advertisement
Reply
 
Thread Tools Display Modes
Old 04-29-2016, 04:58 PM #1
Nursenicole103180 Nursenicole103180 is offline
Junior Member
 
Join Date: Dec 2015
Posts: 11
8 yr Member
Nursenicole103180 Nursenicole103180 is offline
Junior Member
 
Join Date: Dec 2015
Posts: 11
8 yr Member
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
Nursenicole103180 is offline   Reply With QuoteReply With Quote

advertisement
Old 04-29-2016, 06:49 PM #2
Hopeless Hopeless is offline
Senior Member
 
Join Date: Jun 2013
Location: USA
Posts: 1,232
10 yr Member
Hopeless Hopeless is offline
Senior Member
 
Join Date: Jun 2013
Location: USA
Posts: 1,232
10 yr Member
Default

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.
Hopeless is offline   Reply With QuoteReply With Quote
Old 04-30-2016, 09:58 AM #3
pogo pogo is offline
Member
 
Join Date: Jan 2014
Posts: 124
10 yr Member
pogo pogo is offline
Member
 
Join Date: Jan 2014
Posts: 124
10 yr Member
Default

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.
pogo is offline   Reply With QuoteReply With Quote
Old 04-30-2016, 07:51 PM #4
Nursenicole103180 Nursenicole103180 is offline
Junior Member
 
Join Date: Dec 2015
Posts: 11
8 yr Member
Nursenicole103180 Nursenicole103180 is offline
Junior Member
 
Join Date: Dec 2015
Posts: 11
8 yr Member
Default

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
Nursenicole103180 is offline   Reply With QuoteReply With Quote
Old 04-30-2016, 11:34 PM #5
pogo pogo is offline
Member
 
Join Date: Jan 2014
Posts: 124
10 yr Member
pogo pogo is offline
Member
 
Join Date: Jan 2014
Posts: 124
10 yr Member
Default

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
pogo is offline   Reply With QuoteReply With Quote
Old 05-10-2016, 10:41 AM #6
jasn03w jasn03w is offline
Newly Joined
 
Join Date: Aug 2015
Posts: 4
8 yr Member
jasn03w jasn03w is offline
Newly Joined
 
Join Date: Aug 2015
Posts: 4
8 yr Member
Default

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.


Sent from my iPhone using Tapatalk
jasn03w is offline   Reply With QuoteReply With Quote
Reply

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off


Similar Threads
Thread Thread Starter Forum Replies Last Post
Miserable.. Pcs or no? Taliesin Traumatic Brain Injury and Post Concussion Syndrome 3 02-19-2016 08:55 AM
concussed and feeling miserable! PaperShoes Traumatic Brain Injury and Post Concussion Syndrome 7 06-11-2012 08:47 AM
I am miserable. Yellowfever Bipolar Disorder 13 04-28-2010 03:48 PM
Very miserable..:( Summertime Reflex Sympathetic Dystrophy (RSD and CRPS) 10 02-24-2009 01:32 PM
feeling miserable today amit Peripheral Neuropathy 7 12-10-2008 04:08 PM


All times are GMT -5. The time now is 04:20 AM.

Powered by vBulletin • Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2024 DragonByte Technologies Ltd.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

The material on this site is for informational purposes only,
and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider.


Always consult your doctor before trying anything you read here.