Pseudotumor Cerebri Support Group

Pseudotumor cerebri (PTC) is a neurological disorder that is characterized by increased intracranial pressure, in the absence of a tumor or other diseases affecting the brain or its lining. Diagnosis requires brain scans and lumbar puncture. Characteristic symptoms are headache, transient visual obscurations or transient visual loss in one or both eyes usually lasting...

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armywife96 08/05/2012

I am so frustrated with my doctor. I know he is reading from the textbook and the textbook says you need to lose weight to "cure" PTC but I swear if he mentions gastric bypass again I'm gonna pick the textbook up and shove it down his throat. I know I am over weight by about 60 lbs (70 if you want me in the lower end of my weight class) but it is like he isn't even listening to me. I gained 40lbs in the past 2 years roughly 10-15lbs after each steroid shot I was given for severe allergies. I'm doing everything I can to lose weight. A nutritionalist told me I have the perfect diet and that if anything to increase what I eat because I exercise so much. I work out 1-2 hrs a day trying to lose weight and most weeks I just remain at the same weight some weeks I gain a lb or two.
If gastric bypass was really a cure for this I would do it but I have a friend who has had it and she eats a little more than I do. The dr just keeps saying I am not trying hard enough cause I'm not loosing and if I ever want to be rid of it I have to do gastric bypass. My bloodwork supports that I am eating and exercising but it's like they only see me being over weight. I am so don't want gastric bypass because it creates so many new problems but he is ready to drop me cause I'm "not trying hard enough!"
Has anyone here had it, does it really solve all the problems?

deleted_user 08/05/2012

I found a study supporting weight loss surgery for ptc, high percentages of ptc were resolved after signifigant wt loss. Personally if my insurance would cover it and see it as what would fix me and not cosmestic i would rather do that than a shunt which may be in my future. Im at the point now im too exhausted and hurt too much to exercise. I think the study talked about increased intra abdominal pressure possibly being a factor. I feel lap band or gastric bypass are less scary than a shunt but thats me :)

deleted_user 08/05/2012

I am also overweight and this has never been mentioned to me. It sounds as if u may need to get another opinion or see a new Dr all together. This upsets me because ur doing so much already to try to lose weight and I give u credit for it! Please seek another Dr out u need someone whom u trust treating u.
:) Mandy

armywife96 08/05/2012

There are three surgeries out there gastric bypass, gastric sleeve and lap band. Gastric bypass is the most severe it removes all your stomach and has many life long complications. It is meant for severely obese patients. The gastric sleeve removes 80% of your stomach, has great results but doesn't have all the negatives associated with it. The lap band is a removable device thy they can adjust it has good results in some people but also opens the doors toady types of infections because you have a foreign object and the risk of malfunction of the band. I would be more inclined to the later two if my insurance paid for it but they don't. Honestly I would be considered higher risk because I am not more than 100 lbs over weight. Also i was told and please correct me if i am wrong, if it didn't work I would have major issues if I ever needed a shunt it could make it impossible because of where they need the shunt to drain into.
I don't know it is just emotionally wearing on me. Yes I would live to be a perfect size 6 but not if I am going to emotionally and physically pay the price for it. Maybe I just need to think on it more.

1greenmnm 08/05/2012

I would be more afraid of any abdominal surgery because it is all soft tissue which would be more painful than a shunt, plus shunts are removable. I know I may seem biased since I have a shunt, but it's really not all that bad. It's the least invasive brain surgery if they decide to place a VP shunt and a not so invasive surgery if you have an LP shunt placed. I have had both, currently have a VP shunt. I just recently had a major brain surgery and the VP shunt was nothing compared to this last surgery. Find a good surgeon who is knowledgable, cautious and someone who you trust. I had a cousin who had the lap band surgery (who didn't follow the rules) who ended up having it removed. All of them have the power to help you lose weight. Lap band is the least invasive and can be removed. If I HAD to decide between all three I would chose lap band. But that is simply my opinion.
I think what you really need is a new doctor though. Your doctor is demanding that you take invasive action. This is your body, not his! This is a decision you should make for yourself, not have it forced upon you because he is threatening you ion that he won't be your factor any more unless you do as he says. I say good riddance.
Hugs to you!
Mallory

1greenmnm 08/05/2012

*doctor any more
Sorry!

magnatomamma 08/05/2012

I will echo the thoughts of others in that I think you need a new doctor. I could strand to lose some but I'm not very over weight, but still my doctor has never said that I should try to lose in order to fix this. I know it is supposedly more common for overweight women, but there are enough that proves that weight is not the only factor.

