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.

I need to start writing again.

Expect an entry (a real one, i.e.) very soon

License Plates

My friend just saw the following licence plate: 

1VAG469

Top that Steve!

Moving

It's been a while since I created this blog but I have yet to post a "real" entry. The semester is over and that has freed me up somewhat. Today I am sitting in the airport after a very strange trip to Alabama (more on that later). It is hitting me (slowly) that my best friend is moving on Friday. I havent thought about it for several reasons. But tonight I can't seem to escape it. I need a distraction. 

Just for Steve

I posted on craigslist for a roommate.....
First Email
Hello, My name is Lizzy Smirth,I am mailing just to confirm if you still have the room for rent . Here is all I can say about my self for now.. I am 27 years old female and I work full time, Monday through Friday. I was born in Uk/ WODGREEN , but I was brought up in ....I work in Mildmay HIV/AID cure, so we travel alot through this because am one of the perfect workers of the hospital or organisation , now i am now in Uk what we do is to give medicine and to advice those with HIV/AIDS ssitive , now our next contract is at the state , so i need to move back to the state, so today when i was on the computer i saw your ad on the site that you have a place available to live in which is near to where my next contract in the state is being available ,then i decided to email you to know if the place is still available , and to know more about it ok
i will like you to email me back if you think i will be the best person to rent the it I am not really a srts person , but I do love Hockey Games.. I am a very out going person and funto be with. I do play organ and piano, and I do have both piano and organ here at my house.I am not a drinker and I don't smoke and I don't do drugs, like bike ridding, swimming, and I love to travel. I am presently in united kingdom and I will be moving to the state to fully start a new life and get my own business after 8 years of service in the HIV/AIDS I will be staying in the Apt/Room for some months even may be up to a year depending on how the lease is drawn i will like you to email me back to my personal yahoomail if you think i will be a good roomie to you , send back to me a message ok..

Second Email

Hello,Thanks for the quick response. I really want to rent the apartment andthats why I got to you,I wouldn't have emailed you if I am not interested inthe apartmentI will be coming to the states as soon as you agree to rent to me.Iwill see the apartment and fill every application as soon as I arrive to you.Ican stay in the room because I am really in need of place to stay in the statesand it must be very soon,I will bw glad if you can rent it to me=2 0and How muchdoes it cost Sharing the Room with you? My company will be responsible for thepayment of the rent.The payment will be made to you on either moneyorders,cashier check or traveller's check.The payment will be made to you byMy company from our customer.The payment comprises of My work payment andTravelling ticket payment because my company said they are going to beresonsible for the payment of the travelling ticket to anywhere I want to rentat.The payment will get to you and all youneed to do is take the payment to a cashing point or Bank,then you deduct themoney for your rent and send the balance which is for the travelling ticket toour storekeeper whose name and address will be sent to you Later.I will like toknow the amount of the place and if deposit and utility is included too.......... Alittle about myself....... I am 27 years of age,I will stay in the place as long as you want me to.I amHonest,faithful and trustworthy person.I am still single and never married.Iwish to rent from someone that have the same quality as mine.I am picky too andneed to know more about who I want to rent from or share with.I can not meetwith you until I arrive to the states after you have agreed to rent/share withme..................................Am open minded too and like to move with people and also to make friends withthem. Before the payment can arrive to you,the following will be needed fromyou:Your Full name.........................................because the payment will be issued out to youin your name .. Home address.................Zip code.........................Telephone #........................All this are needed to ensure quick and easy deliveryof the payment to you..........