Pseudotumor

[rdelly01 25]

It's really frustrating when you're told losing weight will help and it doesn't... I hope you find some relief from it!

[No More Shelly Belly 94]

Thanks again! And good luck to you. Leave it to me to be the small percentage of people with this diagnosis to not find much relief from WLS! Oh well, can't win them all! Don't forget to post your progress! I'm excited to see your success story! And nice to meet you!

[Addawn 81]

I had a pseudo tumor 20 years ago when I was pregnant, 3 spinal tap later (oh my God!!!!) and never had a symptom again.

[RunningA5K 645]

I, too, am a former pseudo tumor patient. I had it back in 2005, had a lumbar puncture that went horribly wrong, and ended up on bed rest for almost 5 months making me gain even more weight than I was when I was originally diagnosed.

Thankfully today I have been in 'remission' (that was the doc's term) for several years, and the continued weight loss has kept it away!

I wish you the very best!

[SCSleeve 18]

Hi! I'm new here, but I also have pseudotumor. I was originally diagnosed in 2000 and went into remission after about a year. I started having bad symptoms that were different from the first time about a year ago. I'm starting the process to hopefully get the sleeve surgery in the next month or two, with the hopes that weight loss will help like last time.

The biggest frustration is that PTC has made exercise almost impossible for me, so I've been unable to lose at all on my own. I'm just happy in the weeks when the meds haven't caused me to gain anything. . My neuro is skeptical because he sees patients who had old school bypass years ago and now suffer neurological side effects of malabsorption. I don't think he knows a thing about the sleeve, so although I don't need his permission I'm hoping he will come around and support me in this.

Nice to find other PTC patients here - isn't it *awesome* having a rare disease?! ????

[CheleLynn45 615]

I was also diagnosed with psuedotumor cerebri two years ago. The only thing we did to help it was have me lose weight. I was able to lose almost 50lbs and my pressure went down a lot. Unfortunately I was unable to maintain that loss (my life story) so my surgeon said that this surgery would help it tremendously.

I am lucky I have never had any of the side effects of the psuedotumor, just showed up after routine eye exam and then was sent to a neurologist who verified what I had. I was told that weight loss is one of the number one ways to treat this.

[No More Shelly Belly 94]

Just had another appointment and I showed no progress. I'm down to 126 lbs and I'm starting to look a little " too skinny." What a problem to have, I know, but I really wanted some relief from this condition. I started looking for some other doctors because my eye doc and neuro just wanna keep me on medicine. When should they recommend other options? It's been two years now?

Also, I was on the Internet and saw a psedotumor lawsuit. Basically it stated if u had taking any of the birth control on their list, and then got diagnosed, I might be a candidate. Come to find out, I had taken two of the bc's and gained a whole bunch of weight. And that's when I started having symptoms. I'm kind of excited if I qualify! This means my past and future medical bills could be paid for. Anyone else hear of this?

[Sunnyskies2283 23]

Oh no Shelly! I would be very disappointed if my side effects of pseudotumor didn't go away but count my blessings they have except for the permanent vision loss.

I have not heard of this lawsuit. I was on seasonal birth control when it triggered and I go back and forth thinking it was just my weight or a combo of weight and bc.