Recently I got a letter from the administrator of my health insurance concerning my visit to the emergency room when I had a heaache and I had lost movement in my arm. I took a deep breath and made the call. From past experience, I know it's best to call immediately and answer all the questions.

I gave all my identifying information to the customer service representative, and then she asked about what type of neck pain I had when I went to the emergency room. I explained to her that I actually had a headache and couldn't move my arm, so I called my doctor's office and was told to go to the emergency room. I also explained that they did a CT of both my head and neck because I had had an AVM removed.

"A - V - M?"

"Yes. A, V as in 'Victor' and M as in Mary. It's short for 'arteriovenous malformation'."

She then asked questions abou the surgery. I explained that it was biopsy to figure out what the mass in my neck actually was, and the mass was "suspicious" for lymphoma because if its location. I then told her that only after it was removed that it was determined that it was an AVM.

After explaining all of that to the customer service representative, she asked, "Did they have to remove it?"

Wanting to yell at the woman but knowing that would not be in my best interest I repeated that it was removed because it was the only way to determine what it was. I wanted to say something to the effect of, "If it were you, would you want to leave something alone that might be cancerous? I think not!"

I answered some more questions and finaly got off the phone with her.

After I settled down a bit, I couldn't be all that mad at her for a couple of reasons. First, I've had doctors say just as ignorant things to me. I told my gynecologist about the surgery, and he referred to the AVM as "nothing." Having known him for a very long time, I decide to let that pass. I also talked to a neurologist at a health fair. She thought that I didn't know what I was talking about when I told her that I had an AVM removed from my neck. She asked me if I was sure that was what it was. I told her that when it was removed, it had been taken to a lab and had been found to be an AVM.

The other reason I couldn't be totally mad is I asked myself after the surgery if it would have been better to have left the AVM alone considering all the problems I had with my arm. But now that I've pretty much regained the movement that I had in my arm before the surgery, I don't regret having done it. My left eye functions much better now. It had been a struggle to go to work every day and use the computer. I would have to get close to the computer screen to see anything, and I went home every day with a headache.

I am amused by the whole incident at this point, but it will continue to bother me that even people in health professions have limited or no knowledge concerning AVMs. Having read posts from other site members, I know I'm not the only one to have had such an experience, and I hope there comes a day that no one who has an AVM will have to go though this type of experience.