I am now 27, nearly 28 years old.

In my teenage years, I had horrific migraines and constant eye changing so tons of glasses. Chiropractor, doctors, meds... excuses of 'horomones'... no one ever thought to send me to a neuro. I continued to suffer. I also have no thyroid/thyroid tissue [hypothyroidism - congenital], and Epilepsy.

April of 2009, I was diagnosed with a Pituitary Tumor. April 7, 2010, I went in to have the macroadenoma removed. Enough damage was done, that I ended up with Diabetes Insipidus. However, the dura of my brain was knicked in surgery, and CSF began to leak. They did a plain fat patch. 2 days later, I went home. 2 days after that, CSF was running out my nose... I had blown my patch. Another surgery, another fat patch, and, a Lumbar shunt was placed. Home again, valve went in my pump. Blew patch... again, suspected meningitis.... horrible lumbar puncture... started treatment... cultures did not grow anything, No meningitis. Placed a Picc line though [my veins are shot] , another surgery. Shunt fix, repatch. 7 hours after surgery, I sneezed.... blew that patch again. My Neurosurgeon is quite known, and has practiced for over 20 years, I still, remain his hardest patient. Finally, after conferring with his partners, I was diagnosed with PTC/IIH... then, scheduled a double header surgery. ENT Dr would do a 'sandwich' [multilayer, multimaterial] patch, and a new, more agressive shunt was put into place.That seemed to work, and after 3 more weeks I could go home again. However, I went back into the hospital 2 weeks later, thanks to Pneumocephalus [air in brain cavity]. Another spinal tap. That one went bad, too. I had to be drugged and sedated. So my ideals on Lumbar punctures aren't pretty at all, lol!

Oddly, my nurse in the hospital ER had PTC/IIH too... and hypothyroidism... talk about a weird meeting!

Glad to know I am not alone.

Welcome to the group, I am so pleased you found your way to us, and I do hope that you find comfort and support here. Our members are extremely supportive and friendly, and if there is anything you aren't sure of or there are any questions you want to ask please do so.

Oh my word Crissy what a traumatic time you've been through. I am lost for words at just how much you have gone through, and I absolutely admire your strength, determination and attitude to it all, and no doubt through it all.

I am so glad that you now seem to be on the road to recovery although you now have to content with IIH, but we will do our best to help you through the trials and tribulations of it, and make it a little easier for you to live with.

Heidi

Wow Crissy..like Heidi, I have no words. I'm so sorry you struggled so severely for so long! It does sound like they at least have you on the right track now. Hopefully they'll be able to treat other conditions once IIH is under control and your body's had a chance to recuperate. I think you'll find that a lot of IIH patients have multiple and bizarre contributing or secondary conditions..I guess it's neurological, so it's all related. Hang in there and take care of yourself!!!


Julie