April, I can understand your feeling's right now. I am not familisar with your story. Do you have PAP's? Have you had any LP's? I guess you have since you said yor neuro is a pro at them. I would talk to your NS about getting and ICP monitoring done first before the shunt, unless your vision is in danger from PAP's. Hang on....we will be here to help you. Paula

April, I can SO relate to your story and I feel your pain! I know you are scared and frustrated right now. Just do your best to go into the ns office prepared and informed and ready to ask any questions you may possibly have. Maybe write them down since you will probably be nervous at the time of the appointment. Unfortunately, you, as many of us do, come to this point in our disease where surgery is the best option. My only advice would be to ask the ns about the type of shunt he likes to use and what he thinks the chances are of your ventricles collapsing and if so, what he would do if they did. Other than that, good luck and I will keep you in my prayers!

@sufferer yes i have paps and always have that is what led to my diagnosis, my first lp my op was 38 that was back in october of last year and my last on about 5 months ago was also 38. im just completely scared, i didnt think i was going down this path but i guess i should have realized with the meds not working and the headaches being everyday that somethings gotta give.

April, please don't be scared or upset, we are all here for you, you can always call the guy back to demand an LP. Talk to him about needing immediate relief. I am sorry your going through this. I cannot give any advice on a shunt other than it saved my good friends life. Maybe it's time to consider all options and what those outcomes could be. Look at all our DS friends that have one, what are their failure/revision rates compared to what your going through now. Is a surgical relief/solution worth the risk of a possible surgical failure? Hang in there, it will be ok no matter what route you choose. I like Paula's advice about ICP monitoring, and your eyes.

April,

What made the nuero send you to a surgeon? Did he have the report from an eye exam?

Good luck. I will be praying for you.

Angela

April Hang in there and take time to breathe. Then you gather all the information you need to make an informed decision. One question I have always asked my Dr.'s is "IF THIS WAS YOUR WIFE, MOTHER, OR DAUGHTER WHAT AND HOW WOULD YOU TREAT THEM'. always remember if you put it on the home front for them they tend to stop and think before firing nonsense at you.
Melinda

Oh April, calm down! Come back from that ledge.
I know how scared you are, you should be.That is a correct response to this next step in your future, but reign it in before you self implode. I for one, would really miss you!

Ok, so, they have decided this is the next ,logic step for you.Come on board now, and try to see the pluses to this, of which, there are many.

Your pressure is ridiculously high, has been for some time. This is causing damage that you cant see. And, your eyes? What about the mind numbing pain? How would you like to say good bye to all that?

There are hundreds if not thousands of people around the world who have shunts that have made their lives better, almost normal.
Why, cant you be one of them!

You, are so young, and have since the day you joined us here, fought the good fight. Don't stop now. Life, is waiting to be lived.

You need a plan of action now. You need to know as much as you can about shunts, LP + VP.
You need a list of questions for the NS.
And, don't forget, you are still in charge. You, can,say no .
But lets hear what the NS has to say first, eh?

Alto I am a poor example, I will never for get coming round after the surgery for my VP shunt.. No Pain! No eye pain and I could see clearly again. No hd! I thought I had died and gone to heaven.

It lasted for only 10 days, but I was willing to do it again pretty soon after. I have a very complicated form of IIh and am not responding to anything. But I can see no good reason why you would not come out feeling like that.

Bottom line April, it will save your sight. This much I do know is true.
But, for now, breathe. Start thinking of questions you would like answered.
I will do all I can to help.I have kept all my notes and questions from all that time so I can look it up if you like?
Lets take one step at a time honey, ok? Cath.

Wow you all are so amazing, how is it the words that you type and i read on this computer screen can make me feel so much better. I did set up my appointment with the neurosurgen and its October 11th....yeah a long way out, a long time to wait and think but i guess i can gather questions in the mean time. Thank you all for being so supportive! Love you all. Have a pain free day!

Also forgot to add that i do have an appoinment with a new opthamologist on the 30th, i actually havent had a professional look into my eyes for a while so we shall see. @angela the neurologist is doing this due to none of the meds working. I have been on 3000mg diamox, 100mg topamax and nothing is working.

Oh April, you poor thing! I know how scary this is to take in all at once. Its enough to just have PTC let alone dealing with the thought of invasive surgery.
(I am 17 and am going to talk to a NS next week about a shunt.)
Just remember to take it one step at a time, gather all your questions onto a sheet of paper (like others have suggested), this helps so that once he answers the questions and the appointment is over you have notes to look back on. You can also take a recorder to record everything or you can take someone with you so that, while you are still in shock, someone else can refresh your memory about the appointment( I found this to be the most comforting as it was so much ot take in all at once). Never forget to look at the up sides to the scary situations like Cath said- it always makes them seem less scary. I hope this NS is wonderful!! Its nice that you will have a bit of time to process and trust me, in time you will feel a little more comfident about the appointment. Don't feel that if you don't like him/her that you have to stay with them, there are plenty that are far better- trust me I know. It is important to feel comfortable around your NS and to feel like he cares and will listen to you, as well as fix problems if problems were to come up. I will be praying for you! Let us know if you have any other questions- such as if you are not sure what kinds of questions to ask and what not. Stay hopeful, we are all here for you :)
Mallory

My 8 year old had a VP shunt placed 4 weeks ago. His PAPS didn't go away for 16 months and his pressure was 43.5 even on Lasix and Diamox. So after ONSF surgery they did the shunt. He recovered very quickly and feels much better off medications. He does have a headache but it is half of what it used to be. I doctors will guide you in the right direction! I do have to explain to other parents that he really didn't get attacked by a shark (how explains his scar). Best of luck.

hang in there. Shunts totally suck, but if it is necessary what can you do. We are here for you.