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Adult brainstem tumor

From: Dona Ross
Email: donarich@earthlink.net
Date: 04 Jan 1999
Time: 16:29:53
Remote Name: ip98.fort-myers3.fl.pub-ip.psi.net
Remote User:

My story

Let me tell you my story and you may be encouraged at life. First, I am a 44-year-old woman, wife, mother who has a tumor in my brainstem and cerebellum. I had many left-side neuro deficits at birth -- but born in 1954, there were no MRIs or CTs. My head hung far to the left at all times. My left eye was extremely photosensitive and teared constantly. I threw up endlessly (this went on for years), and my left leg turned in a bit. No dx despite many neuro consultations.

My mother is an RN. She tells me she was finally told to take me home and enjoy me, to stop trotting me around to pediatric neurologists. Did the docs know then? No way to know. Could not diagnostically test because medicine hadn't come that far.

So I grew up and grew out of most of my symptoms. By third or fourth grade my head was pretty straight.My athletic prowess over the years improved from zero to darned good.

Then in 1997, playing tennis in the extreme Florida sun, on asphalt at 5 p.m. no less, something happened. It was probably a hemmorhage of the tumor. Sudden vision problems, nausea, vertigo. A month later, after an MRI and a dx of tumor in left pons, medulla, cerebellum and the 4th ventricle, surgery. A huge surgery, craniotomy/laminectomy. The tumor was typed by the pathologist as juvenile pilocytic astrocytoma, low-grade. Yet, in 5 months, it grew to be bigger than pre-surgery. So I had radiation. No more growth; it's been 9 months as of 1-1-99.We continue to monitor.

Hard to know what will happen. Statistically, my tumor type has an 80% chance of 5-year survival.

But a tumor in the brainstem usually results in death in a year or two at best. Which stats pertain in my situation? It's anybody's guess.

The point is it doesn't matter too much. Each of us is given the present to live in and none of us is guaranteed a future. Sure makes you appreciate life, though! My life is so much more real today than it was before the diagnosis. My husband and I have a daughter, 5 years old now, who is my reason for being here.

So I can't go yet. Besides, I may have many good years ahead of me, despite the tumor. I'm glad I didn't live these past 42 years knowing that this thing is in my head; it would have changed my whole life. I will, formy daughter's sake, try to be as normal as long as possible until I can't anymore. May it be a long, long time! And I do my crying when she's not around.

I am such a better person now. I have had to give up my job. We live on much less money now.

egor

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Email: beta@gagmail.com
Date: 06 Apr 2008
Time: 06:33:06
Remote Name: 195.225.178.21
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Email: omega@gagmail.com
Date: 08 Apr 2008
Time: 10:48:26
Remote Name: 195.225.178.21
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Email: delta@gagmail.com
Date: 09 Apr 2008
Time: 08:17:47
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Email: beta@gagmail.com
Date: 10 Apr 2008
Time: 00:37:09
Remote Name: 195.225.178.21
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Email: alfa@gagmail.com
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Time: 19:09:19
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