Lumbar Puncture, who had it done? (spinal tap?)

Discussion in 'Fibromyalgia Main Forum' started by karinaxx, Apr 7, 2007.

  1. karinaxx

    karinaxx New Member

    i have to go to the hospital for a lumbar puncture in two days and would like to know about your expererience?

    i am very nervous about it, especially because i am under immense amount of stress, due to family problems and whole lot of other stuff.
    not sure i can go ahead feeling like this?

    anybody, any advice?

  2. mossrose101

    mossrose101 New Member

    I had a lumbar puncture. I too was very concerned about having this done. In fact, I cancelled my first appointment to have it done. I did some internet research and will share a couple things that I read.

    First, in my case, it did not hurt at all. I felt nothing. The doctor did a great job. I sat on an exam table which was very close to a wall. I sat facing the wall, bent over and had my head resting on the wall with a pillow. It took about 15 minutes. They insert the needle and you have to sit there until some of the fluid comes out and is collected. I read that its good when you have a doctor who has done alot of these because they are better at it and they know about using smaller needles to collect the fluid.

    I also read to drink alot of water and caffeine before and after having it done. I probably drank 32 ounces of water on the way there and also had 3 cups of coffee. Afterwards I layed in the backseat of our truck and tried to have my head lower than my body. When I got home I layed on the couch all day, drank some caffeinated soda and water and just rested all day.

    From what I read, the caffeine, water and rest are the key. Just dont over-drink. By that I mean just be well hydrated.

    The next day the spot on my back was just a little sore and I also rested the next 2 days. Do not overdo and dont do any heavy lifting.

    Do a google search on lumbar puncture and you will find some good info.

    Good luck to you!
    [This Message was Edited on 04/08/2007]
    [This Message was Edited on 04/08/2007]
  3. karinaxx

    karinaxx New Member

    thanks for your detailed description.
    it calmed me a bit and it sounds not so bad.

    i will stay for 5 days in the hospital, so i think i will have enough time to rest .....
    anyhow, will take it into account and plan ahead with my kid.

  4. mossrose101

    mossrose101 New Member

    If you are staying in the hospital for 5 days, you will be just fine! After a couple days I was back to normal...whatever that is these days lol.

    Again, good luck with the outcome.
  5. Lendy5

    Lendy5 New Member

    Hi Karina - I have had this done a couple of times and it was uncomfortable but bearable. The worst part for me was I developed a Spinal Headache and they had to go back in to relieve it. This is one of the worst headaches you could ever imagine and only a small percentage get these after the procedure.

    During a lumbar puncture procedure, you typically lie on your side with your knees drawn up to your chest. A local anesthetic is injected in an area over your lower spine to reduce discomfort from the procedure. Then your doctor inserts a needle into your spinal canal, measures the pressure and collects fluid for analysis. The entire procedure usually takes about 45 minutes. Once the procedure is complete, you'll need to lie flat for 20 minutes to one hour.

    You can Google Spinal Tap for lots of information.

    Good Luck and try not to worry.

  6. California31

    California31 New Member

    One of my neurologists ordered the tap...and then my rheumotologist....said it was unnecessary....he thought the reason for the test was too remote....and I ended up agreeing with him. All the best.
  7. karinaxx

    karinaxx New Member

    i read about this headache and i am expecting it.
    i am more worried about the bleeding and the pos. of leakage or damage to a nerve.

    i am beeing checked for MS and CNS damage, vascular stuff.
    i dont think that it will show anything new, since i am a typical case of CFIDS, but it has to be done once and there were small difr. in the MRI and i was having trouble with walking due to paralizis of the left knee on top of all the "NORMAL CFIDS stuff"

    These doctors dont know much about CFIDS and want to find a explainable reason for my symptoms and "shed some light in this whole story".I had to smile, but kept any comment to myself.

    I am at the same time beeing checked with my son by Dr.Meirleir in Brussels and i am expecting more help from him, than anybody else.
    His first simple test for fructose malabsorbtion has allready been a great success: my sons "IBS" symptoms have disapeared as long as he keeps fructose out of his diet.
    also i got my recent bowl and gas problems under control.
    doctors here at the biggest hospital in Switzerland, could not give me an explanation for my sons problems after 8 years of troubles!!!!!

    thanks again everyone,
  8. mezombie

    mezombie Member

    Hi Karina!

    I'm sorry to hear you have to go through this. I hope it will shed some new light on your health problems.

    Several doctors have told me the key is to lay still, not move, for 24 hours after the puncture if possible. This helps avoid the headache. It really is very bad, so you do want to try to avoid this!

    Best of luck with this.

