Who here has pseudotumor cerebri???

[bethaniet586]

I am just curious to see how many people have pseudotumor cerebri on this forum...?

[jess_79]

to start with I am 33 old female ,about 5 years ago I started with this constant head pressure on top of head and into eyes and forhead ! this happen after my anxiety started after my sister death so I thought it was just from stress ,,but it wasn't going away so I went to regular doctor he says its tension headaches so I said ok went on for nother year still here so I went to a lot a lot!!! of er and urgent cares had a lot of ct scans and eyes test nothing ever came back abnormal so I thought I was losen it at this point well another year passed so I decided to go see a neuro doc he ordered a mrv and mri .came back all clear !....then he said I may have spseudotumour ..I freaked out I didn't no nothing about this ...but I refused the spanial tap now I think I need it :(  but scared ....so my question is could I have this for 5 years ? constant everyday ..and my eye exzams are perfect and I never have pain in head just pressure and I am not over weight I weigh 120 pounds ..seems like its all sinus related hope I may find answers could this still be spseudotunour ?

[tinanevarez07]

Hi My name is Tina im 25 year ago and i have been diagnose with pseudotumor cerebri. been living with it a year already. finally getting treated since before i did not have insurance, it has been hard to live with it. :( the hards part was the losing of my eye site. i havent met anyone with my condition but really would like to meet ppl who lived with it.

[kayladianne]

Hey everyone. I'm 20 yrs old and today I went to the ey DR. and was told that he's 99.9% sure that I have Pseudotumor but i'm going tomorrow for a CT.. i'm so scared! i've never even been put to sleep before.. I need support and comfort, someone please.. i'm in a panic!! reading some stories on here did however make me feel alot at ease and I thank you all for posting your stories up. I'm just honestly scared i'm going to die.. I shouldn't think this way but it's just hard.

[Cath278]

Hi there.I  just wanted to wish you the best of luck on Monday. I had my shunt fitted last Dec and was home within 24 hrs! As soon as I came round from the surgery,I knew things were good.Headaches were gone and eyes no longer blurry. The pain is managable, with some pain killers.The site in your abdomen can be quite sore.Its hard to bend so have every thing ready on the coffee table before you sit down. Sleep,can be a bit difficult, hard to get comfortable but that does not last long. You will be very tired for at least 10 days.Relax if you can and let your body do its job and heal. If you have any questions, feel free to drop me a line.Good luck! Cath278.

[TJRasta]

Hi Mandy,

Welcome to the club.  I too am going to get a VP shunt next week but for me this will be my second time around,  The recovery is really not as bad as you would think,  I was only in the hospital a couple days, some even go home the next day.  I was up and about with in a few days.  I am not working but if I was I would guess that within a what week to 10 days depending on what type of work you do you should be able to go back to work.  A good question to ask you NS.

As I recall, the worst part was just the healing of the incisions especially the one on the back of my head.  Other than that it is not too bad.

I do not suffer any vision problems so for me I did the shunt for headache, neck and back pain and it worked wonderfully untill it got infected and then it needed to be removed.  Mind you that only 3% of the time does this operation result in an infection but I got unlucky.

Not sure of all you syptoms but hope your operations relieves them all.

TJ

[mandik]

i have PTC or the new name its called . In fact im taking the leap and doing the vp shunt on monday Sept. 21,09. Scared unsure what to exspect, will i be able to continue to work, will i have a long healing time.Will i be a freak to my girls , Most of all important question, WILL IT HELP ME WITH MY SYMPTOMS.But i have no regrets, its time i done the shunt , if you ask me 2 weeks past time. Blessings to all. stay in good sprites talk to you all after the surgey.