I take it once a day. Yes, I've had my levels checked. It's low. No, it's never been increased it. Which is fine with me! I I feel enough like a zombie……
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I'm usually exhausted by the end of the day. My short term memory stinks. (I don't know if that's from the phenobarbital or the surgeries…..) I can be irritable at times. I believe, though, that I'm not any worse off than most people! It's important to have a positive attitude. I won't let the past interfere with the future. I'm going to reach out to @jakedduck1.
Actually, I had five different brain surgeries between Oct – Dec 1992: 1. Ventriculoperitoneal shunt inserted. 2. Stereotactic craniotomy. Diagnosed with an intraventricular piloytic astrocytoma 3. Ventriculoperitoneal shunt removed due to infection 4. Insertion of external venriculostomy drain 5. Stereotactic fenestration of the septum pellucidum. Was then treated for unilateral hydrocephalus. My recovery was going great until 2014. I had another grand mal seizure. After being seizure free for over 21 years! I saw a doctor at Mayo Clinic and his diagnosis was: head trauma, brain surgery and/or scar tissue. I'm taking 30mg of phenobarbital a day. That seems to doing the trick. Thank you for asking.
The 1st doctor wanted to get a biopsy of the tumor. They would need to insert a needle into my brain to get that sample. When the pathologist said I could die on the table, I could be paralized on my right side, I could have an eye problem, speech problem or a short term memory problem, I freaked out. My doctor them gave me the option to see someone at Mayo Clinic. Of course, that's where I went. The doctor there was 99% sure the tumor was benign. I ended up having a stereotactic craniotomy. The tumor was benign! My doctor said any microscopic pieces left behind should flush out in my spinal fluid. I ended up developing hydrocephalus, so I ended up back at Mayo Clinic. Had three more brain surgeries followed by antibiotics twice a day for three weeks.
Like I mentioned, do your homework. Get another opinion. Surgery should only be done if it's the last resort. Limit your driving. Better yet, stop driving for now. Can you take something for the nausea? Please don't rush into having surgery. It just sounds like there's still a lot of unanswered questions. Thanks for listening…..
Just being told that you have a brain tumor is scary all by itself! You need to find out as much as you can regarding this type of tumor. Ask alot of questions. Like have either of these neurosurgens ever operated on a brain tumor located on the opitc nerve? We're talking about your brain! This is very serious. Please don't jump into having sugery, just becuase that's an option. Research. Educate yourself on brain tumors & brain surgeries as much as you can. American Brain Tumor Association (abta.org) is a good starting point. I had an intraventricular pilocytic astrocytoma. I'm a 27 year survivor!! Let me know if you have any questions. My thoughts & prayers are with you…..
In 1992, I was diagnosed with an intraventricular pilocytic astrocytoma. The tumor was located inside my lateral ventricle. Basically, the center of my brain. A doctor at Mayo Clinic, Dr. Patrick Kelly, successfully removed the entire lesion. Dr. Kelly isn't at Mayo Clinic anymore. From what I've gathered, he's retired, too. Here I am, 27 years later, still going strong! I would get a second opinion. If you haven't already. Or maybe your daughter's neurologist can refer her to someone. That's how I met my doctor. Keep me posted.
Years ago, I was friends with another brain tumor survivor who experienced hallucinations after having an awake craniotomy. She either had a grade II or grade III, I don't remember. I can't even imagine being woken up during my brain surgery!! I had an intraventricular pilocytic astrocytoma. My surgery dates back to 1992. Overall, how are you? Is this a wait & watch? Please keep me updated. Thanks.