Well, I'm with MegAlfOCon on the getting a surgeon who will really listen. One can have an infection without the incision looking like it, one can have issues with scar tissue in places or one could have the pressure set wrong, just to name a few possibilities. I'm only experienced in the pressure issues - if changing position really makes a huge difference, that could be part of it. But you've written where position was better being upright and a different post about lying down being better. For DD even at her best setting, she can under AND over drain (throw in a cold/flu and it can be an almost certain stay in the hospital). Lying down helps when over draining (for chronic over draining the setting gets put up a notch), sitting up helps when under draining (for chronic under draining, setting gets put down a notch). Wash, rinse, repeat until one finds an ok setting. When we could not find a good setting, we've been in very low pressure situation without an antisiphon, later it changed to high pressure needing an antisiphon and even later where the antisiphon wasn't enough. Most people just need an antisiphon and I didn't think most people shunted as an adult get the freaky pressure/compliance problems little kids sometimes have.
If you have consistent positioning issues, tell them and ask if your valve needs to be adjusted. I would also consider asking them to do a shunt tap or lumbar puncture to test the csf for infection and whatever read on the pressure they can do (those are not the best pressure readings but ...).

Agree about the suggestion about over draining. That is what was happening to me before my recent revision and I'm uncertain if I need to "go up a notch" now because I've been having a lot of sinus/ear pressure issues a the end of the day that I had before my revision, but without the foggy feeling. I'm not sure if it is TMJ problems that I caused by clenching my jaw all the time when I was trying to focus or if it is caused by over drainage. I've been for muscle tension more often, especially when I'm on the computer or driving, and noticing that my jaw, neck and face are clenched more often then not and relaxing everything and it seems to have helped a bit but not enough and I'm really fluid sensitive. My neurosurgeon has commented that my pressure setting is high but that could be from being shunted since age 6 months and only got a programmable shunt almost 5 years ago, so my ventricles are used to being really dilated.

Anyway, in addition to helping me "think", I guess the major point is that it is important to know your body and if something doesn't feel right then it probably isn't. It is important to be open minded when talking with a provider you feel is really listening because our body is a system so when something changes, even for the better, something else may get thrown off. I dream that someday it might get easier. =P

When i started having bad headaches i went in i knew something was wrong but would not believe me then i started having seizures too then my doctor went back in chart to find out a small mass was found. I had another mri done to find i had a brain tumor by my spinal cord that's been removed now. I know something is wrong the pain different from the headaches i had just trying to get someone to listen to me is really hard but I'm not going to give up. I was fine when i was laying down to take a nap but now that I'm up my right side of my head kills even neck with blurry vision. I'm so glade i found this support group so i can talk to people that know what I'm going through. Thank you so much for your input I'm still getting used to all this it will be 1yr feb 19 ( 36 yrs old when i got it ).

I see my neurologist in the morning an the neurosurgeon the 28th. Been getting really sick to my stomach and just foggy will space out not sure but might be having seizures.

Partial seizures would totally make sense with Nausea and "cloudy thinking"! :Ponder:I wonder if your doctor would order an EEG before your appointment to assess? Keep us updated and hang in there! :)

Nothing was done have to wait until the 28th all he wanted to do was give me a nerve block but i said no because it dint help last time. I'm trying to stay strong but its so hard having really bad moode swings before all this i was fine then the surgeries came the moode swings it was getting better but now its bad again. all i want to do is sleep and stay home away from people but can't keep living like this i just want my life back with no moode swings.

:hug: I'm sorry that didn't get you anywhere and that you are still frustrated and in pain. I'm not surprised that you are having mood swings with all you described, both from a stress perspective and an ongoing pain and probably brain injury perspective, given that you had a mass. I wonder if anyone has suggested neuro psych testing. Several studies have linked mood swings to changes in working memory and processing speed. I play Luminosity to "train my brain" (and track changes too) and noticed a definite decrease in my problem solving ability (mostly math calculations) and processing when I was over draining. I was also ALOT more emotionally reactive and withdrawn, which is really not me. When it was really bad, I had difficulty understanding what people were saying and finding the right words for what I wanted to say. It was quite a humbling experience :icon_redface: , given that (if you haven't already figured it out) I'm kind of a know it all :winky:

Given your medical history, the problems you are experiencing may not be detectable with scans or an EEG because it may be related to how your brain receives and processes information. Perhaps an fMRI or PET scan might give you more data but those are only being used in research. I had the basic testing, i.e WISC III or IQ test, when I was around 9 and again at 14 and it has been extremely valuable to help me understand how I think and why I'm better at some things and not so go at other so that I can either communicate that to people or figure out a solution that allows me to use my strengths, i.e. I can't listen and take notes so I use my people skills to ask someone for a copy of there notes and most people are happy to share.

Although I haven't been retested as an adult, I continue to have the same cognitive strengths and weakness so because I had the testing as a kid, I know what to look for to figure out what is "normal" for me and what is off, so Luminosity works just fine for that.

I will keep you in my thoughts!

No one has. Does it ever get better and does any memory game help? My moode is up and down i cry really easy and get mad over stupid things it makes my job really hard to deal with.

Yes, it does get better, if you "work" at it. I put "work" in quotes because it doesn't take a lot, just a few minutes a day. One of my new goals is to sit down for a few minutes and write down my ideas/thoughts on note cards so that I can improve my ability to put my thoughts into words and then structure those thoughts. I tend to have spaghetti brain, which makes it difficult to communicate with others at times :confused:

I found this site with free games on it. I need to play games like the Spiderman game to increase my verbal fluency, although I suck at them. In general the games that are the hardest are probably the ones you need to do the most :p
http://www.memory-improvement-tips.com/brain-games.html

I'm listening to the audiobook, The Tipping Point, which provides different examples of how little things make a big difference. I have experienced that to be true in my own life, small changes lead to big changes over time, if you just stick with it, hence why it is better to start with little things, like doing 10 minutes of activity (be it walking the dog, formal exercising or dancing around the kitchen to your favorite song) or listening to an upbeat playlist on the way to work to get your energy up, or smiling at one new person every day. Those things add up over time.

Thanks for helping me remember that, because writing that out has helped me better understand how powerful that has been in my own life. :hug:

I finely got answers its nerve pain from the shunt i was put on gabapentin for the pain i hope it helps. I go back for a follow up in 3 weeks if that don't work i will need to see the neurosurgeon to see what needs to be done next now its just a waiting game.