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Thread: Intermittent leak after lumbar puncture ?

  1. #1

    Question Intermittent leak after lumbar puncture ?

    Hi. I know this forum was way more active years ago but I hope I'll find some answers here anyway ! :)
    3 days BEFORE my LP, a very slight bilateral tinnitus hyperacusis and clogged ears feeling came from nowhere.

    I then had a LP and, the day after, a post lumbar puncture syndrome. Headaches, vertigo, and my ear issues were way more intense.
    I had a blood patch 5 days after, but sadly it was was completely ineffective.

    I stayed laying down 23h a day for 2 weeks before the headaches disappeared in a couple of days, which was kinda impressive.

    I still had irritating ear issues, plus vertigo, plus very, very bad nights which started with the post lumbar puncture. A lot of vivid, anxious dreams and nightmares, short nights, awaking every hour. I also had a weird sensation in the back of my head but I didn't notice it at this time because of all my other symptoms.
    I wasn't feeling well.

    I was taking small doses of alprazolam (3 x 0.125g a day) for my anxiety but the horrible nights stayed the same. One week after the headaches was gone, because of my rough nights and ears issues, I had sort of a breakdown and cried in the morning, then in the afternoon I was exhausted. I had an appointment with a doctor which replaced my aprazolam by bromazepam. She told me to take half a pill (a pill is 6g) in case of panic attack and half a pill before sleeping.
    I took only half a pill before sleeping. Two nights after, I was sleeping well.

    I then reduced the dose to ¼ a pill before sleeping, and my nights were as good.

    Because I was feeling better, I took a look at my current symptoms and I noticed that I had a very weird, unpleasant, mind-numbing feeling in the back of my head. Like a pressure issure or a weight. My vertigo was still here and constant since the LP, althought it seems to be reduced when I'm laying down.
    After a few days I noticed that this head feeling was always absent when waking up and during the morning, and slowly increased during the day to be sort of "debilitating" at the end of the day.

    I had my lumbar puncture 1 month and 1 week ago, and I still have this feeling which drives me crazy some days.
    As I said, it is ALWAYS absent when waking up the morning and for the next hours.

    Sometimes, it fluctuates.
    Today, it was bad from 11 am to around 14-15 pm, where it almost disappeared. It came back around 19pm.

    But most of the time, it increases in the afternoon and is worse at evening.

    I also have a slight pain between two vertebras. I noticed then pain when leaning front, and the pain is also here when I put a slight pressure with my finger between these two vertebras, which is I think the area where I had my LP and/or my blood patch.

    Do you think this could be characteristic of a slow or intermittent leak after my LP ? I couldn't talk to my neurologist and my next appointment is in september, but I'm not sure leaks are his specialty because he had no idea that ear issues could be a consequence of a lumbar puncture.

    I read this archived message in which the author describes symptoms very similar to mine :

  2. #2
    Distinguished Community Member agate's Avatar
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    Hi vangrew,

    Since you indicate you were here at an earlier time, welcome back.

    I happened to see your post though I usually look only at the MS board.

    You say you had ear issues before the LP, and now, over a month after the LP, you still have ear issues. Have you addressed the ear issues--maybe by seeing an otolaryngologist or at least your primary care doctor?

    It's possible that once those are resolved, the other problems will diminish too.

    I haven't addressed the matter of the medicines you're taking but those are worth looking into as well, in case there are side effects.

    Would it be possible to see the neurologist earlier than September? Sometimes a doctor's office will put you on a list of people to be notified if somebody's appointment is cancelled. The neurologist should know at least a little about LPs.

    Your life must be quite uncomfortable. I hope you'll find some answers soon.
    MS, diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009.

    "Always put off until tomorrow whatever you think you should do today." --Anonymous

  3. #3
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Vangrew)))))) ~


    I don't know anything about lumbar punctures, but your symptoms sound concerning, and I'm sure you're suffering. September is a long time to wait to see a neurologist, as agate said.

    Have you considered going to an ER?

    I wish I had more advice or some insight for you. My thoughts are with you, and I hope you find relief soon.

