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Dear Diane Wisdom,
Ditto, you are exactly right. It is true WISDOM you speak! hehehe
Always check and double check the particulars in your own case, each one is going to be a unique treatment that you specifically, or your loved one are going to receive. The critical doses of radiation and time frame they use to deliver it varies from one machine, doctor or institution to another, and from one patient to another. The type of neurosurgery and skills of the doctor and his team performing it, varies immensely as well. And there are massive variations in the types and side effects of medications and treatments you are being given to take for seizures, intracranial pressure, swelling and depression.
I have read thousands of unique situations in emails from you all for the past five years. Location of tumor, location of treatment, and location of doctor have created millions of unique results and situations. Please take the time to find the one YOU can live with.
This is all about the very complex fantastic brain, (YOUR BRAIN, the very essence of who you or your loved one is) ( www.dana.org) These medical decisions are much more important than buying a house or a car, or picking a college or institution of higher learning.
Ask lots of questions! Go AHEAD! hehehe a head, Get it? Remember, there is no such thing as a dumb question! Calmly questioning the status quo has always been considered a sign of superior skill and intelligence. Thinking outside the box is progressive and indicates a highly creative spirit and leads to improved future planning and action. Inquiring minds always want to know more! (www.vitrualtrials.com) Good questions indicate active learning and increased brain activity in human beings! Hurrah!!! Many of us are still ALIVE ALIVE OOO
BT friends I am delighted by all of your questions! I really liked these too from jperras
Are they measuring your prolactin levels?
Are they testing your visual fields? Have they seen any changes?
Are you seeing a specialist for hormonal inbalances?
Oftentimes, we might be initially daunted by all the new medical vocabulary, asking doctors to explain things in layman's terms can be good and a stimulating challange for them too. Please get yourself a copy of the ABTA Primer and Brain tumor Dictionary, (www.abta.org) it will make lots of things much easier to understand.
We have PATIENTS RIGHTS to speak to various medical specialists in neuro-oncology, neuro-opthamology, and neuro-endocrinology. EXERCISE THEM! They must know what happens to all their other low-grade brain tumor patients, long after initial surgery or radiation treatments.
Please politely ask you doctors for longterm results, what happened to their patients from ten and twenty years ago? Where and how are the low-grade brain tumor survivors ten and twenty years later? INQUIRING MINDS want to know!!!
I hope you all have your taxes done today! GOD BLESS YOU ALL as you help me to KOKO Keep on keepin on!
GBYAY AnneMBreen,
PS. Thanks to skilled doctors and advances in medical science, I am still continuing neurologically intact. I am healthy survivor of a 5 cm in diameter benign meningioma behind my left eye seventeen years ago. I had an initial zygomatic orbital approach craniotomy, (that means a big question mark shaped incision from above my left temple at the hairline to above my ear) to remove it in 1986. I was off all the medications in six months. Its unexpected recurrence was reported six years later in 1992 after I had resumed learning in my new regular life. I searched with the online bt community starting in Oct 1992.
I finally agreed to have a second major skull based craniotomy eight years later, along the same incision line in Jan 2000 for a 2 cm by 2.5 cm recurrence. There is still residual (some remaining) tumor along the medial spheniod ridge pressing on my optic nerve and cavernous sinus region causing some blurring of vision and slight bulging of my eye. (Most people don't notice it unless I point it out)
I am not currently on any medications other than a daily vitamin and excedrin for headaches and stress now and then. I took lithium and then zoloft for six months each for depression after my recurrence was reported, then Mifepristone for three years 1996 to 1999 to stop the growth of the tumor, now they have new clinical trials of Mifepristone for depression. hehehe The brain tumor did not stopped me from raising my three kids, working, computing, driving or traveling, but it did completely altered my own life course and emotions. hehehe "Life is what happens while you are making other plans."
I tend to agree with David Gelernter, a Yale computer scientist and author who is quoted in an recent May DISCOVER article by Stephen Johnson about emerging technology. David says, "My life, like your life, is a series of events in time, with a past, present and future." We are all experiencing different things at different stages on our life journey. Stephan Johnson has several recent articles about the brain and our emotions, stress and fear, fight or flight reactions that are often chemically and physically different for men and women. I think they are getting closer and closer to understanding how our brains work. Addiction has chemical brain factors too. So does addiction to love...addiction to anything. hehehe
Millions of people are active participants in virtual worlds like this one, I guess I am an addict to the social networks of our medical email lists too, hehehe. They possess the same real economic value and creative vitality of actual world wide communities. That's real people power and GOD's love and power to me!
In the past ten years, I think the online brain tumor community has contributed an enormous amount to the data base of the entire real world of medicine and science by their email questions, shared information and determined advocacy efforts of thousands of people affected by brain tumors. I think you can search lots of the past email archives by using keywords. Samantha Jane Scolameiro founder of the Healing Exchange Brain Trust (www.braintrust.org) is my personal hero who created this real world online, her advocacy efforts and personal email helped me save my own world and my own sanity ten years ago. THANK YOU SAMANTHA JANE
Well enough rambling thoughts from me for today, pick up the MAY 2003 issue of Discover if you get a chance.(www.discover.com) Lots of fascinating stimulating BRAIN related reading to motivate your brain cells! About DNA genetic discovery, ancient war mentalities, pair-bonding. love and addiction, etc!
GBYAY again, hehehe AnneMBreen
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