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Multiple, Large Meningiomas

Published on April 23, 2015 in Share Your Story


Multiple, Large Meningiomas


March 2015, after much procrastination I returned to my ENT doctor because I had non stop head pressure, ear aches, headaches and stuffiness on my left side that I thought were all due to my troublesome sinus. I had sinus surgery 6 years prior and was convinced that I was going to need surgery again. The ENT thought my sinuses looked really good in the office but, since I was complaining of so many symptoms decided to do a CT scan of my sinus. On my return visit to review the scan He said that they found some tumors. He then ordered an MRI of my whole brain which should 20 Meningiomas, including several large ones. The largest was roughly tennis ball. This one alone with several other large ones sit in the back of my head in the cerebellum.

I have since talked to a couple neurologists and have seen 2 neurosurgeons, with vastly different approaches. I went to the Mayo Clinic in Rochester, MN for a full review. I was told that I would go blind in both eyes because of different sets of tumors cause problems for each eye, separately. But, there are tumors pushing against the 4th ventricle as well as some causing potential problems with the blood flow to my brain.

It has been recommended that I have 3 surgeries. The first two surgeries would remove several tumors from the back of my head. The third would be to remove some larger ones on the front of my head. It is then recommended that I undergo radiation for some of the remaining rumors.

I am scared. I am a wife of 23 years with three kids. I am a sister, a daughter and an aunt. I live in the mountains. I love to hike, ski, camp and everything Colorado. I am healthy today. Besides a lot of headaches, (which I have had my whole life), head/sinus pressure, ear aches and bad vision (which I thought was unrelated) I am not suffering too badly.

I am scared of the unknown and what ifs: What if I loose my sight in surgery? What if I loos my coordination and balance? What if I don’t make it through surgery? What if I have damage to my brain? What if I don’t remember my kids, my husband, my life? Will I have to shave my head? What if I do nothing and all of these things still happen? I have a special needs daughter that needs a lot of care. What if I can’t care for her afterwards?

I am grateful. I am grateful that we found them and can treat them. It is hard to live with the knowledge. But, I think I can do this. I wish the tumors were gone. But, since they are not gone and are with me – I am glad that I know and can do something about it. I did not choose this. But I think I can do this!

Opinions expressed within this story belong solely to the author and do not reflect the views or opinions of the National Brain Tumor Society.

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