For me it was pretty much offered from the beginning because of my paps, pressure, headaches, and cognitive issues. My optho, neuro, and cardiologist were all in agreeance so when they sent me to a neuro-surgeon he went over everything with me. He did tell me weight loss would help but I was finding that difficult. I opted to go ahead with the shunt and told him I would work on my weight loss from there., which I have lost approx 5 lbs per month since the surgery, something I was unable to do before.

There are a lot that are either not given that option for a shunt or elect to hold off in hopes of improvement without it. It is totally up to you if you are given that option. If given the choice again, I would still choose the shunt. I still get headaches but the intense pressure behind my eyes are gone and it also worked to heal the papilledema. Most stop taking Diamox after their shunt is placed but I still continue on it, one because it keeps the pressure down and two, without it I retain water like a dam.

Have you been given the choice for a shunt yet or just thinking about requesting one?

Hope

I gave the meds a year. I lost 35 pounds and had a normal BMI. The headaches became constant. The diamox made me so sick the doctor would not increase the dose anymore. I know I am not cured, but I feel a lot better.

I didn't decide it.
On-call neuros told me that Diamox would fix everything.
Then I saw the Neuro Ophthalmologist, and he he saw it wasn't. And that I needed it, and soon.
My ophthalmologist wanted a VA shunt.
My neurosurgeon decided on VP.

I have had 2 VP shunts since Aug 31 of this year. I am now a not so proud owner of an LP shunt.
VP shunt for me was when the LP's only lasted for a day until my pressure was back and I was throwing up in between and getting them weekly. The Diamox was the maximum dose my dr was willing to give me and I was also taking the maximum of lasix she was willing to give too and they quit working to keep my pressure down.
VP Shunts can be really great, and for me, I wish they would have worked but if you can at all avoid shunting, that would be my suggestion. Shunts come with LOTS of very possible complications and often need adjustments and multiple surgeries. Though that is not the case for everyone, it does happen OFTEN. But they can also really help people. The thing with PTC I have been told is that your body can take longer to heal like with diabetes. When you have parts of your body that dont function like they should, it affects your whole being. Like when you run low on oil in your car, the whole engine can get screwed up. Same with your head, if you have too much spinal fluid your body doesn't know how to react so it malfunctions in other ways...I wish the VP shunts worked. My ventricles happen to be extremely small so mine clogged twice so they switched me to a LP shunt, which I HATE!!!
I hope you and your doctors can come up with an alternative besides shunting, but if not, I hope the VP shunt works for you. You might be interested in knowing that there is a study being done that is finding that PTC can be caused from the veins in your brain clogging and they are putting stints in the veins in the brain and people have had success with that. I am being referred to OHSU to that study and really look forward to it.
I decided on the VP shunt because it was really medically necessary. I had NO quality of life getting LP's weekly. I held out for as long as I could but surrendered. I thought it was the answer to my problem and found out otherwise. I kind of regret getting it because of all the problems I have had with it and if I could go back and have them remove the LP shunt and go back to before I ever had shunts I would, but unfortunately I haven't figured out how to make that darn time machine.
Again, this is only my experience, and I really hope you have a much better. Prayers to you!

Hi. I really didn't have much say at the time I had my VP shunt done.I had been treated for the wrong illness for over a year so a lot of lost time .
I had very bad paps and the feeling was I was going to lose my eye sight soon.

I was very new to this whole IIH businesses, and as far as I knew, I was the only one with it in Ireland at the time. ( I have found 6 more people since then)
I was diagnosed in Sept 08 surgery Nov 08.
I had little choice but to trust my neuro and NS.

If, it was now, I would definitely wait.Find out as much as I could about it all.
For me, unfortunately it has not been a success. Well not a great one at least.
My pressure is down from the high 40s to the mid 30s.
And i still have all the symptoms of high pressure.

I would advise, much thought, really get answers from your drs, and read up as much as you can.

