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

Update!

As of March 5, 2015 - I have a VP shunt. I went into the ER with a really mad headache, it lasted three days and I simply couldn't get it to budge. So I went in... they did an LP, then transferred me to a network hospital that my neurosurgeon could put in my shunt. I always seem to go big or go home, apparently.... because we went from my NS telling me he didn't really think I had it, to him standing by my bed and apologizing for his error, and telling me about the LP shunt failure and needing to put in a VP. My shunt is holding it's own, and I'm about to go on Diamox yet again. Bleh, it made me so sick last year. I'm so exhausted, and now starting to have some memory issues. Anyway - that's an update on me! Hope everyone is doing okay!

So sorry to hear of your ongoing issues.  Perhaps having a new shunt will be helpful.  Maybe the Diamox will be a temporary fix until they get the shunt programmed to the right setting.  Uh, I do hope they put in a shunt with a programmable valve.  I still take Diamox with my lp shunt, but it's a low dose so the side effects are very slight.

Please keep us informed as to how you are coming along.  Keeping 

Oh Crissy, I'm so sorry to hear you're struggling with this again! You have been through so much, I just hope they've finally found the answer and VP shunt will hold.

Take care of yourself and feel better soon!!!

Crissy I have my fingers crossed for you and I am so hoping that this is a resolution for you. It is good to see you back, please rest and take good care of yourself. I'm looking forward to your posts once you're fit and well again.


Big
Heidi xxx 

Thank you all! The words mean so much right now. I honestly wanted to avoid surgery ever again. The boyfriend warned me that I was going to put it off until I had no option - and sure enough, he was right, that's what happened. Lesson learned. Sometimes, doing things your own way isn't about avoiding what you fear, but facing it head on, dealing with it, instead of letting it take you by surprise - I guess.

<3

Crissy