My daughter had a cisternal peritoneal shunt revision early this month.  She has since had a bleed around her cerebellum requiring clot removal and many days in ICU.  Still needs a shunt to handle her pressures.  Does anyone have experience with this?  If this had been an identified risk, not sure we would have gone this route.... (She had previously had 2 LP shunts which failed, and has slit ventricles so there is little room for a shunt there; so choices were limited...)  They are talking about returning to an LP shunt now, but she had a large amount of scar tissue there.

So sorry to hear that your daughter's issues have continued.  I don't recall anyone speaking of a cisternal shunt, so I'm not sure which direction to point you to.  Perhaps the IHRF in Seattle/Portland would be helpful.  Dr. Tanne is an expert in IIH.
I hope that someone is able to decipher all this mess for your daughter and get her well, and soon.

Thank you. I have put a message out to them.  She is continuing to heal, thankfully.  Praying for a shunt that will work well!

I assume that's the cisterna magnum shunt they use at the back of the head. They do mention it as treatment at IHRF, but I don't know anyone that's had one. I would continue to reach out to IHRF and hopefully they'll be able to provide you some guidance and support. I'm really sorry to hear she's still struggling..please keep us posted!

  
Julie