Of course, when it works, it is heaven! And, it does of course work for so many people.
Best of luck! Cath

Did most of you get to choose which one you wanted or were you only offered one? I ask, since I was only offered a programable LP shunt by two different NS's (and my ventricles were on the small side but they did not say they were too small). Are programable LP shunts some how turning into the new thing?!

Hi Mallory. Yes, to a certain degree, I was involved in the decision of which type of shunt.
I, as always! asked a hundred questions and then did my own home work.
There was an element of caution about the lp shunt, as I am not a great patient, luck wise. Its like, if it can go wrong, it will.

What did stun me how ever, was, last year after the failed second VP shunt, the same NS started explaining that a LP shunt might be better!
What ,I said? Do you think I have forgotten all our previous chats?
Oh, says he, and that was the last I heard about shunts!
Cath

Cath, its now confirmed, we're nothing but charts or a condition. You were very nice,wow.

Mrsmosele, what was your max diamox?

I am on my second shunt valve (first had to be replaced) and have had 2 other revisions and I am still not sure if the VP shunt is right for me!

I am not sure it helps all that much, I also had a gastric bypass and have lost 80 lbs since June. I think the weight loss has helped more.

However a VP shunt should be a LAST resort. I was told by more than one DR that if I did not get the shunt within a few weeks I would risk more vision loss on a permanent basis. So I got the shunt and it did save my eyesight-kind of a big deal!

My NS has done a lot of shunts for PTC and does not think an anti-siphon shunt valve is a good idea for PTC. He said he will no longer use the anti-siphon for PTC and that he has had to replace almost all of the anti-siphon shunt valves that he has put in patients with PTC including mine!
Good luck

thank you all for your input
my neuro pretty much told me he feels like he cant do anything more for me he has put me on two different meds and nothing has changed so he is sending me to an Neuro Ophthalmologist i just dont know what the Neuro Ophthalmologist is going to do i dont really want to try another med because i dont have the time to wait months and months to see if its going to work i am a full time nursing student and i cant afford to miss more school then i already have i know the vp shunt isnt going to make it all better i just need something to change i cant deal with this for much longer

I got the VP shunt because I was maxed out on Diamox for a year, lost 40 pounds (healthy BMI), avoided Vitamin A and Hormones as much as possible but was still experiencing daily headaches. Had to get a tap every month and was still opening up in the high 40's - low 50's, but with no sign of Papilldemia. Have had one adjustment on my VP shunt, and so far a definite improvement on quality of life.

Chelscole- how is your vision? Do you have PAPs?


My NS is totally against LP shunts for the treatment of PTC. He said almost everyone he has put in has had to be removed a few years later and have a VP shunt put in.

He also said that he will no longer use the antisiphon shunt valve for people with PTC- he said it works well for hydrocephalus, but not PTC.

Ask the neuro Opth. what they think about Optic nerve Sheath Fenestration surgery. I had it done on my left eye back in Aug 2010. At the time my paps were getting bad and I had lost my vision completely in my left eye twice. Even though the blindness was temporary and did not last more than 5 min, it scared the crap out of me!

The ONSF surgery served it purpose and saved my vision, unfortunately it healed over after 3 months and then they decided it was shunt time.

Really only get a shunt if you have to. Some people do great with them and some need lots of revisions.

My shunt was put in in Jan, revision in March, shunt valve and ventricle catheter replaced in Nov and another revision in December.

I am not trying to scare you, just point out that a shunt is a big commitment and you should only get one if all other avenues are exhausted.

Also there are TONS of people that get a VP shunt and never have problems with it. But you may not hear from them on here because they are out living their lives and not spending an hour a day on this site like me!

....or like me too EE, Charlesgo I have an LP shunt and I am not in love with mine. Thinking I might beg to have it switched to a VP.

To add a bit more on LP shunts. My NS said the same as EE. LP shunts were a short term fix with them being replaced by a VP shunt with in 3-5 years.
That, and all the stories I had heard about the sciatic nerve problems in the leg made my mind up for me. Cath

my vision in the last month or so has started to change which is pretty scary and if paps is Papilldemia yes i have that as well