[Lilsoljah]

Hey everyone. I'm not really sure what to say I have read many posts regarding Vp shunts and Va shunts. But I'm seeking people who have had issues with them before to help me out with how they over come the pain and became more comfortable. My dad has had a head ache for comming up 3 years now going now more than 6 weeks after a surgery before we are back to square one. He has something called intercaranial hypertension. I think his body ptoduces too much csf. For the last year he has had more than 12 surgeries for either unblocking the tubing or replacement of his shunt before they decided to put in a Lp shunt.. which also packeted a sad so just last week he ended up getting a Va shunt out in. However now he has really bad chest pain and the hospital think he could have an infection or blood clots.. Can anyone help with some information or their experiences with this? I'm sick of hearing 'there's nothing else we can do'

[pogo]

so I think you are referring to idiopathic intracranial hypertension (old term was psuedotumor cerebri). Our child has congenital hydrocephalus but has a lot of high pressure issues. getting outside the comfort zone of the exceptional surgeon which is very unsettling.

Make sure your dad is seen at a super well regarded facility, go through US News and World Report hospital rankings in neurosurgery & neurology or if there's a IIH patient focused organization then contact them about who to see within a reasonable travel range.

you don't say if your dad had programmable valves or if he really had over draining, so it's a bit hard to be more specific... but... if over draining, there are a few things they could have done with programmable valves and fixed valves in series, potential is there for a cmvp shunt system if it's a pressure problem like fringe numbers of hydrocephalus patients get (that acts a lot like iih from all I can tell). The downside of LP valve systems is potential for chiari but less so with a programmable, pretty common approach with adults last I knew. the big downside for va shunts is infection, those are starting to be really uncommon considering but there are always some unique situations where it is completely appropriate. still, the surgeon suggesting such better be a someone who knows all the ins and outs.

have they ever done icp monitoring? are you at a well respected facility?

[Merl1n]

Originally Posted by Lilsoljah

Hey everyone. I'm not really sure what to say I have read many posts regarding Vp shunts and Va shunts. But I'm seeking people who have had issues with them before to help me out with how they over come the pain and became more comfortable. My dad has had a head ache for comming up 3 years now going now more than 6 weeks after a surgery before we are back to square one. He has something called intercaranial hypertension. I think his body ptoduces too much csf. For the last year he has had more than 12 surgeries for either unblocking the tubing or replacement of his shunt before they decided to put in a Lp shunt.. which also packeted a sad so just last week he ended up getting a Va shunt out in. However now he has really bad chest pain and the hospital think he could have an infection or blood clots.. Can anyone help with some information or their experiences with this? I'm sick of hearing 'there's nothing else we can do'

Hey Lilsoljah,
I haven't been around for a while but thought I'd drop by and I read your post. Your line of 'there's nothing else we can do' is all too common and a position, I am sorry to say, I am in. I have a VP shunt, my first fractured and was replaced, the positioning of the 2nd was not correct and was again replaced. This replacement had a non magnetic valve which became blocked and then failed, the valve was replaced with a magnetic valve. And now I'm being told "...we could operate again, but there's no guarantee we can fix, in fact we could make things worse..." so "...there's nothing else we can do...". I have been told by the medicos they cant be removing the extra tubing within the brain as his would leave a void which can then fill with blood and lead to a risk of stroke. The dr's make out that they have ALL the answers, but they don't and when all of their avenues have been exhausted we are left to deal with it all on our own. I'm sorry to say I do not have any great answers for you but strongly recommend you get a 2nd opinion from someone who is not associated with the hospital nor dr's that you have been seeing. The neuro community is not huge and getting a truly independent opinion can be difficult and you may need to travel interstate to obtain one. I believe Pogo's is correct and recommend you follow thru with his advice too.
Best of luck with it all
Merl1n