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View Diary: My world grows darker (114 comments)

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  •  How long have you had your shunt? (1+ / 0-)
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    just out of curiosity. A coworker may be headed in that direction, same diagnosis (but so far his optic nerves are holding steady)


    by raincrow on Tue Feb 05, 2013 at 05:55:11 PM PST

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    •  I'm actually on my (1+ / 0-)
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      second shunt, the first one lasted only six months and then failed.  So, I've had this shunt for about four and a half years.

      With the VP shunts you have to make sure you stay hydrated and eat a high fiber diet because the drainage tubing is free floating in the peritoneum (walls of the abdominal cavity) and something simple like contispation can prevent the tubing from draining properly and thus giving you a pressure migraine.  I still get pressure migraines because the shunt isn't 100%, the pressure gets so bad that my teeth actually shift closer together.  There are times when I can't even get floss between my teeth because they are pushed together so tightly.  I had a night guard made prior to my first shunting and once the first shunt was put in my teeth had shifted so much that the night guard actually was not wide enough to fit over my teeth any longer.  I had such bad TMJ from the pressure my jaw will come out of the socket at times and click until I can pop it back into place.  Fluid problems are such a pain, but the shunts do help.  

      My best to your co-worker.  Thank goodness his vision is still holding.  It is very scary to lose your vision or to have it altered by pressure.  To this day I still have like double vision in my left eye, if I look at my digital alarm clock without my glasses it looks like the numbers are doubled and stacked on top of each other.  

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

      by zaka1 on Tue Feb 05, 2013 at 07:12:55 PM PST

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      •  Awful. {{{{{{{zaka1}}}}}}} (1+ / 0-)
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        He is having very disruptive visual anomalies, but so far no changes to optic nerve, peripheral vision still all there, etc.

        Different people have pressure problems in different parts of their brain -- pressure that deforms the pituitary and damages the optic nerve, pressure somewhere near one or both parietal lobes (iirc), and one young man whose dad is an avid IH researcher has a gradient of pressures that affect his prefrontal cortex. Mysteries within mysteries.

        Take good care of yourself!!


        by raincrow on Tue Feb 05, 2013 at 09:47:38 PM PST

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        •  I will, and please take (1+ / 0-)
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          care of yourself as well and your co-worker.  I keep meeting people who are having problems with excess fluid.  And your right, the damage caused by the fluid depends on where it is putting excess pressure in or on the brain.  I'm glad to hear that your co-worker's vision is still intact.  I know I lost my depth perception for a while.  When I had my eyes examined with those pictures of the colored dots, I could not read or see what the numbers were that were suppose to stand out.  And I used to drive one of my co-workers nuts when I drove us to work every morning because my depth perception was so bad I couldn't tell how close I was to other cars as I drove down the narrows streets in Chicago.  LOL, I think she sometimes thought taking the CTA was a little easier on her heart than riding with me.

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

          by zaka1 on Wed Feb 06, 2013 at 12:57:34 AM PST

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