  • amanda99839
    amanda99839

    Posted

    Thank you for your reply much appriciated,

    I have watched a few videos but i still dont think il be prepared for it when the time comes, my mum will be coming with me so i won't need to drive & il have someones hand to squeeze how long does it usually take prob a question you won't know because everyones different.

    I drive for a living to so does that mean il be out of action for a few days after to?

  • Guest
    Guest amanda99839

    Posted

    I had my lumbar puncture just over three weeks ago. The most painful part was the start where the doctor is pushing his fingers along the spine to determine the best place to do the puncture. The numbing needles hurt for a moment, but they are good at doing their job and I didn’t feel much else until the end when excess fluid was being removed (the puncture area and lower back area felt very tight, like a bad cramp).

    I did start to cry at one point, not because of pain but because I asked the doctor what the normal cerebral-spinal pressure ranges were, and then I heard him tell the nurse what mine was. It was soo high that it freaked me out. So ask at your own discretion.

    My doctor recommended I stay laying down at the clinic for at least 1.5 hours afterwards in hopes of preventing complications*, and to stay in bed the next day and take it easy. The day after the puncture I was super tired and felt uncomfortable- like tightness in the lower back. Two days later I felt much better and was able to stand and walk around. However, I started getting really severe headaches and feeling nauseous, and a few hours later I lost most of my vision in one eye for about fifteen minutes, so I went to Emergency.

    *Turns out I had post-lumbar headaches, due to the puncture in the spine not healing fast enough- so I was basically slowly leaking fluid causing the pressure was way too low. They differ from the IIH headaches. With the low-pressure ones, laying down I was fine, but standing up or sitting would instantly bring me to excruciating pain. The solution was to stay laying down for another 3-4 days. I would only get up to urinate and have a quick shower. It was bad, but it did heal itself. If it didn’t, doctors can seal it by doing a bloodpatch of your own blood on the puncture hole.

    • amanda99839
      amanda99839 Guest

      Posted

      How do you feel now after it all?

      Im not a fan of needles so i may freak out at the sight or thought of them.

    • Guest
      Guest amanda99839

      Posted

      I also have a pretty big fear of needles, but at least you won't see them at all, so it was manageable. My head felt really great right after they took out the excess pressure. According to the medical literature that I read, it takes only 1.5-6 hours for the cerebral spinal fluid to refill around the brain- So benefits are short lived.

      Overall the experience was really worth it, because it enabled the neurologist to confidently give me the IIH diagnosis and prescribe medication (Acetazolamide / Diamox).

      Also I should mention, just before I had the lumbar puncture, I had a brain scan to make sure that there wasn’t another cause of the high pressure (things like blood clots can cause pressure, and probably have a different treatment). My brain scan came back looking normal.

    • amanda99839
      amanda99839 Guest

      Posted

      I had a mri scan 24th dec 17 they gave me the results to that in my last consultation said i have a downward dent on one of the nerves & thats due to pressure pressing on it,

      Did they decide on thr medication side of it in the sane appointment as doing the lumba? Sorry for all the questions.

    • Guest
      Guest amanda99839

      Posted

      Yes, an hour after the lumbar puncture, the Neurologist gave me a prescription. I was prescribed Acetazolamide 1000mg per day  (500mg twice a day). I was told to start with half that amount and slowly work up to the full dose over a few day to get used to the side effects (for me: reduced appetite, fatigue, tingling in hand during morning).

      No worries about the questions smile

    • amanda99839
      amanda99839 Guest

      Posted

      Im trying not to worry about it just yet as they said i have it mild so its a wait & see as im still waiting for the appointment for the lumba, but its good to know what others think & feel about it to.

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