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bamagirl89 04-29-2012 10:47 PM

New and have questions
 
Hi,
My name is meg and im 22 yrs old. I was diagnosed with PTC 4 months ago and it was a shock! I have really bad migranes and losing my vision especially in my right eye. Ive had 2 lumbar puncutures and it hasnt helped bc the fluid and swelling keeps coming back. So I come off all the medicines that supposedly cause this problem, but its gettin worse. So now the dr is telling me its the weight that is the problem. That if i dont lose weight, ill go blind!:eek: I think it cant b jus the weight, bc i kno alot of ppl who r over weight and dont have this problem. So i go back to the eye dr n a month and trying to lose 5lbs b4 then, and if the swelling and fluid hasnt gone down im goin to see an eye specialist. Im getting really frustrated and worried bout my vision. :confused: has anyone been told its their weight and lost weight and the PTC got better? Or do i need to go talk to eye specialist bout surgery?
Plz help me!!!
meg

Darlene 04-30-2012 02:07 AM

Nice to meet you!!
 
Meg,

:Wave-Hello:Hello and welcome to NeuroTalk. Happy to see you have come to be with us. Here are a great number of dear friends to listen when you are in need of ears. You will find out we are supportive and relaxing place.

Again welcome, looking forward to seeing you around. My thoughts and prayers are with you. :smileypray:

Darlene :hug:

Dejibo 04-30-2012 07:09 AM

Hello and Welcome.

I have bouts of Optic Neuritis and it makes me crazy, but I dont have what you have. I am hoping that others chime in and help you with answers. I do know many MDs if they dont know the answer will often times look at other factors such as weight, smokers, no exercise and the like. Even without a disease process going on, its good to trim off some weight so there is less struggle on your heart, bones, joints, and back. aim for small reasonable goals. go for 5% then 10%. Pick up your activity and start finding reasons to stand rather than sit.

There are many good plans out there if you want help. Some will drop meals off at your door (nutrisystem jenicraig ) and others you fix your own foods like Atkins, weight watchers, and the Swank diet. I am on the makers diet and feel ten times better since cleaning the junk out of my pantry, and I even feel well enough to walk 3 miles with MS!

On my blind days I take my cane, and count my steps. There are blind societies in each state. If you need help, please have your eye MD contact them for some orientation training. That way you will learn the tricks of navigating your own neighborhood with or without vision. I was amazed at how many things I never knew or noticed about my own neighborhood. Learned loads of good stuff from them.

bamagirl89 04-30-2012 12:10 PM

eye surgery for PTC
 
I went to the neurologist today and she says that it isnt my weight that is causing this problem. I need to lose bout 20lbs, but even if i had gastric bypass and lose the weight the fluid will not go away. So now im havin my 3rd lumbar puncture and sending me to a neuro eye specialist to talk bout a fentration surgery round my eye. It relieves some of the pressure round the eye. I was wonderin if anyone has had this kind of surgery and if it helped and what the risks and down time is?

bamagirl89 04-30-2012 06:38 PM

psuedotumor cerebri treament
 
hi i have psuedotumor cerebri and have tried medications and came off the med that supposedly cause this problem and its not better, but worse. im goin wed to have my 3rd spinal tap, bc the pressure is so bad and i have horrible migranes and vision loss and the longer the eye goes swollen the more permanet the damage is. Then June 11 im goin to see a neuro eye specialist to talk bout other optoins like eye surgery that is called a fenetration or decompression to relieve the pressure. has anyone had this surgery or any other options to try? the fluid just keeps comin back and buildin up... plz help!!!

meg


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