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Thread: Hi I'm new in this particular forum

  1. #1
    New Community Member
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    Question Hi I'm new in this particular forum

    Hi, I'm new to this particular forum and had Sinus Surgery on September 27th, two weeks later on a Saturday morning after consulting a nurse via phone about having a week of painful migraine like headaches and then that morning having a clear fluid running from my nose, an ambulance was called and I was raced to the ER.

    The ER took their pretty time about it and long story short it was over 3 hour wait before they saw me for a consultation. I was examined fully by one doctor and he brought in a consultant doctor and they phoned my ENT surgeon who performed the sinus surgery. The ER discharged me after the phone consult and sent me home with a prescription for oxycodone 4 per day and a specimen container to catch any errant leakage from my nose again and a follow up appointment with my ENT in two days time.

    I saw my ENT yesterday afternoon and he looked with the camera up my nose to see if he could see the source of the leak, but no such luck and by then my nose was no longer leaking fluid. I have to wonder though as part of my sinus problems initially was post nasal drip. The specimen container was sent to a pathology lab yesterday afternoon also. I amusingly had to reassure my ENT that I was not upset at this turn of events - worried yes, but not upset with him as my body thinks it is amusing to hurt me as much as possible. He has just never had a CSF leak occur to one of his patients before - ever.

    My head, every single day my head feels like it's being squashed under a bus, constricted and feels like it weighs a tonne. The pain is always there but starts to get worse mid-afternoon and the night time is horrible. I don't know what is to happen next.

    I also have trigeminal neuralgia, occipital neuralgia, fibromyalgia, endometriosis, ehlers-danlos syndrome (genetic connective tissue disorder), familial hypercholesterolemia (genetic high cholesterol levels), osteopaenia (weak bones, the stage prior to having osteoporosis) and mild obstructive sleep apnea.

    Kind regards,

    Kerry (Immo)

  2. #2

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    Hi Kerry,
    That sounds gruesome. Are you any better with the headaches?

    I'm new here, too. I left work one day because my head hurt too much to concentrate, and I felt about two seconds away from throwing up all over the floor. I had a cold and I thought it might have become a sinus infection, so I did all the stuff for that, but then the sore throat and stuffiness went away and I was left with this bad headache that went away when I lay down.
    I'd wrenched my neck a few weeks earlier, too, and the MRI showed something near the neck that looked like it might be a leak (actually, only the radiologist and neurologist saw it. It just looked like neck to me. I wouldn't have known what to look for if they hadn't marked it with big arrows).
    So here I am. I think it's getting better, but every time I say that, I have some kind of setback.

    Have you tried diet? Like what they do for babies sometimes - you don't eat anything but rice cereal for a few days, and then you add banana, and then after a few days you add something else? I know people who've had some success with pain issues by avoiding certain foods.

  3. #3
    New Community Member
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    Hi elephantm and other readers,

    My headaches never got better. The leak from my nose didn't happen again for ages. In January, I had a craniotomy op called a Microvascular Decompression to 'fix' my trigeminal neuralgia and I started leaking again in April, May and still now in June however the leak volume has now increased substantially. To the point I was nearly choking last Sunday night laying in bed, the rush of fluid going down my throat on the right hand side had me choking. The cranial leak has been confirmed and I've been through a few different tests now, they can't find the leak as I am classed as an "intermittent cranial leaker" and I'm not leaking when they do the scans. A few days ago I had a lumbar puncture to inject dye and then 2 seperate CT scans to find the leak (hopefully) but I don't have any news on possible results yet. Now it's Saturday and I will have to wait till Monday to see if there is any more news.

    The lumbar puncture portion of the CT scan determined I had less than 3mm of fluid sitting in my lumbar spine and it took over an hour for that dye they injected to make it's way to my skull to allow them to take the first of the two CT scans that day.

    I don't know what will happen next if I didn't leak during that specialised CT scanning sessions at all. They know I've obviously leaked a lot of fluid, because of the low CSF volume left behind, but if they can't find the leak - what happens next?

    Cheers,

    Immo.

  4. #4
    Distinguished Community Member Jo6's Avatar
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    Hello Immo. I don't remember talking to you, but I may have. It's good to see you have returned and I pray they will find a solution to your problem soon.

    I found great comfort after too many days away to find my dear old friend, BrainTalk.org still here and just waiting for me. lol Well, it's here for everybody, but it does have a calming effect on me.

    It's good to have you back. I go to Emotional Support a lot and I would like to invite you to drop by and chat with us. It's any and everything there, so no getting off topic.

    Again I welcome you back and hope they find an answer to your problems soon.

    Julia I
    Did you ever know that you're my hero and every thing I would like to be I can fly higher than an eagle
    'cause you are the wind beneath my wings

    for my brother Ben

  5. #5

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    Oh, dear, i am also a new in this Forum. I joined here to know deep knowledges about cerebrospinal fluid. So, i am a person like you.

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