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Thread: Intracranial Hypertension Post Leak Repair

  1. #1

    Default Intracranial Hypertension Post Leak Repair

    Hi!

    I'm new to the forum...a longtime lurker. I have had a cribriform plate CSF leak for almost nine years. I was only diagnosed last year, though.

    I wanted to find out how common it is to develop Intracranial Hypertension POST leak repair....?

    I did find one paper by Mokri at Mayo that discusses four patients:
    http://www.mayoclinicproceedings.com...7/11/1241.refs but there isn't good followup--the patients seem to disappear into the woodwork.

    What have your doctors told you about the incidence/etiology of IH following longstanding leak repair?

    When does it usually occur...immediately, or several months later (as in the Mokri paper)?

    How long does it last? (Is it transient?)

    Have any of you with IH used alternate treatments to Diamox? What types of treatments? (Topomax, shunt) What was your experience?

    Have any of you had shunts placed to prevent IH and then had them removed at a later date when your pressures normalized?



    Thank you for any thoughts or ideas you are willing to share,

    Darcey

  2. #2
    Community Member LauraL840's Avatar
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    Default

    There's quite a bit of research available over here: http://www.csfleak.org
    From my understanding, it's not at all uncommon to develop rebound high pressure.
    Laura

    Better is one day in your courts than a thousand elsewhere
    ...

  3. #3

    Default

    I had a craniotomy to repair the leak in my ear in 2007. After they fixed it, I developed terrible headaches. They believed these were high pressure headaches. I tried topomax and diamox. The topomax for me, had a lot of bad side effects. I was also on high doses of diamox. I'm now on 500 mg a day of diamox and use fioricet when needed for the headaches. The doctors think the headaches are migraines and do not have anything to do with what they fixed...I also starting leaking fluid out my nose about a year after they fixed the leak...the doctor thinks this is spinal fluid. Since I can manage the headaches, they will not do anything further.

  4. #4

    Default

    I'm a bit late in responding but I had a high volume blood patch in January 2011. I was experiencing intense intracranial hypertension post-blood patch, which I expected since I experienced this after my first blood patch (conducted by another doctor at another hospital). Dr. Schievink prescribed Diamox as well as Norco for the pain. I started with Diamox 500 mg 2x/day for about 1 week, then I moved to 1x/day after I informed Dr. Schievink of some unpleasant side effects, mainly shortness of breath. I continued to take it 1x/day for about 1 month. Then when I revisited Dr. S for a follow-up, he lowered my rx to 250mg 1x/day for about 3 weeks more until I was completely off the medication.

    I no longer have severe high pressure headaches, but I do still experience high pressure symptoms every now and again (e.g., stiffness, tinnitus). I've learned to watch my posture and make sure i'm not sitting for long periods of time or sleeping on uneven surfaces to avoid the pressure related symptoms as much as possible. When I do experience symptoms, they are more characteristic of high pressure than low pressure.

  5. #5

    Default

    SpontaneousLeaker,
    I'm new to this site and if i may ask, How do you know the difference between high or low pressure? What symptoms are which? And how does your posture and sitting for long periods of time affect this?

  6. #6

    Default

    There are many past discussions of this, especially because the headaches seem to often continue after surgery and blood patches, sometimes they're very different and sometimes not. If you type :

    site://braintalkcommunities.org/ csf leak difference between high low pressure

    into google search, you'll find many different answers.

    P.

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