May is Brain Tumor Awareness Month and one local survivor wants to spread the word about how brain tumors can affect people, even years after they have them removed.
51-year-old Nancy Hueber was diagnosed in 1996 with a baseball-size meningioma tumor in her brain. A week after her diagnosis, she had surgery to get the tumor removed. At the time, her daughter was three years old. Hueber later went on to have a son, Benjamin, but she said ever since, life for her, her kids and her husband has never been the same.
Hueber said she thinks the tumor had been growing for a period of ten years before her diagnosis. She said for awhile, she couldn't see to her left side, had headaches, and neck tensions, but it wasn't until she fell down the stairs after a piano concert that she realized something was wrong. Now, almost 16 years after the surgery, she still doesn't know how she developed the tumor.
From 1996 to 2007, Nancy Hueber and her family adapted to the changes. Hueber said even after the surgery, she experienced random seizures, medicine that was ineffective, and a diagnosis in 2007 of short-term memory loss. Hueber said she has trouble with sequencing, balance and coordination, and her sense of space. Her kids have put reminders all over the house, to remind her of simple things like locking the door and taking her keys before she leaves the house. Just until last year, Hueber said she kept teaching piano, but has had to give that up because she said it was too much for her brain to handle, on top of homeschooling her son.
"Brain tumor patients need to be patient with themselves," said Hueber. "They need to understand that the deficits might be subtle, they may take time to show up, and we may just kind of brush them off as life when in fact there could be something debilitating going on inside my head and families need to be aware of the possibility that their brain-injured loved one has been impaired more than they know."
Hueber said her brain tumor was benign but she said that term is misleading, because although it was not cancerous, it's ever increasing size was affecting the way her brain functioned.
In recent years, Hueber has used Facebook and other social networking websites to meet other brain tumor survivors, especially those that had or have meningioma tumors. She said it has been a huge help because there is not a substantial amount of research available on meningioma tumors.
"Nobody knows an illness like the others that have it as well," said Hueber. "So, it's important to find support, to be able to talk about your struggles, your challenges, and perhaps find other people who are going through it who have suggestions because you can't cover everything in a doctor's appointment. "
Hueber recently returned from a trip to Boston, where she participated in the Brain Science Foundation's "Meningioma Awareness Day." There, for the first time, she met in person other survivors, and learned that dieting is key to reducing fatigue and getting her energy level up. She said she has been on plant-based diet for about three weeks and has noticed great results.
Most of all, Hueber wants people to know that brain tumor survivors look like normal people, and that you may not know right away that they have had a brain-injury. She hopes to start brain tumor survivor support groups here in the Heartland in the near future, as well as use her expertise at playing the piano to perform for others in the hospital, while they are recovering the from the same surgery she went though years ago.