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Thread: Very Bad week-end...

  1. #1
    Community Member dagaz's Avatar
    Join Date
    Oct 2006
    Alberta Canada, with a Beatiful view of the Rockies

    Question Very Bad week-end...

    I woke up Monday morning with the feeling like a head ache was on the verge. My husband and I left his sister's place for a 5 hour trip home by the time I was in our vehicle the headache was in full force. I tried to lay as flat as possible but with all of our stuff in the back seat along with dogs I couldn't lay my seat back. About 2 hours into the trip we stopped at a gas station and I got out of the vehicle and immediately vomited. I don't know if it was from standing upright or what.
    I have hydrocephalus and wasn't sure if it was a shunt failure or not. I just had a CT on my shunt and it showed normal ventricles. I can feel that my Headache is ready to pounce at any time. Obviously I always have some what of a head ache but this weekend really scared me.
    After speaking with my GP and told him about Dr. Scheivink he said my current neuro surgeon would have to agree for medical to pay for me to go to the states. I have had 16 brain surgeries to try and repair the leaks and have been leaking 18 years now... Any input would be greatly appreciated.

    Connie (Dagaz)
    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!

  2. #2
    Community Member
    Join Date
    Mar 2011


    I too am fighting to get referral to see Dr Gray or Dr Schievink. I need to go through the Execeptional Treatments Committee of the National Health Service in the UK:
    Also I needed a consultant to refer. I finally got my neuro on board after pointing out to him the many things that are needed to get a diagnosis and treatment and even though they are available, he will not carry them out. I am lucky to have my GP on board and he is amazing. I have been seen for a year at Londons National hospital (top dog apparrently) and discharged with 'migraines'.
    I really feel for you Connie, I am only 4 years on this path, you have had to travel such a long way. Good luck

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