Author Topic: My AN story  (Read 4127 times)


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My AN story
« on: March 15, 2005, 06:45:28 am »
I am 52 years old, mother of 3(all grown), grandmother of 5 (2 more on the way).  Life sure can spring surprises on everyone.  Somehow, we learn, cope and can enjoy what life we do have.  It has not been easy but, we can and will survive.
How did I find about my brain tumor?
I kept having earaches in my left ear.  My family doctor thought I had ear infection.  The antibiotics never cleared it up.  After I informed him of my mother’s brother having a brain tumor, which turned into cancer.  He sent me to have a MRI and a tumor actually did show up in my brain.
To make a long story short: I was 50 years old when I found out that I had Acoustic Neuroma brain tumor (over 4 cm mass in diameter). On July 2, 2003, Dr. T. Fukushima and Dr. John Schmidt were able to remove approximately 80% of the tumor. The surgery was performed at the Ruby Memorial Hospital in Morgantown, WV.
I did okay but, somehow developed Bacterial Meningitis after the surgery.  I was actually on the way home the when the symptoms and excruciating pain starting affecting my body and ended up in CAMC Memorial Hospital in Charleston, WV.  I was in the NICU for 2 weeks or more.  After getting into a regular room, I started hallucinating and Dr. Schmidt had to do emergency surgery on me trying to get the infections out of my head and side of my face. That experience gave me a rough time, as a matter of fact, I nearly died. My left ear is nearly deaf and the noise in my ears and head is very loud and annoying.  The left side of my face is numb the outside of the left corner of my eyelid does aggravate me at times.
I had a lot of pain between the jaw and temple, especially the temple.  My neurosurgeon said it could be  "Trigeminal Neuralgia" (Facial Nerve Pain).  He sent me to the Pain Management Center. After trying to help with the pain, the Center and Dr. Schmidt sent me Morgantown to see Dr. Fukushima.  He sent me to the Gamma Knife Radiology neurosurgeon, Dr. Karlsson, in hopes of finding out what is causing the pain on the left side of my face especially the temple area.  He had another MRI done, and after consulting the others they said cannot see what is causing the pain but, noticed the remaining tumor had grown 1cm.  They felt that having the Gamma Knife Radiation Treatment on the rest of the tumor would help stop it from growing more.
We went to Morgantown, October 14, 2004. We were very fortunate to obtain a room in the Family House in Ruby Memorial Hospital and spent the night there.  On the 15th, the anesthesiologist helped me sleep through the whole thing. It turned out that my neck was too short for the machine to do the work so, the Gamma Knife team had to do all the machine work. Instead of just a few hours by machine, it took 10 hours manually.
They had to send me to observation unit for the night to help me recover. My husband was able to stay in the room with me but, he did not sleep very much because my bi-pap alarm kept going off due to my not breathing too well. They gave me pain meds for my head. That sure helped a lot!
Although I was weak, wobbly and sleepy, I was released Friday, the 16th.
Oh boy, the noise (tinnitis) in my head is so loud, much louder than before. It actually wakes me up.  I still have some pain but, am able to cope with it for now.  I go back in April 12, 2005 for another MRI.  Now, all we can do is wait and see if the surgery succeeded.
Smile, God loves you!


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Re: My AN story
« Reply #1 on: March 17, 2005, 11:54:01 am »

What a true survivor story.  I am very happy that you are with us here at this site.  Your story and inputs will help to guide those new to this "strange world of the AN."   I've heard of people naming their tumors, or just calling them the "invador"  (thats for you Rosie and Jim).  I've even met some cyber grand parents through this site (Rosie and Jim). 

I am a Gamma Knife patient and am still dealing with swelling of the tumor.  Thank God it's contracting less though...maybe it will finally die  :)   I had my treatment Nov of 2003 and still deal with the follow up MRI's.  As a matter of fact, my next one is in April... 

Again, welcome and please share your story with the newbies.   Take care

Originally 1.8cm (left ear)...Swelled to 2.1 cm...and holding after GK treatment (Nov 2003)
Gamma Knife University of Virginia
Note: Riverside Hospital in Newport News Virginia now has GK!!