AVM???

The Whole Story

Here’s what’s been keeping me up at night and away from the blog….

Back in 2004, my dad had an MRI done for some hearing problems. The MRI nearly killed him because he is one of the few people who is allergic to Gadolinium, the contrast dye that is routinely used in MRIs. He survived the MRI, only to be told that he had a brain tumor.

He was sent to a hospital for a biopsy. Just before taking him in to do the biopsy, the surgeon had a CT scan done. He told my dad that he had good news — what they thought was a tumor was actually an AVM. He told my dad to schedule a follow up appointment and sent him home a happy man.

At the follow up appointment, the doctor suggested doing an angiogram. My dad says that he asked the doctor if it was really necessary and the doctor said no. I personally believe that my dad — being an old fashioned sort of stubborn macho man — decided that the test sounded unpleasant and that he didn’t need to have it. I remember him telling me more than once, “I’ve probably had that AVM all my life and it hasn’t bothered me yet.”

So, nothing was done. End of story. Or so we thought.

About three months ago, my dad started having several seemingly unrelated health problems. His left leg was hard for him to move. He was lightheaded all the time. His vision wasn’t quite right. He saw many doctors — ENT, cardiologist, general practitioner, neurologist, and so on — and had many different tests done. Whenever he told me about his doctor appointments, he would say that the doctors said everything was fine. Well clearly, everything was NOT fine because he couldn’t walk, see, or steady himself the way he normally would. Whenever I asked him if he told the doctor about a particular symptom or past problem, he would shake his head and say, “No, it’s in my chart.”

Grr.

As a result, I decided to start accompanying him on his doctor appointments. When we had a follow up visit with the GP, I gave her the whole laundry list of what he had been experiencing. She told us she would call the neurologist that he had seen the week before. That was on Monday (6/30). We got a call saying that the neurologist would see us on Tuesday (7/1). We saw him and he informed us that, after looking at my dad’s recent CT scan and his MRI from 2004, he was of the very firm opinion that what we had been told was an AVM was actually a tumor. He referred us ASAP to a neurosurgeon, who saw us on Thursday (7/3).

The neurosurgeon agreed with the neurologist’s assessment, but wanted a closer look. He asked us to get the CT scan from 2004, and have a current MRI done. That way, he could compare MRI with MRI and CT scan with CT scan.

We saw the neurosurgeon again this past Friday (7/1 and took all four discs of images to him. He believes that we may be possibly dealing with a tumor and an AVM. He ordered a cranial angiogram — the test that my dad could have had done four years ago — to track blood flow and see if what looks like an AVM really is an AVM.

Here’s the tricky part. The location of this thing, whatever it is, is deep within my dad’s brain — in what they call “eloquent tissue” — located on the right side, towards the back. If left untreated, the tumor/AVM could cause a gradual decline in virtually any area of his health/functioning. If treated surgically, it could cause the same effects in less time. For instance, he could eventually lose his eyesight completely if he does nothing to treat it. But if he has the surgery, the occipital lobe of his brain could be damaged and he could end up blind as a result.

There don’t appear to be any good options for him at this point. I’m spending a lot of time these days thinking about what my life will be like without my dad around, and it’s heartbreaking. I can’t even begin to describe how much I will miss him. When I was going through a really nasty divorce, he called me every night to make sure I was okay. When I was in college he sent me goodie baskets with encouraging notes just before final exams. When Dan and I got married, he gave us his whole-hearted blessing and has treated Dan like a son ever since then. When I went to the hospital to give birth to Trevor, he raced up there so he could be there when his first grandchild was born. When I was growing up he never failed to give me great advice, usually in the form of “an old saying.” My dad, at many times throughout my life, has been my rock. I will be lost without him.

I am now a member of “The Sandwich Generation.” It is exhausting, both physically and emotionally. I find myself telling God, Please, not now. I’m not ready for this! But then I realize that I will never be ready to say goodbye to my parents.

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