All Journal Entries Journals

2016.  A bumpy start.

Feb 03, 2016 - 1 comments

So .... a symptoms post for my future reference.  My LP shunt has been deemed NOT WORKING.  I am scheduled for a revision/replacement on the 17th of this month.  My headaches never improved after the last decompression (11-18-15) and my nausea never got better.  I tried more steroids ... but an LP showed my pressure was elevated ...  and I probably knew that it wasn't working.  I was just trying to ignore it.  Big signs for me:


extreme! nausea.

pulsitile tinnitus (ringing in my ears in sync with my pulse ... sounds very much like an unbalanced ceiling fan)

bladder retention like CRAZY! which makes me wonder if my cervical syrinx has re-filled due to this high pressure? that is one thing that got rapidly better after the second decompression.  For probably a decade I've had what I would call a "shy bladder" ...  Suddenly I could empty my bladder without the struggle.  The struggle is BACK and exasperated because I'm spending most of my time a little dehydrated.

So my LP shunt.  The first one didn't even last a year before it broke ... the end in my back dislodged and the catheter was seen floating in my head.  it was replaced and due to abdominal pain .. revised a billion times.  That was in september, when the second shunt went in, I think? so it lasted less than 3 months.  My NS thinks the decompression surgery clogged the shunt this time /// but I'm starting to consider giving up on the LP shunt and getting a VPL shunt (ventricle to pleural cavity)  before the last revision my NS mentioned my lungs as an option ... I don't think my heart is on the table because I am 96% pacemaker dependent and the catheter would have to share my right atrium with a pacing lead.   There is not a lot of information about VPL shunts but maybe it's time to give up on my abdomen.

Post a Comment
16744917 tn?1451266839
by gjjl, Feb 04, 2016
So sorry lady you have been through so much. Thank you for posting this, I truly think this is a smart idea. I should do keep a journal of my symptoms. Sending prayers  :)

Post a Comment