I understand your frustration. I had four surgeries before I was at the right place, three shunt related and one that they thought may help, but it turned out it was still my shunt.

I had mine placed in December 2010 and I was not set at the right level until May 2012...so please, hang in there. Make sure you are talking with your NS and keeping them very, very informed. Do not give up. Make sure they make adjustments, take scans to be sure there is no malfunction, etc.

I can try to answer any questions that you may have, so please do not be afraid to ask.

My name is Heather, it is nice to meet you...and we are ALL here for you!

Cgoyergrand7,
I am sorry you are still unwell. I user stand your frustration. I thought my LP shunt was going to be "the thing" but it wasn't. I had a surgery to revise it four months after it failed, which is around the time I initially had it placed. I then had the revision surgery fail, shunt was removed. A week later I was going to have vp shunt surgery because it was "the thing" that was going to make everything better. It helped some, but I was discouraged that it didn't helped other major problems. It turns out I had an underlying condition that was causing all of my problems. I had to then have surgery to fix that problem so that my shunt would be able to work to help give me less pain.
I say this not to compare stories, but to give you hope. You may think, what is so hopeful about my story. Well, although I am still struggling I found the source to why I was in pain so my doctors know how to treat my pain most effectively. It may be that you need to have your shunt readjusted, as Heather said. It may also mean your shunt isn't working properly- that it has already failed and you are left with a shunt that no longer helps get rid of your pain. It could also mean you have an underlying condition that your doctors have not yet discovered.
We are here for you and are here to give you any support and comfort you need. We treat each other here like family.
Hope some of this was helpful.
Many prayers and gentle hugs sent your way,
Mallory

Heather,
You made me smile :)

Sorry for my grammatical errors!

Cgoyergrand7, I'm so sorry things aren't working out for you. Sometimes it takes doctors awhile to figure it out and get things straightened away for us. Just like any other profession. That does't help you much right now, though.

It's so hard to hide things from your family. Those are the people who are supposed to know you best, love you most, support you the most. If they don't know fully what's going on, who does? That's a real question, not a rhetorical one. Who does?

We all love you here, and we want to know your story here. You can tell us everything. Maybe someone in your family or a friend, too?

Thanks for your help. The doctor's insist that the shunt is working fine. It is an adjustable one but I'm afraid to have the setting changed.

How'd I make you smile, Mallory?!

Cgoyer - Why are you afraid to have the setting changed? It can help you...just make sure and I mean TOTALLY sure that the setting is changed the smallest amount possible. Have them draw out a picture of where you were set and are newly set. That is what I did...

Heather, you made me smile because of your kind, sweet, loving, and knowledgeable words :) It is so nice to have other people who not only understand the physical pain, but are knowledgable (or try to be knowledgable) about our condition and how each of us help one another as much as possible.
I guess when I read your post it made me smile and brightened my day.
Mallory

Oh! Yes, I try to be as honest, and helpful as I can be...no matter how much pain I am in, I also try to be as positive as possible!

I so feel you on this! I work really hard to keep a positive front up, but inside, I feel like a wreck. Sometimes I think we do our loved ones no favors by protecting them from the extent of what we're going through, but other times I feel like it would either chase them off or annoy them. It is difficult to have one of those "you don't LOOK sick" kinds of conditions. You have us, though... and we have you! :)

I can understand your frustration - I have stents and when they didn't "fix me" I was so disspointed. I now am scheduled for a VP shunt beg. of September and hope for the best but one never really knows right?
From reading other posts and other advice given by others it may be the shunt itself and needing a new setting or your body still adjusting to it? I can't give too much advice as I don't have mine yet - but I can relate because I'm slightly concerned about the same thing.
I experience the same things you described and lately the memory problems and finding words concern me the most and I'm not on Topamax anymore. Your not useless either you just have to find a new way to operate as "you" this disease changes our lives a lot and it took me awhile to adjust to what I can do now verses what I was able to do before this all started.
We all have bad days too and this is the perfect place to discuss how were feeling so hang in there were here for you!
:) Mandy

They say my shunt is set at 1.5 and can only go down one more setting (or so I'm told). I'm afraid to get it changed and then if it is a bad setting for me having to wait forever to get in to see the doctor again to have it changed again.

I'm not sure what type of shunt you have, but I have a Medtronic VP shunt, which was placed on 6/20/12. I felt great right after surgery, but within a few days of coming home, I knew I needed an adjustment - my head started feeling full, my neck and shoulders ached, my vision was more blurry, and the whooshing in my ears came back. I know that my original setting was 1.5, which is the factory setting. At my first follow-up appt, my NS turned it down to 1.0, and scheduled me for a follow-up two weeks later.

Same thing happened after the shunt was set at 1.0, although the symptoms were't quite as bad as the first time. At the 2nd follow-up appt, the NS set it to .5, and that is the lowest setting. It's fully opened up now. A few days after the adjustment, I thought the same things were starting to happen, but I gave it a few more days. VIOLA!! I think that my body now gets this whole VP shunt thing. It's been two months since my surgery, and I'm finally starting to feel much, much better!! NO WHOOSHING and there hasn't been for the past 10 days!! (Can you tell I'm happy about this?)

I guess if I could say anything, I would say to follow up with your NS - you may need another adjustment down. And give it time after the adjustment - at least for me, my body definitely seems to be taking longer to get used to this shunt. (I had an LP shunt placed back in 1991, and never had any problems with it after it was placed. It lasted me for 20 years, give or take. Felt like a million bucks right away).

Keep in mind that age is a factor in this, too. Father Time is not kind to people in the surgical realm. It's taken me a lot longer to heal now at 44 (almost 45) than it did when I was 24. But DEFINITELY follow up with your NS - mine always has me go for a CT scan prior to my follow-up appointments if there's even a possibility of an adjustment.

Hope you're feeling better soon!! Lots of hugs and good thoughts coming your way!!