The doctor that first diagnosed my tumor is an ENT (ear nose and throat doctor). He was very nice and apologetic that he could not help me more since obviously tumors in the head were not his specialty. He suggested I find a neurosurgeon right away. Once I informed my family, my step-mother (which is part superhero) went to work calling every doctor she knew for suggestions and eventually every neurosurgeon's office she could find. Eventually a neurosurgeon himself picked up the phone. She explained to him the situation and he was kind enough to say that he had a cancellation for the next day and he could fit me in. Imagine our relief!
I arrive with my mother and my father to the consultation. The doctor walks into the consult like if he'd been having a very long day. It was 10:00 in the morning but I thought the poor doctor was probably just a little tired. We ask him if he wants to take the film or the CDs to view them before he speaks with us. He says that won't be necessary and he proceeds to pull out the films and examine them. As he's viewing them I tell him that I have a lot of pain in my neck. He says, "your neck is perfectly fine you have nothing there." (We now know the tumor extends pretty far down my neck.) I then inform him that I have something in my ear. The ENT had become alarmed when he took a look in my right ear. The doctor then looks into my right ear and say, "Oh, I have no idea what that is. I've never seen anything like that before." He then continues flipping through the MRI films and sees on the film whatever it was he was looking at in my ear and says, "Hmmm, that's probably something completely unrelated." (We now know that the tumor extends out into the middle ear, and it is very much related - it's all one large tumor). Then he stops on one of the slides and says, "Oh, it's huge, yeah you're really lucky that your eyeballs aren't popping out by now." Upon seeing another slide he says, "No, there's not a surgeon in the world that can take this whole thing out and if they tell you they can, they're lying." (He was right about that). Then he continues, "But, we could take out part of it, I'd have to cut your face though, the scars would be pretty bad." Just as I'm thinking that this doctor couldn't possibly have such terrible bedside manner, he says, "Do you have any plans for the upcoming year?" When I tell him I'm getting married, he says, "Oh yeah, no you would look horrible, we definitely can't do a surgery." By now I'm wondering where the hidden camera is located. My parents were in such shock that I think their mouths might have actually been open.
Then he tells us that I might be a candidate for cyber knife. Cyber knife is a wonderful relatively new treatment for small tumors. It sends a very targeted beam of radiation to the center of the tumor causing little or no damage to any surrounding tissue. Only three sessions are needed and there are no side effects. After everything the doctor had just told us, we were elated to hear that the solution could be so simple. The doctor then had one of his colleages which works at cyber knife come over to take a look at me and my films. He agrees that we should proceed with the cyber knife treatment.
Once the cyber knife doctor leaves we ask the neurosurgeon if he would like a copy of the MRI films. True to his style of consult thus far, he pulls out his iphone and says that he's just going to take a picture of two of the films and that was good enough for him.
We leave not really knowing what to make of the situation. I was just happy that I got in front of a neurosurgeon. It seemed there was a plan in place that would involve no pain, no side effects, no nothing. I was going to lay on a table for 1 hour three times and I was going to be all better. Sounded like a plan to me. My dad on the other hand was like, "I don't know, I didn't really feel comfortable with this doctor." He pointed out that most doctors would take the time to review the films privately. This doctor literally was thinking out loud in front of his patients with zero consideration for how what he was saying was going to sit with them. I couldn't help but agree with my dad. When I replay that consult in my head, I find it hillarious. This poor doctor obviously missed the bed side manner day at medical school. I don't think he realizes how his "style" might affect some of his patients. To be fair, this was the very first neurosurgeon on the case. The neurosurgeons that followed had the benefit of multiple doctors eyes and their oppinions. My original report from the MRI that the ENT had ordered was a misdiagnosis. It said I had a meningioma that was 3 cm (a small benign tumor). Meningiomas are tumors that people often live with their whole lives and they don't always require any sort of intervention - surgical or otherwise.
Now we know that I don't have a meningioma and that unfortunately the appropriate treatment was not cyber knife. Everyone's heard that second (and maybe thrid, fourth and fifth) oppinions are very important. In my case, that couldn't be more true. But I'll never forget the first neurosurgeon I saw. I now affectionately refer to him as Dr. No Bedside Manner. At the very least, he provides comic relief to a pretty tense story.