Other past 3 month I have had 5 VP shunt revisions because it kept getting plugged up. All my cultures came up negative for infection which didn't make sense for my NS, so I decided to take out the whole shunt and put in an External Ventricular Drain to play with different pressure settings and see if I could go without a shunt. It became very obvious, very fast that I need a shunt. The pressure made my eyes goof up. Then he decided that I must have an infection the is living ON the shunt and that is why all my cultures came back negative. So he treated me with vanco 2x day while in the ICU with my EVD. A week later he put in a whole new shunt, new type (programmable this time), on the other side of my brain/body. Left the hospital shortly after that.

Within days I was having intense neck and abdominal pain on the side of my new shunt. Scans showed that my distal tubing was looped under my diaphragm which is why it hurts the most when I inhale. NS said that it should settle down and work its' way to the middle of my body, just like the old shunt. But in the meantime, my quality of life sucks. There are very few days that I don't have extreme discomfort from either my side, my neck, my head incisions (of which I had 6 different head incisions to remove the old and replace the new) All of the incisions are completely healed over, but the skin is so sensitive and sometimes it feels burning or pangs from below the surface of the skin. Most of the time the pain is not "excruciating", it is livable, but it generally gets worse throughout the day. and the worst part is, it makes me crabby with everyone and certainly has nothing to do with them. After all these surgeries and "solutions" I am tired of feel so subpar all the time, feeling like i literally can't function at a normal standard in work and other areas of my life. I think the only solution i've been given is to wait for the shunt to make itself comfortable, and I don't even know what I'm looking for.

Has anyone else had THIS long of a recovery after either an EVD or a brand new shunt (either diff. type, diff location)? Is is abnormal for me to be still feeling crappy 2 months after the removal of the EVD and placement of the new programmable shunt? Or do I need to just have patience?

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