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View Diary: My world grows darker (114 comments)

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  •  You know where I'm at then (5+ / 0-)
    Recommended by:
    zaka1, cpresley, ColoTim, SoCalSal, raincrow

    They've had  me on as much as 2000 mg of the diamox, my first "lumbar puncture" registered a pressure of 48.   Subsequent ones after my LP shunt implant have been lower, but still in the 30s.  They discussed possibly replacing the LP shunt with a VP shunt, but the fact of the very limited effect of shunt at all made it seem like it would hardly make a difference.  My biggest problem is a blood clot in a sinus that the spinal fluid normally uses to exit the brain.  The clot essentially acts as a dam for the fluid, leading to the pressure buildup as the fluid seeks alternate routes out.    They tried to break down the clot, but the brain bleeding I have gets exacerbated, so there's a definite limit to how intensely they can push the anti-clotting factors.

    Ever get the feeling you've been cheated?

    by ActivistGuy on Tue Feb 05, 2013 at 10:39:01 AM PST

    [ Parent ]

    •  Wow, (5+ / 0-)

      I didn't know about the blood clot, but I kinda understand where your at with the drainage problem and the difficulty with the VP shunt.  The shunts aren't a perfect science.  I understand the routing of fluid problem and the last thing you want is a bleed in the brain.  I don't think many people realize that the sinuses are actually part of your brain and when there is pressure there, there is pressure in your brain.  

      The problem I have with the VP shunt is it is necessary to drain the fluid, (I had the back of my skull removed due to a previous surgery and a fluid flow problem due to a birth defect), but then it causes additional problems since I developed slit ventricle syndrome after my shunting.  But, the damage to the back of the brain is where my fluid damns up and causes problems.  

      Pressures in the 30s are high.  My opening pressures were in the 30s as well and that was while I was taking the Diamox too.  I hate Diamox, it is a nasty medication, your always dry on the stuff.  When they did the spinal taps and removed the fluid I could actually feel the pressure being taken off as they drained me, it was like lifting a veil.  I could actually stand and walk for a least 24 hours until the fluid built back up again.

      I'm sure even to try and surgerically remove the clot is dangerous because it could cause a bleed in the brain.  I have known people with the lumbar shunts that have gone to the VP shunts and had better results.  But anything with the brain is trickey because sometimes it seems like the brain is its own separate entity and when you have a fluid problem it causes so many things to not work right.  I would imagine that the VP shunt could be very dangerous since they go through the right side of the brain with a catheter and with a blood clot that could probably put you at risk of bleeding.  Gosh, I'm so sorry about this.

      If I can do anything please let me know, even if it is just being supportive.  I went through some of the same stuff of losing my independence to some degree and all the while I had worked most of my life just so I never had to depend on anyone.  Well, life just didn't work out according to my plan.  By the way we are the same age and I can understand your feelings.  Please keep us posted I would truly like to know how you are doing.

      "During times of universal deceit, telling the truth becomes a revolution­ary act. " George Orwell

      by zaka1 on Tue Feb 05, 2013 at 12:10:27 PM PST

      [ Parent ]

    •  Well, that answers my shunt question. Damn. (2+ / 0-)
      Recommended by:
      ActivistGuy, zaka1

      {{{{{{{AG}}}}}}}

      YES WE DID -- AGAIN. FOUR MORE YEARS.

      by raincrow on Tue Feb 05, 2013 at 05:56:05 PM PST

      [ Parent ]

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