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Newly Joined
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Join Date: Sep 2013
Posts: 1
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Newly Joined
Join Date: Sep 2013
Posts: 1
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Just joined
Just joined a few minutes ago. Having serious issues with my VP shunt (placed at birth due to myelomeningeocele and hydrocephalus.) As soon as my new insurance card comes with my correct information, I WILL be switching neurosurgeons. I have been trying for TWO months to get an appointment to no avail. Last Thursday I ended up having to go to the ER due to a migraine/nausea/disorientation/personality change/pain and redness ON the shunt area complete with a large goose egg. Believe it or not,I likely would have ignored ALL of that, but what freaked me out was that I had a temp of 101.7ºF and I was told, starting from age 5 (I'm now 36). "If your temperature ever reaches 100ºF, GO to the ER because you could have an infection or be going into shunt failure." Obviously being told that at 5 years old stuck with me. From 2005-2007 I had 14 shunt replacements because every month there was an OBVIOUS infection and finally in April of 2007, MRSA was found to be the culprit after it migrated from my diaphragm, up the tubing in my abdomen and into my ventricle in my brain. So.Not.Fun. The VP shunt I had put in most recently (2010) is a programmable one that, WHEN I have an MRI, I have to go right over to the neurosurgeons so they can put this phone like contraption up to my shunt to make sure that the MRI hasn't recalibrated the setting, because THAT can happen and cause issues. GAH! *lol* This most recent time when they admitted me, I got told by the jerk neuro who FINALLY saw me IN the hospital, after the 2 months of refusing to see me in his office only to tell me that it wasn't a shunt issue, but I did have a severe UTI. Did ANYTHING I described sound like a UTI? Okay, maybe the temp and nausea, but the rest of it? Before he arrived, the NICE neuro on call said that CSF can over populate when the body has a fever or is dealing with an infection. SERIOUSLY?! So, what are the new parameters that adults with VP shunts are being told to watch for these days? Sorry my first post was so long, but once I started typing my emotions took over and this past week has NOT been a good one.
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09-23-2013, 05:38 PM
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