Beth's Story

by Bethany
(Cincinnati, Ohio)

My daughter Olivia has a rare form of masses that gives a high alarm for a possible brain tumor. She has multiple sacs inside the pineal gland and she also has “cyst areas” scattered throughout her frontal and occipital lobes. The spread itself is consistent with a brain tumor because a cyst doesn’t spread.

How did I find out that Olivia had the cyst? Olivia has severe speech and emotional problems, and I have been trying to get an answers why. Her head circumference is in the 99% of her age group so they sent her off for a MRI of the brain to see if there was possible fluid buildup around her brain. Then I got the call from the doctor that I needed to set up an appointment with a neurosurgeon and a neurologist. Some tests I've encountered are an ophthalmologist to check for brain swelling, endocrinologist consults to check for early puberty, multiple MRIs with sedation of the brain and spine, and a psychologist for Olivia and I to see how we are dealing with the situation.

We still have to go through tri-monthly MRI for the first year to watch for growth. The doctors still have no determinations whether it is a brain tumor or a cyst because we are still pretty early in the evaluation. They do not want to biopsy the mass because of the location and the risk of possible brain trauma. So we have to watch and see.

Comments for Beth's Story

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Jan 04, 2011

Hope
by: Anonymous

If it is any consolation to you, I have personally gone through what seems to be what your daughter has gone through. All throughout my childhood I grew up with a larger head, but the doctors didn't make anything of it. I also went through puberty at a very early age, much sooner than my peers. It wasn't until I was 27 when I suffered a grand-mal seizure and was admitted to the hospital that they discovered that I have a cyst in my brain. It was explained to me that the cyst is the cause of my head being enlarged, and also the cause of short-term memory issues I have experienced.

So if what I have experienced is essentially the same as what your daughter has gone through (is going through), you may have consolation in the fact that they did not find a brain tumor when I went through testing. Also, they ultimately implanted a shunt to decompress the cyst, and there have been no complications so far since the shunt was implanted.

I wish to you that my story brings hope to your daughters situation.

Jun 10, 2009

Thanks for sharing
by: Anonymous

Thank you for sharing your ongoing struggle with your daughter's health. I'm sure it is very hard going through all the uncertainty and worry.

I hope you get some answers and that your daughter's condition improves.

Take care and try to stay positive.

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