Just curious .. what happens when you take pain meds? -- totally useless? or do they help? . Not that it's any quality of life.. But I wonder if this is all they can do for you.. if Neuro's can just help you manage your pain, and get you some kind of good pain killer..
My only concern aside from pain would be .. what is the pressure doing to your vision?

I have the same problem. My (soon to be) ex-neurosurgeon basically told me that my case was too complicated for him, after lowering my shunt as much as we could safely, and me being diagnosed with slit ventricle syndrome. My answer was to go to a bigger hospital, where I am offered a whole team of neurosurgeons and neurologists. Now, instead of one brain, I have a few that can brainstorm about what to do next.
This is a very tough road we face, and I hope things get better for all of us soon.
I'm wondering the same thing Nurse is. How do you do with pain meds? I know a lot of them only take the edge off for me, but even that little bit can be a great help.

I'm sorry they can't give you any real answers. Unfortunately because of the rarity of our disease not everyone knows how to treat it effectively. Have they considered a different type of LP valve? Maybe there is a different one that would work better for you. I hope you find the answers you need for relief!

When I talked to the Neuro at the appt. yesterday we went over the options of medications and I'm on everthing I can and should be to relieve the pain and ease the tension and anxiety.

I take 2mg of Dilaudid every 4 hours,this is short lived my relief is only about 1/2 hour,it does ease the tension depending on how high the pressure is.Pressure goes up and down all day.I have been on this since surgery Sept.22,2010 so this dose is not adequate anylonger.

I also take Depakote 250 mgs 3 x a day,Fioricet or ( Butal-ASA-CAFF ) every 4 hrs,Xanax 1 mg prescribed 2 x a day but I only take it as needed and Robaxin ( a muscle relaxer ) to help up to 3 x a day.finally Ondansetron ODT 8mgs for Nausea.

If I time it right and I try to at my 3 x's a day when I take the Depakote I take all the meds together to get at least 1 hr relief.

I'm not sure what the sergeon thinks he knows how long I've been on this dose but seems like he's not willing to up the dose to provide alittle more relief on the pain med... he can see my scans and it is clear there's alot of pressure .... Frustrating ...

The LP Shunt as he tells me is one of the best if not the best on the market.I ofcourse am one of the cases that is difficolt..Go figure and there's many of us in this same boat ! It is a programmable shunt.It can range from 20 - 160..

So with every thing thats been done I'm still loseing my eye sight more on the right with only a few spots on the left.Since I've been DX'ed I've gone from a 20/25 to a 25/75at last check alittle over a month ago per my vision field test.

I've called my Eye Doc this AM and expect to see him next week I'm sure he usally gets me in pretty fast.I'll learn more from him then.

I do want to add that the sergeon has tried me on many different types of meds,even a opium type of pain patch that made me throw up for 10 hours, overdosed me ! so I want be trying them again.

As in the past after I have an adjustment it's only a matter of time and it seems that my body readjusts the pressure again,making more CSF causing me to go back in for another adjustment.so I'm not sure what to expect and I'm dreading it ! Before I have the adjustment I will more then likely go back on the Diamox first and then go from there.. however that to just buys alittle more time...

Thanks everyone for your responces it helps to be able to talk about this other wise as we know you just wanna go insane !

Wow. Have they considered Octreotide for you?? The only thing holding you back from getting it is the insurance company's willingness to pay.. there are drs that will prescribe it!

Hi MC 2010,

I'm not sure that I would benefit from it,I read it and it says nothing about treating IH,Am I missing somthing? Please tell ..

No mention of this med. at all . What or how dos it work for IH ?

If you read the notes I posted from the IHRF conference there is info on Octrotide. It is an off label treatment for IIH and most insurance will not pay for it. Paula

Hi. My name is Hopeful. I've had 11 brain surgeries (all of them in John Hopkins MD). They have told me that if the pressure release valve that is in my head does not relieve the pressure on my brain and I keep trowing up, they will have to drill holes in my ventricles. I was initally taken back my this news, but my surgeon (Ben Carson) said that it was a common procedure with people with hydrocephalus in which shunts keep malfunctioning.

HI Hopeful ,

TY thats also good to know,curious as to how this procedure helps,keeping options on the table you know,sorry to hear you've had so many surgeries and problems, Please let us know if you have this done,I hope you find relief soon.

@ MC 2010 Saw my N-op today and forgot to right the name of this drug down I will be callling him tomorrow with it,he said please do he wants to know ,the more he knows the better he can help me and the rest of his patients,I really like him !

@ Paula Thank you too ! I did go back and read up on your IHRF post,it was awesome and full of info TY ...