pseudotumor cerebri

[jlotus]

Help i have had pseudo for 10 months now my nero sent me to get a shunt put in, but the nero surgen said he won't do that because of weight and my cronic migraines. now i am getting passed off from doctor to doctor like no one wants me or knows what to do with me. just this last one that i was suppose to go see i was going to get eye sheathing done but he said my optic nerves were deformed??? i said hello i have pseudotumor cerebri he gave me migraine meds and sent me home.comes to find out he dosn't do eye sheathing at all ; im already on 200mg of topamax a day  so he said add this see him in 3 weeks lol. I am in so much pain i am done i can't go on like this anymore do you have any advice what i can do about this? oh and yes i am on diamox 1,000mg a day.

[Sherrizim]

Hi,

My son was diagnosed with pseudotumor cerebri when he was 7 months old and got a shunt when he was 2, so I am a little familiar with this disorder.  I have some questions.  Has your ICP returned to the normal range on Diamox?  Has your papilledema resolved?  Has your vision been affected?  Why, because of your weight and chronic migraines did the neurosurgeon not want to do the shunting?  What did your doctor say to add to your Topamax?

Sorry for all the questions, but I'll have a better understanding of your current condition if you can answer them.  Thanks!

S~

[Gina173]

I have a Shunt for Pseudo Tumor and currently take Diamox and Topamax.  I was assessed for weight loss surgery and turned down by Pacific Care of CA because I was at 38 BMI not 40.  I am feeling very misunderstood based on many of the complications some related to the  Psuedo Tumor related issues.  I am reaching for answers with little chance for support....any sugesstions .  My e-mail address is reginat.***@****  

[jo150408]

I was diagnosed a year ago with psudotumor cerebri.  I did not respond the the medications.  My eyes still dimmed when standing after laying down.  I have pressure in my brain, and have a hard time dealing with stress.  I have ringing in the ears constantly.  I moved this summer and went to a new doctor.  She is a neuro-opthamalogist.  She had the MRI redone, and had a MRV done.  The MRI shows that I have a pineal cyst in my brain.  It seems to have many of the symptoms of the psudotumor.  It is in a position that it can partially block the veins that let the fluid out of the brain which can be the cause of my high spinal fluid pressure.  I had three spinal taps last year all around 34.  Normal pressure is less than 20.  I go to see a neurosurgeon this Friday.  You might want to check out the posts on this web site regarding pineal cysts, and then have your doctor check more closely.  My first MRI missed it, or the radiologist didn't know what to look for.

jo