    Love & Light,

    Mom to Jon, 49, and Michael, 32, who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003. Our Angel Jon received his wings April 2019. April 2020, Jim, the world's most wonderful Dad, joined them. Now, they all watch over me.

  4. #4


    Thank you for your replies and your support.

    I wrote an exhaustive reply, English is not my native language so it was long to write, but the forum logged me out and I lost my entire message.

    Well, let see if I can do shorter.

    My issues started by the April first, with a pain when I was moving my right eye. It was diagnosed as an optic neuritis. I had a treatment for this (just after the LP) which didn't work.
    Now I don't have any pain (the pain disappeared before the LP) but a white veil appears in my sight after a few minutes when I'm exposed to light (it may be increased by physical efforts, not sure yet) and it decreases when I'm in a darker place.
    I had a cerebral MRI before the LP, then the LP and two weeks after, a medullary MRI. They were all normal. And because my eye didn't react to the treatment, my neurologist thinks it's maybe not an optic neuritis and advised me to see an ophthalmologist, which I did. All the exams were normal too and she told me it could be a circulatory issue so I have an appointment with a cardiologist.

    So, I'm going back to the other symptoms : I had an MRI on a morning with headset and earplugs a few weeks, which showed nothing. My tinnitus started the evening after and I noticed a slight hyperacusis on the days after. It was slight and I was wondering if I wasn't just my imagination.

    My neurologist told me to see an ENT for my ears issues.

    I've seen two ENT.
    The first one did some exams. Nothing wrong with my ears except a minor hearing loss at 4000 Hz. I didn't have any trauma recently so it could have been here for longer before my new symptoms came up. He told me that the symptoms would go away by themselves (yeah, sure… Magic).

    The second one didn't tell me much. He advised me to see someone like a psychologist for my tinnitus.

    Two medical students told me some of my issues could have a physiological cause near my neck as neck issues can cause eyes and ears issues.

    My general practitioner thinks my eye and ear problems are linked and she advised me to see a physiotherapist too.

    I contacted a dural tear specialist which told me my symptoms could be from an LSF leak, even if the headaches have disappeared. He's supposed to take a look at my case by email and I don't have any reply yet (it has been only three days though).

    I've seen two physiotherapists, one each.
    The first one was weird. He almost didn't talk to me, asked me stuff and didn't explained at all what is was doing. He put his hands on me at various places and almost didn't move them. The weirdest part was when he took my head in his hand for minutes with one finger in each of my ears…
    The second one put me on a special waterbed with powerful jets for a hydromassage. He didn't examine me, didn't touch me. Looked like he didn't care about my symptoms at all. I Didn't like that.

    So I'm going for a third.

    I'm not considering going to the ER as it's not an emergency and I'm pretty sure they won't do anything as my doctor told me to see a physiotherapist, so I must explore this path I guess.

    That aside, I've not been taking medicine for days now, but I looked at the possible side effects and they don't seem to be related at all to my symptoms.

    Also, I'm not depressed, I sleep well, I eat, I go out, I work, I do sports.
    But I'm angry. I'm 32, I always have been in good health, various symptoms coming from nowhere appears in my head during April and may, almost all my exams don't show anything, the doctors don't really know what's going on. It's just so random and uncomfortable.

    Thanks again for your advice & support. :)

  5. The following user says "thanks"

  6. #5
    Distinguished Community Member agate's Avatar
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    Hi Vangrew,

    You've had an unfortunate round of unproductive visits to medical providers who haven't provided anything useful, I'd say.

    But if I had a white veil developing over my eyes and an ophthalmologist found nothing wrong, I'd ask that ophthalmologist what was causing that white veil and what I could do about it.

    It's an eye problem, he's the eye doctor. He should at least have offered an explanation, and if the explanation was "It's psychological" and you know it isn't, I'd find another ophthalmologist.

    If you still have pain when moving your right eye, I'd mention that too.

    You've tried your best to sort this out on your own. I hope someone with appropriate expertise can get some better answers for you soon.
    MS, diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009.

    "Always put off until tomorrow whatever you think you should do today." --Anonymous

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