This blog started out with me trying to fight (what was diagnosed as) Chronic Fatigue Syndrome by having a healthy lifestyle. I also wanted to lessen my carbon footprint in the process. My plan was to chronicle the changes I made in my life to "save myself and the planet" (which was my old title). A few months after I began this blog I was diagnosed with a brain tumor. It changed the direction of blog, so I needed to change the title.
Wednesday, January 14, 2009
3rd opinion
I finally got all my medical records, MRIs and tumor slides sent to a neuropathologist at Hopkins (Dr. Burger). I have read that he is pretty much the best at diagnosing brain tumors in the country. I called his office today to make sure they received everything. I had no idea that I was calling this doctor's direct line. I felt intimidated my talking to someone regarded so highly. Yet after a few semi-inappropriate jokes I realized he was a regular guy. He explained that he just got back from vacation and had a pile of files on his desk. I began to worry that getting a diagnosis would take much more time. I guess my story about having two different diagnoses intrigued him. He said he would look at my slides and call me first thing in the morning- "Yes" I thought, I got pushed ahead on the list. He called me back within 30 minutes to tell me that he agreed with Sloan Kettering (opinion #2). He went into minor details explaining his reasoning. Thankfully I have a general medical background from school and that I have done extensive brain tumor research, so I understood most of what he was saying. The diagnosis sounded logical how he described it. He wanted to know if the surgeon got all of the tumor out. I have my first post-op MRI on Friday and he wants me to call him back with the results. He explained that there is no medical reason for him to know, he was just curious. I found this amusing, but then I realized that since a DNET diagnosis is so rare that it is mainly seen in research activities. Thinking that I was born with this tumor is strange. It almost makes me want to go back to all my grad school professors and say "Ha I completed your 85 credit Masters program with a brain tumor." But I would never dare. I also think of the "odd" things that I have been going thru physically for years, it adds up. I am unsure how this new-ish diagnosis changes things and if it even does. I know that the likelihood of the tumor returning is lower now. Since there is hardly any research on this type of tumor I am suspicious any information I receive.
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