The Dreaded Spinal Tap

The Dreaded Spinal Tap & Tears

No matter what we call it – lumbar puncture, spinal tap, or even just LP – we all dread the idea of this procedure being done on ourselves or anyone else.1,2 The mere idea of having this done has brought many strong people to tears. The LP is done by a highly skilled medical person inserting a long, thin needle into the spine between two vertebrae and extracting a small amount of the cerebrospinal fluid (CSF) which surrounds and protects our brain and spine. The test is done for a number of different inflammatory diseases and is routinely used to substantiate the diagnosis of Multiple Sclerosis. There are markers in the CSF called o-bands, that can indicate the possibility of a demyelinating disorder, but it doesn’t prove we have MS. It’s a test I keep hoping will fall out of favor because it is such a scary prospect to be told you need a spinal tap.

I must say my LP was done by my neurologist in his office, with absolutely no complications. As soon as it was complete, he sent me on my way and even though I had been forewarned about the dreaded post-LP headache, I had no problems. Unfortunately not everyone is so lucky and I have read that up to 25% of all people who have an LP develop this headache , which comes from the puncture wound not healing rapidly and allowing the CSF to leak from the spinal column. The headache only occurs when the person is standing – it doesn’t hurt while lying down, which is often the only prescribed cure. For extreme LP headaches the doctor may do a blood patch – taking a small amount of blood and injecting it into the place where the CSF is leaking. The blood patch works like a natural bandage and seals the minute puncture wound.

The LP isn’t the most comfortable of test procedures to undergo, but is often essential. The LP is also used for people who have been on nataluzimab (Tysabri) and may be showing suspicious signs of converting to JC virus positive status, which would increase the risk of developing PML. PML is shorthand for progressive multifocal leukeoencephalopathy, a rare brain infection that has been associated with the use of Tysabri by people who are JC Virus positive.

Although I came through my LP with no problems, it’s not a test I would quickly volunteer to do again and now it turns out there may be an alternative way to sample the CSF. Researchers in France released the results of their study Tear analysis as a tool to detect oligoclonal bands in radiologically isolated syndrome.

They studied a group of people (n=45) who had been diagnosed with Radiologically Isolated Syndrome (RIS). RIS is where the MRI tests show areas that may be MS, but there are not the other clinical signs to support a diagnosis of Multiple Sclerosis. The researchers were looking at alternate ways to collect our bodily fluid that might show markers of oligoclonal bands (OCBs).

They looked at the question if our tears can be tested for the same markers as those in our CSF obtained through an LP. In place of the long needles, they used strips of paper that wick away the moisture from the eyes and can be tested for OCBs. Some of you may have had this type of test done at the ophthalmologist when being checked for dry eyes. I had this done by mine and it was more uncomfortable than my LP – having strips of cardboard stuck under my eyelids for several minutes was a different form of physical torture. It literally brought tears to my eyes, which I guess was the point anyway.

The results of this intial trial with a small sample of participants looks promising. They found “In 45 recruited RIS patients, OCBs were detected in CSF for 55% (25/45) and in tears for 50% (21/42) of samples.” That number is pretty close to each other and it looks like they may be on to a good thing to change how the CSF is tested.

It has long been the thought of going through the lumbar puncture would reduce even the strongest people to tears in fear of the procedure. If further tests show this is a reliable method, the shedding of tears over the collection of CSF would be welcome.

Wishing you well,
Laura

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.
View References
  1. Mayo Staff Clinic. Lumbar puncture (spinal tap). Mayo Clinic: 2014.
  2. Lebrun C, Forzy G, Collongues N, Cohen M, de Seze J, Hautecoeur P, on behalf Club francophone de la SEP and RISConsortium. Tear analysis as a tool to detect oligoclonal bands in radiologically isolated syndrome. Rev Neurol: 2015.

Comments

View Comments (13)
  • Lisa
    4 years ago

    i had a spinal tap to confirm my diagnosis in 2009 and had absolutely no problems. i didn’t even know when my neuro was finished and i got up after a few minutes.

  • Sea Level Girl
    4 years ago

    The first LP I had was extremely painful, and took three tries. The nurse was holding my hand to comfort me, but the doctor was irritated and kept saying the procedure doesn’t hurt. Also, as a first timer, I had NO idea that the table would suddenly be moved to an almost upright position – I thought it was broken and I was falling, with the needle in me! The second time, I quietly talked to the doctor beforehand, explaining how it went and that I had been very frightened. He suggested doing the puncture a little higher on the back (going with the idea I have some arthritis in my spine since I am 63) and using a pediatric needle. It was over before I knew it! No pain whatsoever, just some pressure. He mentioned that most doctors don’t like to do that because it takes longer to gather the sample, but for me to make sure I ask for the procedure the way it worked for me. Hope this helps.

