I began having complex-partial seziures about 3 years ago. They were misdiagnosed as panic attacks. My PCP finally sent me to a neurologist this September. He diagnosed me with an epidermoid cyst. I saw a neurosurgeon for the first time yesterdy. She gave me some BAD NEWS. I have a massive brain tumor that is going to require MAJOR, high-risk brain surgery. They are going to have to remove the right half of my skull, my right eye socket, and most of my cheek bone to get at the tumor as it is growing on the base of my skull. The surgery will take a minimum of 10-12 hours. Surgery is the only option. Radiation & chemo have little to no effect on my type of tumor (epidermoid cyst). It is not membrane bound. My neurosurgeon says that it is the consistency of instant mashed potatoes. White, waxy flakes that are very sticky. My own personal tumor is gigantic. She has never seen one this big. It completely surrounds my optic nerve, my carotid artery, and several other major blood vessels. There is a 0% chance that she will be able to remove the entire tumor because of where it is located and a 100% chance that it will recur. I get to do this all again sometime down the road if I survive this time. The risks involved include a low possibility of blindness and/or death and a moderate to high probability of stroke. There is also the chance of personality changes, memory problems, and weakness on my left side. Yippee!! After surgery I will be in the ICU for 1-3 days and then remain in the hospital for several days following. The biggest concern after surgery is brain swelling and infection. Aseptic meningitis is a possibility. The minimum recovery time if everything goes perfectly is 6 weeks. I am scared to death. I really am beside myself at the moment. I just found out about all this yesterday. I had to leave school today. I just couldn't take all of the people. I know that they mean well but I would lose it every time somebody would make me repeat the diagnosis. I guess I'm just wondering if anyone has any advice for me. I have found doctors at Duke & Johns Hopkins that accept my insurance and I think that I'm going to go to either or both for second/third opinions.
I'am currently at Seattle Childrens hospital. My sister has the same condition you have. She was diagnosed at age 7. Had her fist surgery through her nose, and they were able to take about 75% of it off. At age 13 it came back and this time more aggressive, so they opened her skull and removed as much as they could. She lost complete vision on one eye and lost function of her being able to controll her hormones. She has to take medication for life. Now a year later at age 14 here we are again. She is currently having surgery. This time the insecion is going to be deeper and they are planning on taking off the Capsole of the tumor so it stops growing. Ofcourse each surgery gets more riskier, so I totally understand your fear.
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