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.

[jessewait]

I have been diagnosed for four years now with PTC.  I am now a 39 year old male, 165 pounds at 5'11".  I have undergone a total of 14 surgical procedures including two VP shunts, Optic Nerve Sheath Fenestration, successive spinal taps and my pressure still remains around 45 or 450, depending on what part of the country you are in.  My lowest, after the second shunt, still reached 25 or 250.  I have not worked now in 11 months and am considering applying for disability, although you only hear nightmares about the whole process.  With not working and paying COBRA insurance premiums, I am completely broke including spending all of my savings and retirement.  My intense headache pain (actually eye to temple pain on my right side ) is daily and intense. I see pain management every 28 days for narcotics to partially relieve the pain, but my quality of life is completely gone. Other than the Pain Management Doctor, my team of specialists have pretty much gone by the wayside at this point.  Very discouraging....  My peripheral vision on the right side is less than 50% and has not returned as of recent.  I am now finding it especially hard to consider applying for disability, mainly because the task just seems too great.  With our condition, it is very hard to sit and read paperwork, organize dates and facts and attend appointments.  Please keep me in mind if you get any additional help or resources and I will do the same for you all.

[keram]

I was diagnosed with PTC over a year ago after almost 10 years that have led up to it. Constant migraines, vision loss, bells palsy (that appears to b permanent), and a major disruption of life, I am now being passed around to a new Dr for pain control. What to do? I can't work this way and it is affecting my families income. Can I go on disability.? Answers anyone?

[aflin]

They say that is most common in women of child bearing age and who are overweight. I have obviously gained weight because you don't feel like doing things when you feel crappy but I had all my symptoms before I ever gained any weight and was a fairly small size so go figure!

[aflin]

I am going through the exact same thing had 1 tap done and ended up having to get a blood patch. I felt good for 2 weeks and then all symptoms came back. I also am on migraine medicine because I have a history of migraines. I am at my wits end with this whole thing I felt better getting a diagnoses of pseudo tumor at first because I thought that would lead to answers but I now feel like I am getting worse and there is no relief. My quality of life is horrible...it takes everything I have to be able to work and sometimes if I do make it I can't last a whole day. They actually did sinus surgery on me first thinking that was some of the cause of the symptoms and that turned out horrible...I am in worse shape with that than I was before....so if anyone finds answers please post them. I guess we are all in the same boat, but I want my life back and the craziest part is that I work in a hospital on a neurology neurosurgery floor and still can't find answers

[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

[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.***@****  

[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~