  • Lin
    4 years ago

    People honestly need to know the whole truth! LP’s, Lumbar Punctures, Spinal Taps, whatever you want to call them..are dangerous! and should not be done to determine MS. The medical community will tell you that they are safe, but they are NOT! There are many, many people (like myself) who go on for years suffering because of them. I was told that there was no chance of a CSF Leak by the anesthesiologist who performed mine. He was so wrong. The probelm with puncturing your spine is that it weakens that area and even if you do not get a leak at the time, you are more suseptable. I have had 6 blood patches and spinal surgery to fix my leak now and it still is not resolved. I cannot be upright and I am dizzy 24/7. MS didn’t take my life away, but the LP sure did!

  • Adriann
    4 years ago

    Since I only had 1 and that was back in 2001 , all I can say is I hardly felt a thing as I was more concerned about finding out what was up than about the repercussions ..

    Since I do not take any of these new meds for stabilizing relapses as they seem to only be more of an issue than the MS itself , I am just wonder if it should be necessary for us to have another Spinal Tap along the way to see how we are doing ??

  • Laura Kolaczkowski author
    4 years ago

    I don’t know why you would need another one for MS if you are not being monitored for complications from treatment – there is a growing pattern of repeat LPs for people who are on Tysbari but even that is not common. of course you could always have another reason a doctor needs to check, such as suspicion of meningitis 9totally unrelated to MS) – Laura

  • Nobu
    4 years ago

    I have only had one lumbar puncture and that was several years ago now. I was very apprehensive but I did find that once the needle got past the top level nerve point which did hurt a bunch, it was not nearly as unpleasant as the lower GI that I had the year prior. That felt like I was a car on lift having my oil changed over a very long time. I still dreaded the lumbar puncture, but I think I could face it now with more ease. I hope everyone is more scared and finds it less a problem when it is actually done.

  • Theater Geek
    4 years ago

    I had lots of LP done in kindergarten when I went blind for a year. They weren’t looking for MS because this was the 80’s and they didn’t think kids could have MS at the time. But no numbing or anything back then…just a really big orderly holding me down and lots of pain. Bad bad memories so when they wanted to do one in 2001 of course I was like I don’t want to!!! But I eventually said ok and they numbed me up like an epidural and had the machine that was like x-ray so they could see what they were doing…no pain at all but they did hit a nerve in my back that has led to arthritis in my right hip now. If I needed one again I’d do it…but if I could do something else I’d pick that as well.

  • Constant Reader
    4 years ago

    Even though I had a bad spinal headache before finally getting a blood patch, I would still get a spinal tap today almost 10 years since I was diagnosed with primary progressive multiple sclerosis. Although I had had a couple of MRIs, at the time I had no lesions on my brain, so the bands in my spinal fluid were the only way to diagnose my disease. I am thankful that I got a spinal tap but I hope I never have to have another one.

  • Sue
    4 years ago

    I had a spinal tap while under anesthesia, which was definitely the way to go for me. However, I ended up with the dreaded headache and my then neurologist never prescribed the blood patch! I was down and out for a week, and, as Laura said, only being flat on my back helped. My current MS specialist doesn’t do spinal taps anymore; she looks at MRIs and gets your history, and goes from there.

  • Troy
    4 years ago

    It was hard for me reading this one, I cringed, shuttered and honestly skipped a few sentences. I was one of the lucky 25% that ended up a week later having the blood patch. I would never do it again. I even had it done in radiology with the scope that Kim Dolce talked about. Whenever I have people ask me about it I try and keep my comments to myself because I know not everyone will have the same issue as me.
    Never again are strong words but it would have to be a life or death situation before its done again.

  • Lin
    4 years ago

    It is true, if you have had a CSF Leak before you are more susceptible. I had a CSF Leak from an epidural during childbirth. Had 2 blood patches and then no problems. I went for the LP to diagnose MS and the anesthiologist told me there was no chance for another leak. He was Dead wrong! I developed a leak. Then the dr. that was doing the blood patch didn’t know what he was doing and poked me over and over. It has been 4 years now and I have had 5 blood patches and been to california’s Cedars Sinai 4 times for treatment/surgery. I am still bed-ridden from it. Not the MS.

  • Kim Dolce moderator
    4 years ago

    After having six LPS, four the old fashioned way and two under fluoroscopy, I’m convinced that everyone should insist on having the LP done in radiology with the fluoroscope guiding the needle. It’s guaranteed to be painless since there is no guess work; the fluoroscope is a kind of x-ray machine that reveals the pathway. I’m done taking chances with doctors doing it manually and not being able to find the canal, probing me painfully in the process. It’s just not necessary to put us through that anymore.

  • Lin
    4 years ago

    If you have to have an LP, it should ALWAYS be done though flouroscope and by a dr. who is fully trained. Also, the smallest NON-CUTTING needle should be used.

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