I also,know two people who had gastric bypass and are up to the weight they were before the surgery. There are a lot of rules and it isn't a miracle worker.

You may have been someone who once mentioned that you are in an area without other neuro doctors. That would really stink. I would try to get a second opinion or at least someone who is more compassionate and understanding of not o ly the disease, but what you are going through. I'm on my 3rd doctor in less than a year ;) . Steroids certainly do a number on the body and don't help the weight factor.
Good luck!
Hugs
Amy

deleted_user 08/07/2012

i had the same kind of doctor once a couple of years ago and she too was reading from the textbook but what she didn't tell me was the reason i couldn't exercise was because i had bulging disks in my lower back, i chose the vertical sleeve which basically cuts away the major part of your stomach and leaves you with a stomach pouch the size of a walnut and yes the first six weeks after surgery are not easy to deal with as you have to be serious about changing and giving up a lot of differend foods and how you prepare them but once you get past that you are basically back to where you were just with a smaller size pouch of a stomach and it is so less invasive than a bypass, that';s why i chose to have that procedure and i don't regret it at all. hope this helps.

armywife96 08/07/2012

Sweetcee, thank you! I would consider doing that type of surgery but my insurance does not pay for it only gastric bypass. I already don't eat that much to begin with. For example (and no I don't eat McD's very often but I'm using this as an example because everyone knows the size) I can only eat 1/2 to maybe 3/4 of a McDonald's cheeseburger (not quarter pounder or big Mac just a cheeseburger) and that is it no fries or anything else with out feeling full. On a normal day I will drink a slim fast shake for breakfast and dinner; have either 1/2 sandwich (low sodium turkey) or a small garden salad for lunch then fruit (bananas usually for the potassium) for a snack mid morning/afternoon. And a kazillon liters of water. I really don't eat at all! I'm so frustrated!

deleted_user 08/10/2012

I saw my Dr today and he is also referring me to a surgeon to see about weight loss surgery. I am not sure how I feel about it yet, but I know I would rather have weight loss surgery than a shunt.

deleted_user 08/29/2012

@ERINRN80 . I have done alot of research on PTC and weight b/c I was diagnosed with PTC in Sept of 2009 and told that it was my weight. Since I have been battling obesity most of my life, I found it hard to believe it was a cause, however, I did come across some case studies that did support weight loss as a resolution in many cases. I also read that it can be because of an increase in the intra abdominal pressure, usually due to belly fat. My insurance does NOT cover weight loss surgery anymore so I am on my own again. I was doing well. I weighed 275 lbs at diagnosis and I am only 5'1" tall. After 5 months of diet, cardio, and weight training, I lost 55 lbs and everything was getting better. I have gained weight again and the symptoms are back and more active so I believe the weight gain has contributed.

notsurewhat2puthere 08/29/2012

I've lost 60 pounds on my 'own' eating right and working out as much as I can, And my symptoms are getting worse not better. My insurance pays for the surgery gastric bypass or the lapband but I really rather have a shunt.

silvertaurus 05/25/2013

I have struggled with PTC, on and off, with different levels of severity, for 10 years. Very large weight loss has been successful putting it into remission, but it always came back with regain. I had gastric sleeve a month ago and my pressure dropped (symptoms almost completely went away) almost immediately. I wondered if it was that my abdominal pressure went down from having so much stomach removed from my body, plus gall bladder out, plus so little content going through me.

WLS is a tool, but it is also shown to give you the best possible chance to maintain your weight loss (a and keep PTC in remission) than any of the weight loss options.

Sleeve surgery will not cause complications with getting (or keeping) a shunt. I read an article on it, but I don't remember the title.

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