Pseudotumor

[rdelly01 25]

So I've jumped through all the hoops my insurance company required and im waiting for approval and I'm meeting with my surgeon next week to schedule VSG...

About two years ago I had a consultation with another surgeon who "warned" me about having WLS with a condition I have called psuedotumor cerebri. He stated he had a patient who went blind post op and believes that it was due to her condition and surgery.

It has been on my mind even though my doctor and surgeon feel that it was a coincidence and that this doctor is now a little "gun shy".... I can't seem to find anything online with WLS in patients with psuedotumor cerebri....

Anyone have any input?

Thanks!

[Miss Mac 6,262]

Treatments and drugs
By mayo Clinic Staff

FRom the Mayo Clinic Website:

The goal of pseudotumor cerebri treatment is to improve your symptoms and keep your eyesight from worsening. Your doctor may prescribe medications to control your symptoms.

If you're obese, your doctor will recommend weight loss. You may work with a dietitian to help with your weight-loss goals. Losing weight may improve your symptoms. Some people who are morbidly obese may benefit from weight-loss programs or gastric surgery to lose weight.

[rdelly01 25]

Thank you! ... I know weight loss can help with it, all my doctors were confused by what this surgeon said and they all told me otherwise but just wanted to make sure no one on here had any problems with it

[jacileggs 402]

I also was diagnosed with pseudo tumor cerebri a couple years ago. Having lost 100 lbs my symptoms are pretty much all gone. Still have to have my follow up appt with eye doctor though. Haven't ever heard of anyone else having this before. Good to know I wasn't the only one.

[jacileggs 402]

My surgeon wasn't concerned with it at all pre op. He agreed that the weight loss should help resolve the symptoms.

[rdelly01 25]

I've had it since 2003 and symptoms get worse when I gain weight ... It just scared me when that surgeon said that but on the other hand I can go blind from the psuedotumor also (I have permanent vision damage from it)

Thanks for your input

[No More Shelly Belly 94]

I also have pseudotumer. Medications have helped, but I still experience swelling in my head and eyes. I had the surgery for this reason, and although I am better, I still have symptoms. This is the last of my medical problems to fix with weight loss and my neurologist and eye specialist both told me that surgery might help, but now they are not so optimistic about the surgery (for me). I have to say I feel wonderful though (minus a couple migraines)! I am forever grateful for my sleeve and I regret nothing. Good luck to u all!

[rdelly01 25]

Thanks for your input... I hope you find relief with medication. I took diamox for a long time and it helped but the side effects sucked!

[No More Shelly Belly 94]

Side effects are a killer! In so used to my hands and feet being "asleep," but I am scared of long term effects. Did you have any problems with your kidneys?

[rdelly01 25]

I've had over 30 kidney stones since I took diamox... What about you?

[No More Shelly Belly 94]

Not yet thank goodness, but my docs wanna be more aggressive with the diamox. Every pain in my back has got me paranoid!

[rdelly01 25]

I know every time I get an ache I think oh no it's a kidney stone! I was on 500mg I think it was once a day but I was on it for a couple years and taken off because psuedotumor got better and then put back on because it got worse .... The numbness and tingling was horrible and the metallic taste in your mouth disgusting! I will say though, I would rather deal with the side effects than to have to get a spinal tap!! I started drinking more Water and squeeze some lemon in there, it seemed to have helped with the kidney stones... Good luck!!

[No More Shelly Belly 94]

I'm up to 500mg four times a day. I did not do well with the spinal taps! I've had blood Patches after each one. I guess I can't stay still long enough to heal. Oops! Thanks for sharing your story. I haven't had too many people to vent to about this. It's nice knowing you are not alone!

[rdelly01 25]

Has your doctor discussed putting in a shunt? ... I know that's another option.... 2000mg a day is a lot!!! I know it's nice to have someone understand what you're going through!

[No More Shelly Belly 94]

I've asked what happens if I max out in diamox with no change and my neurologist doesn't want to count the chickens too early. I've done my research and I know that is what is next. Since my kidneys are fine, she wants to continue with medicine. I thought for sure, losing weight would help! I'm just a little scared now.