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Thread: Frustrated

  1. #1

    Default Frustrated

    I am so happy that I was able to find this thread. It definitely makes me feel less alone, so thank you.

    About 5 weeks ago, I started with what I thought a bad sinus infection, my nose was running nonstop. I went into an ENT at the advice of my primary this past monday and he sent me for a cat scan as well an MRI. I was told that I am leaking spinal fluid from what they thought was a pituitary gland, but after a neurosurgeon viewed the test results, he said no that it was a simple tear in the membrane. Now back to the ENT, while he agrees it's a tear, he doesen't understand why it tore in the first place. He keeps throwing out different scenarios and diagnosis, but is consulting with different radiologists as well the same neuro surgeon. I appreciate his diligence at not jumping into the unknown, and while he says I am in no physical danger at this point, I am positively terrified. I have always been healthy, never the first issue. The only time I've had surgery was when I was 5 for my tonsils, and thats it except for child birth. I just want someone to tell me what is wrong without a doubt and fix it. He is now saying that one of the radiologists wants to do a dye test through my spine and run a cat scan. He doesen't want to put me through that, but we may have no option. All the while, if I tip my head forward just slightly, it gushes the fluid out. I have no other symptoms, no headaches, no dizziness, nothing. It's very frustrating to have something wrong with you and noone seems to know why. I wish they could just spray something up there and let me get about my life.

    Any advice or thoughts would be greatly appreciated.
    Lauren

  2. #2
    Community Member dagaz's Avatar
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    First of all Hi, all leaks are from tears in the Dura or membrane as you put it. They can be very frightening... My advice to you since your tear is obviously new. Rest as much as possible, no straining ( i.e. Bathroom, lifting etc). No lifting, don't bend over all of these actions put pressure on your head. I've been leaking since 1993 and I wish I would have heeded the advice of others. My leak will never heal unless by the grace of God. Lay as much as you can tolerate, when you have pain it's best to lay as flat as possible. Caffeine helps raise the CSF pressure which can help with the pain. If you can limit the strain on your head it just may heal on it's own. If you have a child don't bend over and lift it... I'm sorry that is a terrible thing to say but if it means the difference between healing and not.... I'm very sorry that you have to deal with this. Try to avoid highly infectious people because of your risk of bacterial meningitis.You need to know the signs of meningitis because you have a open direct route now. There are some wonderful surgeons in the States, ( in Canada) but if u search the archives you will find there is one in California that many here have gone to with success. If you cannot find the archives or the surgeons name let me know
    Your leak sounds like a spontanious leak, It has been suggested that people with connective tissue disorders are more likely to have spontanious leaks...... My leak was from sneezing after a brain surgery to remove a tumor. I've had 17 brain surgeries but my case is a little different but this is very serious and can be dangerous. Private message me if you want to talk to me... Good luck... Dagaz
    Last edited by dagaz; 05-18-2013 at 11:07 PM.
    Brain/Pit tumor=17 brain surgeries 20year csf leak(Feb, 1993) After initial tumor removal!, SPMS , Hydrocephalus from a intraventricular hemorrhage! Panhypopituitary, Diabetes Insipidus, tension pneumatocele, ( air under the skull next to the brain), 2 craniofacial craniotomies, several shunt revisions, 7 bifrontal craniotomies ... Dag "If I started crying I wouldn't stop!

  3. #3

    Default

    Thank you so much for your reply! It helped greatly. Now to throw another unknown into this, yesterday (Sunday), I leaked very slightly and now today so far I haven't leaked at all, even when I tipped my head forward. I sent the ENT an email about it. Hopefully they come up with a solid diagnosis soon, as you know this is so frustrating. Thanks again, I'll keep you informed on what's going on.

    L

  4. #4
    Community Member dagaz's Avatar
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    Many of us have tried to "see" if we are leaking. If your leak "stops" suddenly do NOT try and force it out. Our bodies have a way of trying to repair themselves, let it... don't test to see if your still leaking. If you are you will know it by the symptoms of pain etc. If your not, thank GOD! I was one to always check...well I did myself a great disservice because now I have several leak sites. The doctors will probably want to do a lumbar puncture, put die into your CSF and put small cotton pledgets into your nose to catch any csf( with the die or radio active material) on them. They also use another test called a fluorescein test. Where the fluorescein is used instead of die. Are you having pain? If so is it worse when sitting or standing and better when laying down? positional pain is one of the tell tale signs of a CSF leak... I really hope it's not what you have... a leak is HELL!
    Brain/Pit tumor=17 brain surgeries 20year csf leak(Feb, 1993) After initial tumor removal!, SPMS , Hydrocephalus from a intraventricular hemorrhage! Panhypopituitary, Diabetes Insipidus, tension pneumatocele, ( air under the skull next to the brain), 2 craniofacial craniotomies, several shunt revisions, 7 bifrontal craniotomies ... Dag "If I started crying I wouldn't stop!

  5. #5

    Default Similar symoptoms but NOt?... Please see "CSF Leack or What?... Wierd symptoms"....

    Hi, I have simlar, yet different symptoms as well. My question is: Should I go through with the "Pleget Lumbar Study"??!!


    Quote Originally Posted by LaurenSchuch View Post
    This quote is hidden because you are ignoring this member. Show Quote
    I am so happy that I was able to find this thread. It definitely makes me feel less alone, so thank you.

    About 5 weeks ago, I started with what I thought a bad sinus infection, my nose was running nonstop. I went into an ENT at the advice of my primary this past monday and he sent me for a cat scan as well an MRI. I was told that I am leaking spinal fluid from what they thought was a pituitary gland, but after a neurosurgeon viewed the test results, he said no that it was a simple tear in the membrane. Now back to the ENT, while he agrees it's a tear, he doesen't understand why it tore in the first place. He keeps throwing out different scenarios and diagnosis, but is consulting with different radiologists as well the same neuro surgeon. I appreciate his diligence at not jumping into the unknown, and while he says I am in no physical danger at this point, I am positively terrified. I have always been healthy, never the first issue. The only time I've had surgery was when I was 5 for my tonsils, and thats it except for child birth. I just want someone to tell me what is wrong without a doubt and fix it. He is now saying that one of the radiologists wants to do a dye test through my spine and run a cat scan. He doesen't want to put me through that, but we may have no option. All the while, if I tip my head forward just slightly, it gushes the fluid out. I have no other symptoms, no headaches, no dizziness, nothing. It's very frustrating to have something wrong with you and noone seems to know why. I wish they could just spray something up there and let me get about my life.

    Any advice or thoughts would be greatly appreciated.
    Lauren

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