pseudotumor cerebri

Pseudo meaning "false" basically pseudtumor cerebri is a disease that mimics a brain tumor without an actual tumor being present. in my case I had excess spinal fluid built up around my brain so bad it was crushing it. I had many seizures, was on MULTIPLE medications, and pregnant on top of it all. I found out I had pseudotumor WHILE i was 3 months pregnant which made treating me very difficult. I had 1-2 spinal taps a week every week for the last 5 months of my pregnancy. I spent a lot of my pregnancy in neuro ICU and almost lost my baby at 25 weeks gestation. If I didn't have surgery, i would be blind by Christmas of 2010...it quite literally came down to the fact of the doctors saying "What do we do? Do we save mom first or do we save the baby?" yes, it was that bad especially when I had seizures.

Category:

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Tags:

• blind
• papilledema
• pseudo
• tumor
• brain
• mri
• seizures
• keppra
• ICU
• neurologist
• neurosurgeon
• Pittsburgh
• Pennsylvania
• West
• Penn
• spinal
• tap
• pregnancy
• diamox
• steroids
• hospital
• back
• surgery
• shunt
• headache
• numbness
• tingling
• hypertension
• pressure
• ringing
• ears
• pulse

[tjn21rawr]

hi.. my name is tanya... i have this also.. im too scared to have the shunt.. im 21 and i found out i had this at the age of 16 i had been suffering since i was 13.. in 2006 i spent 3 days in the hospital for tests thats where they done my spinel tap..and they came to hte conclusion i had this i can hardly see my head hurts 24/7 some days are better than others but its hard i have a 9 month old daughter. and im scared im not goin to see her grow up should i get the shunt??

[MissJessLC]

@tjn21rawr I would most definitely get the shunt only if you're doctor sees it fit. As with anything though some things are best if you leave well enough alone. Sometimes the shunt can do more harm than good. All of us that suffer from this disease have different symptoms at different severities. thats why I say get the shunt if your doctor thinks it's beneficial to YOU. I'm one week post op. I'm on my 11th surgery for shunts since 2010, but I have other health problems. Best of luck to you!!!!

[Brittydragon]

Thank you for sharing your story. More people's voices need to be heard. I hope you are doing well , at least for now.

[MissJessLC]

@Brittydragon Thank you so much. I'm only a week and a half postop and have been following your videos since before I had surgery. It helps to know that your not alone in all of this :)

[ThePurpleGekko]

@tjn21rawr Woah this is so cool im 14 and have this had it for two years and totally relate to all this also ive had tons of spinal taps and seem to help for about a month then i usually need another one and i dont know if i should get the shunt or just grow out of it because you can by the way so ya

[MrJohnny2867]

HAD IT DONE BACK IN 2001 AT BASCOM PALMER EYE INSTITUTE IN MIAMI!! DR. DAVID TSE DID MY SURGERY ON BOTH MY EYES!! I THANK GOD EVERYDAY THAT HE HELPED SAVE MY EYESIGHT!! BASCOMER PALMER(MIAMI FLORIDA) IS THE #1 EYE HOSPITAL IN THE U.S. AND PROBABLY THE WORLD!!! THANK YOU

[MrJohnny2867]

HAD IT DONE BACK IN 2001 AT BASCOM PALMER EYE INSTITUTE IN MIAMI!! DR. DAVID TSE DID MY SURGERY ON BOTH MY EYES!! I THANK GOD EVERYDAY THAT HE HELPED SAVE MY EYESIGHT!! BASCOMER PALMER IS THE #1 EYE HOSPITAL IN THE U.S. AND PROBABLY THE WORLD!!! THANK YOU

[alabamaroll]

omg i had a shunt put in my back just like yours andi know how you feel i had all the thing you had done im so happy your feeling better(:

[xXfoxridersXx]

when i was a baby i would cry from my headachs. when i was four we went to the docters in L.A. cause my headachs were getting worse. they diagnosed me with tpseudotumor cerebri. :P when i was five they put the vp shunt in me. it helped so much. plus ive been blind in my right eye since i was a little baby. [i have a lazy eye sometimes and people make fun of me] now i just have a little bump on the right side of my head and a little scar on my stomach ;] now im 14 and happy ;D

[Brittydragon]

@darryllnlaura Thanks I love that we have this community where people understand what we go through. I make myself smile and laugh a lot because if I don't all we go through is just too depressing.

[Brittydragon]

@MissJessLC aww thank you that is very heartwarming to hear. You take care it helps me to know I am not alone too.