Wednesday, May 19, 2010

Searching for a neurosurgeon

When I found out on November 13, 2008 that I had a brain tumor, my neurologist insisted that I needed to see a neurosurgeon immediately. He referred me to one doctor and wished me well. I researched that neurosurgeon, noted he was the head of the neurosurgery department at his hospital and then decided to schedule an appointment with him.


He no longer accepted my insurance. He had recently switched from private practice and was only based at the hospital. The hospital did not accept my insurance. Fun.

The search for a neurosurgeon began.

How on earth do you search for a neurosurgeon? It wasn't simple googling. What criteria should I use? How would I even know if this was a good neurosurgeon or not? It was difficult. After some tears (lots of tears), I finally settled on making an appointment with one. I didn't know much about him. However, I was limited my insurance.

I saw Dr T on November 24, 2008. The email I sent to my friends the day after:

Yesterday I saw a neurosurgeon. I wanted to send an email yesterday but at the end of the day I realized I had mixed feelings about what he had to say. He says I am young - very young and he wouldn't recommend surgery right now. Surgery is risky (it's brain surgery, after all) and has several complications (for e.g., chemical meningitis). The tumor has wrapped itself around 2 nerves and is pushing against another. It cannot be easy to take that out. Most likely, some of it will remain. Additionally, the tumor could grow back (yes, I said tumor - that's what it is - epidermoid cyst, mass, nodule are just all names for a tumor). Essentially, he wouldn't recommend surgery until it was absolutely necessary. When is that point? I'm unsure.

Truthfully, I can't remember most of what he said. He gave me the names of two experts to consult for 2nd and 3rd opinions, then recommended another MRI in 3-6 months. That second MRI would give them an idea of how fast it is growing. He also expressed surprise that Tegretol was keeping the pain away. Great.

Fricking waste of money if you ask me.

I am in now limbo, waiting for that 6 month mark to be scanned again or for the Tegretol to stop working. Frankly, I am a little tired of it all. There is the underlying fear that I will wake up one day and again be in excruciating pain and won't be able to eat, talk, wash my face or brush my teeth. Pessimistic, huh? A little. It doesn't help that today I have felt more jabs of pain than I am comfortable with. That's right, my medication isn't working 'perfectly' anymore. Of course it worked perfectly on the days leading up to my appointment. Ha. Everytime I feel a jab of pain I wonder, "Is this it? Is this what the phlebotomist told me about? The day the meds would stop working and the pain would return worse than before?" I don't think about the part where she said I will want to kill myself - I'm not that pessimistic!!!!

That's all

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