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Old 04-29-2016, 04:58 PM   #1
Nursenicole103180
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Default Feeling miserable

I had my vp shunt placed Nov 25 2015 due to IIH and I feel awful still. I've had testing and everything shows fine. Shunt series perfect, ctscan fine. Which of course is good news but it's frustrating being in pain 24/7. I would rather deal with the iih headaches daily then with this shunt. My pressures are fine, yet I feel like my head could pop. My neck is so sore all the time, no signs of infection per the ER last weekends. I have an appointment with my neurosurgeon in a few weeks and im requesting it be tied off. I know they can't remove the catheter that goes from the shunt to the ventricle, but has anyone heard of them removing the catheter from the shunt to the abdomen? I'm not really sure what "tying it off" entails so if anyone could enlighten me with details that would be great. Can they remove the entire thing except the catheter that goes into my ventricle? Like I said I'm having a very difficult time with this and my anxiety is making is so much worse to the point I'm barely able to make it through the day. Please. Does anyone have advice or info? I'm so desperate.

Thank you
Nicole
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Old 04-29-2016, 06:49 PM   #2
Hopeless
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Hi Nurse Nicole,

I hope someone comes along quickly to respond to your post. I am of no help, but sure wish you better days.
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Old 04-30-2016, 09:58 AM   #3
pogo
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The surgeon will probably not want to make the shunt stop working as the first response to your unhappiness, pushing for icp monitoring is more feasible and could identify the issue. Tieing off a shunt essentially blocks the flow. They don't remove anything as more mucking about increases the chance of infection.
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Old 04-30-2016, 07:51 PM   #4
Nursenicole103180
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What is icp monitoring and how do they do that? It's not that I'm just unhappy, it's effecting my life to the point of being practically non-functioning
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Old 04-30-2016, 11:34 PM   #5
pogo
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Here's one overview. Hard to suggest something as people come from different backgrounds. You said your pressure was ok so they probably did one quick measure (either via shunt tap or lumbar puncture). But pressures change during the day. It could be your shunt system is at odds with how your pressures change.

http://emedicine.medscape.com/articl...50-overview#a1

Suggesting the surgeon remove a shunt that was recently deemed necessary is unlikely to sway their thinking unless they have proof that something is wrong. People could consider it malpractice. Is there someone who can go along with you to your appt to advocate for you if need be but who listens well otherwise?

Last edited by pogo; 04-30-2016 at 11:35 PM. Reason: Extraneous word removed, stupid autocorrect
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Old 05-10-2016, 10:41 AM   #6
jasn03w
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From what my surgeon told me and like Pogo said, your ICP's are different when you're laying vs standing. When you're sleeping at night your pressure is around 5cm h2o and around -10cm h2o when standing. Depend on the shunt you have, it's most likely not able to mimic your physiological ICP's. If your valve is set too high, which it probably is, your going to be underdraining at night and waking up with symptoms.


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