Pseudo Tumor Cerebri Diaged in March 06

[mom of many 0]

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.

[mom of many 0]

Maybe this question is for you? please advise if you have any information regarding Psuedo Tumor Cerebri.

Any info would :help:

[ralheit 0]

I've never heard of this. Best of luck to you.

[Lab Rat 0]

I too was diagnosed with PTC. I was 23 years old & overweight. Taking the medication was a relieve from the headache pain but the side affects were not fun. Sense of taste was off (not so great for a person who needed food!) and I would occasionally get dizzy. The Nueologist who finally DX'd me said that I had all the classic signs. Overweight, female, young.

Never had symtoms again even though weight has gone down and up dramatically since. I was told at the beginning of treatment that the course of meds would probably only be 6 months. Are your doctors saying you need meds forever? I would ask. I did not lose any weight during my treatment.

Good Luck!

[vinesqueen 2]

Hey MoM. I have found that being banded had helped my edema problems, but they don't sound as bad as what you are experienceing. I'll have to research the headaches you are talking about, as per your other headache thread.

I was dx with Cushing's after being banded. Nothing I did with my band helped me lose weight, but because I wasn't willing to give up, they found out what is really wrong with me.

Never surrender! Never give up! This will probably be beyond Dr.C's excertese. Are you seeing an Endo for this, or is this strictly an neruo thing? Has it thrown your hormone system out of wack?

[mom of many 0]

I'm seeing a 2 Neruo's and reg family doctor, Eye doctor (reg and opthomologist, The Edema is in spine, skull and plapiladeama on the optic nerve, and I could go on and on..... lol

Noticed that my vision was going (white spots in center vision with all the other junk that goes with it. That was how it was found. Heck! IO though I had a stroke!!! Yikes......

I have been informed by the doc's that the meds will continue as is

F O R E V E R unless I 1. lose the fat!! 2. things get worse and other surgery options would be discussed at that time. God I hope not being I have never ever had surgery for a dang thing in my life, or been hospitalized for nothing except this darn thing. Even had all the boys at home.

Thanks so much for the replies, maybe this will help other that might not have a clue.

Looking forward not back

[IsabelSofia 0]

My friends mom has it (she's not banded) and she does have a shunt. Sometimes she gets blurry vision and headaches and they do lumbar punctures and this helps her some. They are always thinking her shunt has clogged and she has had so many radiology visits. I'm so sorry that you have to deal with this but you seem to be going about treating it well so you will do fine. My friends mom is about 40lbs overweight but I had no idea that losing weight could help put it in remission.

[Boo 3]

Wow!

How do they diagnose this problem if there is no mass? Unfortunately, I have much experience with brain tumors, but don't know if that is of any help to you.

I'm so sorry you have to go through this! Getting a shunt is not really that bad. I know it is terrifying to think about, but it can make a huge difference in how you feel. Dealing with excruciating headaches, dizziness and any other symptoms you are plagued with is MUCH worse than the surgery!

I hope you can find some helpful information!

[mom of many 0]

Because no one really know whats the cause or the cure they are telling me that some that have lost weight go into remission. I am about 80 lbs over weight and it needs to come off. I'm hoping I'm killing 2 birds with one stone, so to speak. If I can get rid of one demon (the weight) maybe the other will go to sleep cause he wont have no one to play with!

[mom of many 0]

Boo,

The diagnosis is done though eye exams, dialation, and or symptoms, its an exclusionary diagnosis, meaning an MRI must be done to rule out a mass (brain tumor). Then a spinal tap is done to check for pressure. The level of pressure in the spine I was told is around 20 lbs (I think pounds) and Mine was just above 30 lbs. Draining the excess gave instant relief for the time. Now the meds keep it under control. Don't let them waste your time and money on an CT scan, doensnt show whats needed, Have the MRI. Other complication with advanced cases is dialation of the blood vessels in the brain, (which I had) seems to be getting back to normal now.

I"m been telling my family for a long time that if they dont stop stressing me out my head would explode. LOL I didnt know how true that was!!!!

[OLIVIA 0]

I too have been diagnosed with PTC. I went in to the eye doctor to get new, hip glasses and walked out with an appointment with the neurologist. I saw the neurologist, had an MRI and things kind of got to a stand still. At my check-up, my pupils were dialated again by the eye doctor and she said that the swelling of my optic nerve had not gotten any worse. I too am the same as most who are diagnosed: overweight, childbearing age (i was also taking birth control which sometimes PTC is a side effect of birth control pills i've been told) and obviously female. I've been told that losing weight could help drastically which played into me deciding to get the band. I want no one operating on my eyes or sticking anything in my spine. I'm continuing to check in on my eyes but am on no medications. If losing the weight doesn't help the problem, I'll be seeing another eye doctor. Good luck, i was so happy to see this post and that I wasn't alone.

[REEIZBOOJE 0]

Hello, Mom of many, I also have or had psuedo tumor, I saw a neurologist and an opthmalogist, I was diagnosed with this maybe 3 years ago, I had the Lumbar where they removed the Fluid, the dr, said he removed a lot of fluid, but the fluid immediately starts to come back. (I didn't like the LP) I took the diurectics for a short period of time. What I did immediately was start losing weight, as this is the only thing that can reverse this, I also had the lapband and have lost about 50lbs all together. My headches have disappeared, I don't know if it's gone yet, but I'm hoping with my next appointment that it will be gone. Did you know that a person could go blind from a psuedo tumor? this blew me away.....I suggest the lapband, I prefer this anyday overthat lp. This PTC is what helped me get an approval for this lapband.

[mom of many 0]

Olivia,

Don't let it go, get regular check ups with the eye doctor. My BP at time of Diagnosis was 185/165 YEA I KNOW I was stroke waiting to happen. The blood pressure was a direct effect of the Fluid build up. I'm so happy that you are not on the MEDS and your not alone ever!

Looking forward not back

[mom of many 0]

Sherita,

Blind is what I was, well almost thats what made me seek a doctor. My lap band is scheduled for 9/14/06 One month away. I'm excited about it and hope that the loss of weight will take me off the meds that I have been on for now almost 5 months. My understanding is that it doesnt go away completely just to remission. I can deal with that!

Go to sleep lil demon!! The lap band may be the sleeping pill needed to get this under control. It's wonderful to hear that weight loss could be the key. I"m willing to give it a go and this time for good.

Looking forward not back

[mom of many 0]

Sherita,

Congrads on the 50 lbs. You inspire me to do great things.

Looking forward not back