    Das Zombie
  9. karinaxx

    karinaxx New Member

    wie gehts?
    thanks for your tip!
    i hope to find the time soon to write to you. maybe when i am in the hospital.
    i am in such a stress with familya and stuff; more than i imagened, even though i knew it would come, once i am here.
    they really dont understand anything and dont care!!!
    please write to me about your developments and how things are for you in the moment, even if i can not write back immediatly it is nice to stay in touch with likewise ...(cannot stand the so called "normals" anymore!!!)

    i realize more than ever before, how important it is for my soul, to be in contact with all of you "in the same boat."
  10. pam_d

    pam_d New Member

    Take the headache thing seriously. I have read about people who have had the killer headache for a YEAR, no kidding, afterward. But I'm not trying to scare you, because it's totally preventable---I had NO headache with my spinal tap, but I laid flat for about 45 minutes afterward; and it's true, drink caffeine afterward. I'm not a coffee drinker, but I stopped and had a large caffeinated coke on my way home from the hospital. The whole procedure went fine for me.

    But truly, the headache that can occur is no normal headache, so just take the steps they tell you about, lie flat for as long as they will let you lay there, and you'll be fine. My doc was great about keeping a running conversation with me going while doing the procedure, which helped distract me during the whole thing.

    Good luck!

  11. karinaxx

    karinaxx New Member

    ok, i will keep still and lay down and drink a lot before and have a coffe before and after (gonna be a speed zombie; cant take coffee in the morning) and will ask for the blood patch.
    thanks for all the good tips

    still scared, i dont know, just got a feeling this is not gonna go well.....
    usually my feelings are very often right.


    take care everyone
  12. debhun

    debhun New Member

    They will not do a blood patch unless you get a spinal headache. I got a spinal headache in Jan when I had sugery. They didn't put me to sleep. Put it only hurt when I sat up so I laid in bed and drank alot of cokes. That did the job. then I could move around the house till the next day. I was better in a few days.

  13. pam_d

    pam_d New Member

    These are done every day---all I'm saying is, often they give you post-procedure instructions that go in one ear and out the other, but this is one case where it pays to follow the instructions to the letter.

    I did that, and didn't experience even a slight headache, let alone a major one. Lay flat as long as they will let you---in my case, they didn't need the room for another procedure immediately, so I remember staying another half hour, flat. And I think it paid off, since I was headache-free. And the procedure itself went smoothly, too. I just chatted with the doctor and nurse, but kept real still otherwise. All was fine.

    We don't want to make you more fearful---just follow the directions faithfully, and I think you will find things go smoothly. Let us know how it goes...

  14. Lichu3

    Lichu3 New Member

    Hi, Karina,

    I requested a spinal tap when I first got CFS since I had a very bad headache. The tap itself isn't very painful - some prickly pain on needle insertion and mostly pressure after. About 30% of folks (myself included) will develop a headache - mine lasted for about 3 days. It usually doesn't last more than a week and is most painful when you are sitting or standing up. A smaller gauge spinal needle somtimes decreases the chance of spinal headache. Docs are reluctant to do blood patches because it means you have to get another spinal tap and endure the risks of bleed, infection, nerve damage again.
  15. nightngale

    nightngale New Member

    what is the lumbar puncture for? Hope you do ok. Sounds like some good advice here.
  16. Lendy5

    Lendy5 New Member

    Hi Karina - Sending you (((((Hugs))))) for the procedure today. Hope everything goes well.

  17. cherylsue

    cherylsue Member

    It's wonderful that Dr. DeMeirleir helped you and your son with the FOS and bowel problem. I read he is focusing on the gut in his research of CFS.

    Is he the one who ordered the spinal tap? It seems that they should have been able to tell by your MRI if you had MS. Is it really necessary that you have this test? Is it for you of for your doctor?

    I think you may need to ask some more questions. You can always postpone the test. That's my opinion.

  18. mezombie

    mezombie Member

    and that you are part of the 70% that does not get a headache!

    Please rest and take it easy.

    La Zombie
  19. janasw1

    janasw1 New Member

    I had one done a few years ago, when I was a scaredy cat 16 year old...

    The WORST part of the whole thing was the fact that I was so NERVOUS!
    It hurt a little bit, kinda just like getting a shot or something, and it feels weird because you don't normally get fluid sucked out of your spine, but as long as you trust your doctor you should be fine.

    I had to lay in bed for about 4 hours afterwards (the whole thing took maybe 3 minutes), which no one told me so my advice is GO TO THE BATHROOM BEFORE THE PROCEDURE!!!

    Good luck and try not to worry!

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