Prayers to you. I'm called SHUNT because I have a VP Shunt in my head. I've had a dozen brain surgeries. I've had bacterial meningitis as well as an extremely rare strain of mold in my cerebralspinal Fluid (CSF). I'm the only person in the SoutEast US to have survived this infection. Had you visited me in the hospital during that stint, you would not have recognized me, I was probably hours from death for days/weeks. And yes, I was cognizant the entire time, not in a coma.
I've had leaking CSF, so badly at one point they almost gave up trying to stop it. Glad they didn't. UAB saved my life, a few times. I had bone behind my sinuses essentially dessintegrate from CSF pressure, the size an egg could pass through, so they had to reconstruct that entire area. Many, many, MANY surgeries. This was 2008, and went for roughly 6-7 months in and out of the hospital.
I still have issues with my shunt. It fails. And I've already had it replaced three times since 2008. I just live life. I mean, what else can I do? Right?
Please let me know you just wanna chat, text (hate texting) or whatever. I'll listen or offer advice, or whatever. Sometimes you just want someone who ha had similiar experiences to listen...
Prayers to you, brother.
Thanks for the reply Eric, Honestly kinda feel like i have it great compared to what you have went through.
My tumor is a part of the facial nerve, and has a small extension that goes into the inner ear canal. My doc says that i could possibly have it removed, but the long term effects would not be reversible. I would loose all facial control in my right side, all hearing on that side, would probly end up in more of a liquid diet due to not being able to chew and swallow correctly, and probly my eye on that side over time.
The Gamma Knife procedure was done to kill the tummor, i was of work for around 6 weeks leasing up to and following that procedure. At around 1 year after i was feeling pretty confident that i was making good progress. Now at almost 2 years post op its all went down hill, the Tumor is Swollen, causeing all if my symptoms to be twice as bad as when i went in to begin with. I have been if work for the past 2 months, and am realky considering filling for disability. My doc says this sometimes happens with GN and that i need to figure out how to get through this for a while. He says the tumor is not growing, but that the radiation is doing its thing, and that the short term effects are far better than the long term if i were to have it removed.
I never in my life thought i would consider disability, i have worked my job for almost 20 years, but at this point i am not a reliable employee, hell i cant yawn without causeing spasms inside. My equalibreiom is all kinds of messed up, anyone that knows me, knows that has never been a problem for me. Its extremly frustrating, as ling as im not active i appear fine, but thats not always the case.
Agin thank you for sharing your situation, and truly hope things stay on the correct path for you!!
