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Archive => Archives => Topic started by: Joy on February 25, 2005, 07:22:24 am

Title: Introduction and my story
Post by: Joy on February 25, 2005, 07:22:24 am
My name is Joy.  I am 52 years old and yes, I have a Acoustic Neuroma Tumor in my brain.
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 did a MRI and a tumor actually did show up in my brain.
To make a long story short: 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, as I was on the way home excruciating pain starting affecting my body.  Somehow, not knowing that after surgery I had developed Bacterial Meningitis and ended up in CAMC Memorial Hospital in Charleston, WV.  Dr. Schmidt had to perform emergency surgery trying to get the chronic infection out of my head and side of my face. That did give 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 have 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 back to Morgantown to talk with  Dr. Fukushima.  He sent me to the Gamma Knife Radiology neurosurgeon, Dr. Karlsson, in hopes of finding out what was causing the pain on the left side of my face especially the temple area.  He decided for me to have another MRI done, and after a conference meeting with the others, they said could not 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, Wednesday (October 14th). We were very fortunate to obtain a room in the Family House in Ruby Memorial Hospital and spent the night there.  On Thursday, 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 and a little dizziness but, am able to cope with it for now.  I go back in April another MRI.  Now, all we can do is wait and see if the surgery succeeded.
Title: Re: Introduction and my story
Post by: rvkorte on February 25, 2005, 10:46:42 pm
Joy; ( your name )
  And "smile, God loves you" ( your signature ).
  Wow! Quite an experience and a lot of brain and inner ear assault. I can see why you have increased tinnitus.
  You probably know GK Tx is a fairly standard thing for regrowth. Also, GK has a high effectiveness rating so please think wellness even during these days of recovery.
  I know it is easy for me to toss out the words, "Think wellness", yes it is indeed easy to say, but as you say, "one must now wait". Please try waiting with as much optimism as you can.
  Less than thinking wellness with optimism will serve to make you depressed and even more anxious.
  I trust God is with you. Ask of Him peacefully your desire and express your concerns in the quiet of your bed or room. Then you may become named "Joyfilled"!
Title: Re: Introduction and my story
Post by: Joy on February 26, 2005, 06:18:49 am
Hello Russ,
Thank you so much for your kind words.  It makes it easier for me to talk with someone who understands what I am talking about. :)