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Thread: Help please

  1. #1

    Default Help please

    I am looking for some help figuring this all out. A little background, i leaked for 6 years before finally figuring this all out and having the correct surgery in 2009. My surgery worked for 2 years. These 2 years were so nice. My headache returned one month ago. It began as thunderclap in nature, as I had severe pain within 5 seconds of being upright. When I had my ct myelogram, I had a dry tap (surprise, surprise). The lady injecting the dye did such a horrible job that she made me bleed. I think that it was a blessing in disguise because I have actually improved since then. I had a blood patch locally last Wednesday. Currently, I think it decreased the headache intensity, but don't thin it resolved. I am looking for some feedback.

    My headache is currently at the base of my skull. It comes on after about 2-3 hours of being up. There is no pain with laying down to sleep at night (after my surgery, I couldn't lay flat for 2 months). I have tinnitus only with laying down and my ears have the sensation of being under water. Weird, it feels like my glands are heavy behind my ears. It feels as if they are trying to fall out. Although the thunderclap is gone since the ct and the blood patch, does it still sound like low pressure? Is it too soon to assume my blood patch didnt work?

    I think that my next step is a repeat surgery. Not ready to jump into that. Should I try to repeat the blood patch? I have a feeling Schievink is going to want to operate. :(

  2. #2

    Default

    Hi Laura -
    I think this all sounds promising. I think the patch could still be working. My son had odd headaches for 3 weeks after his patch that fixed his leak. I also think it may be worth trying another BP. You can get some partial healing from patches too. Good luck! (No BLT!!)
    Jeanne
    Mother of teen w/ lumbar Scheuerman's, L5 spondylolisthesis, repaired 8-month CSF Leak, L3-S1Fusion (2009)
    Robby's Leak Story

  3. #3

    Default Thanks Jeanne ;)

    Thank you for your constructive feedback. Hope u r right!

  4. #4
    Community Member dagaz's Avatar
    Join Date
    Oct 2006
    Location
    Alberta Canada, with a Beatiful view of the Rockies
    Posts
    46

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    Hey Leaky Laura... I hope you remember me... I'm so sorry that your leak came back however it's good to hear from you even though it's not the best circumstances...

    Welcome back... 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!

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