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Thread: Cisternogram & Myelogram- Any success finding your leak with these tests?

  1. #21
    Community Member
    Join Date
    Mar 2011
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    UK/Spain
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    You are so right it would be great to hear from more healed and sealed people, their stories, how they got fixed, and how their lives have been transformed!
    so you have a diagnosed leak but an unfixable one? or im guessing they cant fix what they cant find...my biggest fear.
    I think Ill give up this resting nonsense very quickly, I need to get out of this place before i go bonkers. Watching a dated spanish television soap right now, what a load of rubbish lol. Mind u, I am feeling more 'up' today, probably because i have spent the whole day 'down'
    lets hope we hear from more people, all these forums are great either way for advice and support

  2. #22

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    They have not be able to find my leak...yet. It sounds like one of your cisternograms showed a leak so that is very encouraging. After all, they need to identify the spot usually before they can fix it. I have an appointment with my neurologist tomorrow to discuss another blood patch while I wait for an appointment with Dr. S in California.

    Thank goodness for my Ipad and Iphone. I am able to do so much with them while I am horizontal. Wishing you pain-free moments today.

  3. #23
    Community Member
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    Mar 2011
    Location
    UK/Spain
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    43

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    Ive got an iphone too but to be honest the writing is too small for me to use come the end of the day, better in the morning tho. My vision deteriorates during the day. Would love an ipad tho but too expensive for me. got a laptop tho so not so bad and prop it up with cushions so its almost upside down.
    How long do you think you will have to wait to see Dr S? is it because he has a long waiting list or what? does your neuro do one patch at a time or multiple patches? Do you live a long way away from Dr S? Im not very good on geography of usa lol should read up on it more.
    We were thinking of perhaps coming to the states and renting a auto caravan and travelling around, getting to see things, and if we can get an insurance plan that would cover that 'holiday' i could get sick while there and go to see which ever doctor I can (if I dont get the referral that is and if we sell our house)
    Not sure how much all that would cost though lol but at least I could lay down while being driven around

  4. #24

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    Since I don't have a leak position identified, they do one blind patch at a time in the lumbar area. I heard from Dr. S office today. He is still reviewing my imaging so I'm not sure how long the process will take. I am sure he is high demand. I am on the opposite side of the country so I am looking at a 5+ hour flight. Not sure how I will manage that! One step at a time...

  5. #25

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    Lumbarlady are you still following this post???

  6. #26

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    I am currently going through a very similar situation. I had a myelogram today and it didn't show a leak. The doctor is ready to send me home tomorrow on rest and steroids. He is telling me that I have aspetic meningitis and it should take a few more weeks to resolve itself. My CSF tests were not positive for meningitis. Have you been told that you have meningitis because they aren't finding the leak?? Anyone ever heard of this resolving itself??

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