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Thread: Leaker Roll Call

  1. #11
    New Community Member
    Join Date
    May 2010
    Austin, TX

    Default Mostly healed

    So I had a spontaneous leak in April 2010. After 2 blood patches & a CT Myelogram I finally came up with the funds to go see Dr. Shievink in April of 2011 (don't hesitate - just go to him now). I still have subtle symptoms, but the most important thing I feel I need to share is get the CT Myelogram first. I know it's hard to be up right, & I konw you are scared & confused with why the pain/pressure when you are upright, but if you don't know what caused your leak, find out where it started!!!!!

    We (my now amazing husband & patient best friend) diagnosed me from the internet & this forum before we found my neurologist. The doctor's response was - "the fix is the blood patch, so shall we schedule it?" That would have been fine, but what he wasn't aware of is that it frequently takes multiple patches to fix & if you haven't located the actual leak, then you aren't sure if the fix it spot will be 100% effective. You can do it - you can handle the CT Myelogram. Get conscious sedation & put up with the pressure during the initial films & I promise you you will be happier & not so frustrated to continue treatment. I am on almost 2 years & almost fully recovered.

    My only drawbacks are headaches & pressure during weight bearing upper body activites (think downward dog in yoga or picking up really heavy objects or handstands). But getting better (as is my bank account after all the bills).

    Get information, go see Dr Shievink (specialist is worth the LA visit) & be patient with yourself.

    Cheers to no leaking in 2012!


  2. #12
    Community Member
    Join Date
    Oct 2007
    BC Canada


    Well this is really eye opening for me!!

    I did have a CFS leak [if I understand the concept correctly] after a lumbar puncture in yr 1985 to investigate a suspected meningitis infection... for three weeks I could not stand up or I would get dizzy and a terrible head pain. After those few weeks, the problem stopped.

    However, over the next 5 years, 1985 to 1990, I became disabled by chronic pain, fatigue, muscle cramps, and headaches = a diagnosis of Fibromyalgia from Dr. Uhbi at the Holy Cross Hospital in Calgary in 1992 or so.

    Could it still be happening? Could DFS leak explain my symptoms? As of 2010 I also started getting Trigeminal Neuralgia [Atypical] attacks... terrible thing.....

    I get lots of headaches, esp, this time of year {oct, nov, dec}, Sometimes my skin hurts, like it is burning..

    So, just a long shot - but could it be CFS leak that is causing some/all of my disabling pains?


  3. #13
    New Community Member
    Join Date
    Feb 2013
    Western Washington

    Default Acoustic Neuroma survivor

    Real name: Kathleen

    Location: Western Washington

    Age: 48

    Gender: F

    Type of Leak: Post Translabyrinthine craniotomy for 3.5 cm Acoustic Neuroma

    First Sign of Leak: 7/21/06 (2 weeks after surgery), treated with 8 day lumbar drain in hospital requiring 2 punctures to set drains.

    First Diagnosed: 7/21/06 and again 9/2010

    Brief Summary of Tests to date: 9/2010 Radionuclide Cisternography negatively diagnosed from the cisternography, positively diagnosed per the examination of the plangets placed in nostrils for the test. Checkup MRI w/gadolinium 9/10 as well showing no signs of leak origin. Suspect it may be from surgical site but I'm not 100% convinced.

    Brief Summary of Treatment to date: currently not seeking treatment

    Current Symptoms: unilateral Rhinorrhea from the leak, nerve/muscle/balance issues from the craniotomy, fagtigue/cognitive/generalized strangeness from either or both?

    Current Status: In the last 3 years leak is becoming more and more prevalent, but still considered intermittent. Most noticeable when lying down or bending/leaning over. No headaches, minor neck stiffness, really more of an annoyance than a daily hardship except when ALL of my symptoms are presenting. I have made the decision to not pursue this further treatment wise, but would like to stay in touch with others who live daily with this for support, updated research information, and suggestions for slowing this down or stopping it on it's own beyond the basics that I'm already aware of.

    Other info: Work full time, full time hobbies, live with my boyfriend and his 6 year old...unfortunately leading an active life and CSF leaks don't really go together, however, I am thankful and blessed that comparatively I am symptom free. My boyfriend is disabled with chronic pain and I see every day what that can do, and know first hand what living with a hidden disability is like.

  4. #14


    Just diagnosed with a Bony Defect in my skull and a CSF leak. The leak will be plugged using bone tissue from my deviated septum. Planning surgery at Loyola in Chicago. Will have a 4 hour surgery and 2 days in ICU followed by 2 days in a regular room. Any help or advice appreciated. Thanks.

  5. The following user says "thanks"

  6. #15
    Distinguished Community Member Earth Mother 2 Angels's Avatar
    Join Date
    Oct 2006
    Blog Entries


    ((((((LeakerCeliacer)))))) ~

    I'm not a member of this forum, but I just wanted to welcome you to BrainTalk and to tell you that I am sending up a prayer that all will go smoothly with your surgery and that you will have a rapid and complete recovery.

    I hope others will be along soon with advice or suggestions.

    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.

  7. The following user says "thanks"

  8. #16


    Location: Ottawa
    Type of Leak: CSF from Ear
    First Sign of Leak:when shunt was placed in eardrum to relieve what was assumed to be sinus pressure.
    First Diagnosed: Aug 2015
    Brief Summary of Tests to date: Spinal tap with MRI and CT scan to follow fluid from spine to leakage.
    Current Symptomsizziness, occasional vertigo, varying degrees of tinnitus, disgusting pillowcase every morning.
    Current Status:Seeing surgeon in mid Sept to discuss options.
    Other info:Had an brain AVM in 1986, and radiation to remove it with a bout of hydrocephalous in between.

  9. #17


    Hello everyone
    I am still a lurker but don't see many of the old gang(2000) and i am not really on the computer as much. Hello to all!!

  10. #18


    Hi everyone I had a leak following my epidural. I gave birth on august 24th. I had a blood patch and it was way better but right now almost two weeks after I am starting to experience dizziness when I am up and my head does not feel normal. I am looking for info because this scares me. What do you think ?

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