Hi everyone - and especially thank you Shelly for posting this important question. I really hope that we can get as many important questions in here as possible so that we will be able to raise awareness.
When facing an IIH related surgery I would want to know exactly how the procedure is done. I would want a detailed explanation on how it's done - what it is that the neurosurgeon actually does to you.
At each point of the surgery: what can go wrong? And has gone wrong with these type of surgeries in the past? (Doctor's are / and can be often reluctant to give you these facts, but don't give up. You need to hear those stories too as in you have the right to know (before it's too late) what are the possible risks involved.)
Everytime when the doctor admits that there's a risk of something bad happening - make sure that you know how are they planning to fix it? What are the possible surgeries / procedures etc. that you might be facing if things don't go so smoothly? What measures have to be taken in order to make the situation better again?
And always remember that the success prosentages are just that: prosentages. If 98% of the time some surgery is successful, there is always that 2% who end up with less promising results. Make sure that you think with what (aches, pains, epilepsy, vision loss, impaired hearing etc.) you can live with in the future (after knowing the risks) - because there is life after that surgery. Then, when you are aware of the possible outcome, you can make an informed decision about the surgery.