Pseudotumor Cerebri Support Group

TJ,
I can't answer this question. Due to the amount of pressure that spewed out of the ventricle when my NS put in the shunt, he has mine set at the highest setting and I've never even had a low pressure headache. That is how fast my CSF is producing. Are you having headaches or what?
Sorry I can't be much help. I've been trying to find a support group for this dang gastropheresis and there is none. I'm so sick of the nausea that I don't even want to look at food much less try to eat anymore. I'm not wanting to go back in for TPN either, but I finally broke down and called my doctor and left a message this morning.

Hugz.
Liz

Ooh very interesting question. My shunt is only a week old but am curious on adjustments

Let's see it took about 1 day. I had it checked to see if it was blocked and my NS just put it back down to the number where I would get low pressure headaches and the next day I started having them, so he placed it back to the number it was set on and they went away the next day (each time I saw him it was about 4:30 in the pm and then the next day I felt the effect.

He said it is a major deal to check the shunt for blockage (a two day event) so he just checked it that way to save me the hassle.

Blessings, Jazzy

sorry forgot, with the first shunt I had, all the same symptoms came back.

Aimee's symptons returned. When the NS adjusted her's that said to give it about 5 days. But who knows. ShHe gets a Lumbar shunt on the 17th

I don't know bout small adjustments but when my dr. turned mine off or I guess techinically to 200 and shldn't work, he did it at 9am and by 9pm I was in crazy pain. Neck, back, head aches...my head actually felt really strange...so I might've felt the adjustment so soon cuz it was a big adjustment but I still felt it that quick.

It took about two months for my papildema to go away, remember that. I don't remember feeling different. I actually have many of the same symptoms. My NS has never checked my adjustable shunt, much less adjusted it. I hope yours does more for you and I am sure he will. You will need some time to adjust to the new pressure, so it may take a little while. Good luck TJ!!!

TJ, are you having returning symptoms? Please keep us updated, I'm worried and hope you if you are having headaches they have resloved. Jazzy

Thanks for the input everyone. Remember Johnny 5...alive....INPUT! ok maybe I am showing my age. That is the movie "short circuit". But I love INPUT!

Jazzy, No need to worry, I am alive and well. Having some small headaches but nothing like b4 the shunt and absolutely no neck or back pain so I am way ahead of the game. I had the adjustment on Wed of this week and today I think the headache is a little better so I am headed in hte right diriection.

TJ

Oh thank goodness! thanks for the update and wishing you many happy headache free days.