I was told in March of this year that I have a rare condition named Pseudo Tumor Cerebri, which is a false brain tumor,(no mass) with all the symptoms. Three common factors are in all cases of my kind 1. Women, 2. child bearing age 25-45 and 3. Overweight, go figure!

My current doctors have told me that banding may help to send this demon to remission and enable me to get off the meds and prevent me from having possible surgery, namely (Lower lumbar shunt or optic sheath) I have chosen to go with banding and am scheduled for September 14, 2006.

I must take 1000 mg of Diuretics daily to prevent the build up of fluid in the spinal cavity and scull, as you can imagine causing many problems if left unchecked.

I would like to know if anyone has dealt with this factor when choosing banding, or know someone who does. Any info regarding this would be helpful. I'm making sure that everyone with a knife in their hand , is very well educated. I know the meds will be a problem after surgery do to the amount and size. I know the amount of fluids may be a problem as well due to the amount of water I must drink to stay hydrated (with the medication).

Thanks for all your help!

Looking forward not back.

Hi Mom!

I've been lurking for ages now, but finally joined to jump in on this thread :eek:

I'm surprised there's so many PTC folks on here, there's supposedly only 12,000 cases in the US. I was diagnosed 8 years ago at the age of 15. In my case it got so bad that it was debilitating. I could barely move from the pain, and had to be in a dark room or wear sun glasses all day long because of the damage to my optic nerves. My entire right arm was numb, and I had huge blank holes in my vision. Sorry, not meaning to scare anyone out there, just pointing out that every case is very different!

After the doctors finally figured out what it was (they insisted it was a pinched nerve for the longest time!?) a spinal tap provided immediate relief and a real diagnosis (in fact, Dr's aren't supposed to give a PTC diagnosis without a spinal tap). The spinal Fluid regenerates rather quickly, but I had a good few hours of normality, and the pressure never got back to the point it was before.

I lived with PTC for about 6 months, and then it just cleared up. I attempted to lose weight after the fact, but I don't think I had much success at the time. I know that your chances for reoccurances goes way down if you lose weight, but I'm not sure about it helping you to recover. PTC is really an understudied disease....

Anyway, I'll wrap this novel up. I'm fine now, no reoccurances, and the only permanent damage is some vision loss from the papiladema. Hope this was a little useful, I wish you the best!

Allison,

I agree with all the above. The weight loss is suggested to keep it from reoccuring. Not a cure. There is no cure, that I understand. I had many of the same symptoms you had and it was caught quickly. Poked, drained, meds the whole nine yards. Some vision loss here but the meds seem to keep things in check. Doc just reduced my meds because he believes the surgery will aid in the remission process. Hope to get off of them all together soon after. I'll tell you one thing, If I have to have ONE MORE MRI, I'm going to buy my own machine!!! LOL Seems like a good investment to me. Hope that's not the case.

I'm happy to hear your doing well. Are you having or have you had the band?

I do hope that everything continues to go well for you.

I spoke with my OHSU Endo about the possibility of this, and he said nope, he highly doubted this was my problem because I have an actual brain tumor, not a false one. He is quite sure that once I get the Cushing's resolved the headaches will go away.

He figures that my headaches stem from not having enough cortisol, after having too much of it. I hope that makes sense.

Vines,

it makes perfect since, I hope things get resolved for you soon. It never hurts to be sure and exploring all of your possiblities.

Well, I finally got the report back from the neuro's assistant. I've been having terrible headaches now for a year. Some of them land me in the ER as "atypical migraine" meaning they don't know what the heck is going on. But they sock me full of stuff so I stop throwing up and duladin to kill the pain. Lots and lots of duladin.

Anyway, he's decided that after reviewing the MRI & MRV that there's no reason for me to be having such terrible headaches. The according to the assistant, apparently, my headaches are solely caused by rebound from taking narcotics, and I need to wean myself off them. So, man those are some POWERFUL narcotics to be causing rebound headaches 10 months into the past! That's a powerful kickback to those pills!

Over-the-counter pills don't do anything for my headaches so I don't even bother with them, and this apperently bothered the neuro. I have a constant 5 headache, excpet when it gets bad of course... Which is when my tumor turns off.

Oh, and you want to watch a doctor get wiggly? Tell him or her your tumor you just turned off. They will either not believe you, or they will get the willies...

Strength and Courage!

Crystal

I was diagnosed 4 years ago after loosing my vision to a headache that was more painful than anhything i could imagine. I thankfully had full vision back after my lumbar puncture. My opening pressure was just 36, I've heard of much higher. Fortunately for me, I have remained in remission. I will however, be using this issue for insurance to get an easier approval. Its a horrible disease to have; headaches beyond your wildest imagination. True, with weight loss my chances of having this be gone for good will be greatly improved; as with any disease.

Best of luck to all you PTCers.

Sheri

My neuro just fired my yesterday.... All because I wasn't happy with waiting 4 months for an appointment! The nerve of me!

Sorry to hear of all the "headaches" so to speak, I know the feeling when it is'nt one headache its another.

I know this is an OLD thread but I have PTC disease and have a VP shunt and thought getting lap band could help my PTC disease. I was wondering if any of the previous posters to this thread that had lap band if they could say if it helped or not. :wub:

Loosing weight is one of the best possible ways to reduce symptoms.