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.

Problem.

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

Medical History

I sent this in an email to a group of persons in a support group. It is easier/lazier to just copy and paste. Maybe later I will get more down. For now it is hard as my vision is very poor.

I will try to make this simple/short. In November 2005, as I ate Thanksgiving dinner, I felt a "shock' in my tooth. It happened only once but it left me curious. Weeks later, I felt more shocks. They weren't extremely painful but annoying. By April, I was feeling it when I smiled. I assumed that I had sensitive teeth and bought various brands of toothpaste - no relief. Then I read that my toothbrush might be too hard. I changed to a softer one and the shocks stopped. Good thing too - I was about to be a bridesmaid in my friend's wedding. I needed to smile a lot and I couldn't smile then.

August 2008, I started feeling the shocks again - time to get sensitive teeth toothpaste or a softer toothbrush, I thought. I delayed a bit. I am indecisive and couldn't decide which brand toothpaste to get since I hadn't had that much luck before. New toothbrush? How much softer can my toothbrush get? It was already ridiculously soft.

But one day, I rubbed my eye and felt the shock. Definitely not sensitive teeth. I quickly Googled and came across Trigeminal Neuralgia. The description was everything I was feeling.

By October, I could hardly eat, talk or smile without pain. I went to the doctor and she looked at me curiously and suggested I had shingles or some such and gave me steroids that Friday. Monday I was back in the office still in pain. One person suggested I had TN but it was quickly dismissed. However, they made an appointment at the neurologist for me. By the day of my appointment, Thursday, October, 23, I was in severe pain. It took the neurologist a minute to diagnose me with TN. He gave me a script for Tegretol and one for blood tests and an MRI. Normally, nothing is found on the MRI, he said, but he still needed to checked.

Tegretol brought oh so sweet relief that weekend. And side effects. I got my blood tests done and my MRI later.

On November 13, 2008, happily medicated, I went in for my results.
Tumor. Epidermoid tumor wrapped around nerves VII & VIII and partially engulfing the V nerve - the trigeminal nerve. The doctor was surprised the Tegretol was giving me relief and said I immediately needed to see a neurosurgeon.

The neurosurgeon journey is another post itself. However, two weeks ago, I scheduled surgery to remove this tumor. I go in on April 21, 2010.

Time for updates

So much has happened in my life over the last few months and even weeks. I have been itching to update this blog for a while. However, I have been extremely busy. It is time to get all my thoughts down though before I forget more than I have.

The main thing I want to do is to get all the information down about my brain surgery. It was difficult finding information and stories about persons going through brain surgery (or at least similar type of brain surgery). I hope that by writing it all down here, I can provide some information for others.