Introduction: Hi Guys, I've been... - Acoustic Neuroma ...

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Introduction

mumumelon profile image
3 Replies

Hi Guys,

I've been reading posts, so I do want to introduce myself.

Ten years ago, my lips and side of my face turned numb and my balance was bad. We had cobblestones in our yard which I could only negotiate with great concentration. My husband and I danced often and he was afraid to swing me out. He said, "I feared you'd fly off across the room. Though I did have hearing loss, it was gradual and I wasn't aware of it.

My doctor immediately ordered an MRI, where they found a 3 cm AN. Determined to find good care, since the AN was labeled large I had the surgery done by Dr. Friedman in CA. They could not remove it all, and 3 years later an MRI discovered it was growing again. I then had Cobalt at James Cancer Center in Ohio. The tumor, though, still survived and is now 1.1 cm. It is currently stable. (For the last several years)

I am seldom symptom free. Lots of tongue tingles and my face become numb when I talk on the phone, and also in person if the conversation goes on too long or is stressful.

Mentally, I'm fine. I'm a writer and I own a small inn.

I relate to you all. Every year I have an MRI and I wait and hope the tumor hasn't grabbed a blood supply and started feeding and growing.

Blessings to you all. It is a scary path. But I am grateful that AN is a brain tumor that can be dealt with. In my case, growth would require another surgery.

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mumumelon
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3 Replies
Kristyll profile image
Kristyll

I think you have had a rough time, but hopefully it is now dormant but unfortunately this happens. Is the centre you went for radio like the very tiny lines arm they use at Staten aisland as a few people from here UK got treatment there?

bypass profile image
bypass in reply to Kristyll

Hi Kristyll - Do you mean the Fractionated Sterotactic Radiosurgery (FSR) which used to be done at Staten Island? I was one of the Brits who went there with excellent results. That team is now on Broadway in New York, still getting excellent results - see rsny.org/about.html

mumumelon profile image
mumumelon in reply to Kristyll

It was the one where doctors design a helmet to fit the head and give the patient a long dose of cobalt. Whilst that happened I I lay trapped in an MRI with the helmet and my thoughts. A long time. The helmet prevents the head from moving. The target area must be maintained.

I write whilst because you who replied are Brits. I love the word and have no idea why Americans way while.

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