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Thread: Newbie here .... kind of.

  1. #1

    Default Newbie here .... kind of.

    I just found this site recently, but this is my first posting. I'm a 18 month leaker just recently diagnosed (err correctly diagnosed anyway). Seems like a lot of good information here, which is how I found this place! I need to figure out what to do next and I just don't know where to get reliable information anymore! I mean my doctor(s's) have kinda sent me from one place to another and aren't sure what to do with me. I feel like a modern day lepper, I am alone?
    I have insomnia, I mean a headache, I mean my headache gives me insomnia and I should go now before I stop making any sense!
    Hope to meet others soon!
    Justin P.

  2. #2


    What have they done for you so far? How where u diagnosed? Unfortunately, there is a lot of experience here.

  3. #3
    Community Member dagaz's Avatar
    Join Date
    Oct 2006
    Alberta Canada, with a Beatiful view of the Rockies


    Hi and welcome... sorry that you find yourself here. I've been leaking since 1993 and have had 16 Brain Surgeries. I don't sleep either however I have a host of medical issues and when I am finally laying down at the end of the day it is the ONLY time that my pain feels less well painful... I thought it was like that for all of us...hmmmm
    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!

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