Kim's story - Acoustic Neuroma Patient Archive

Kim's story

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I'm a 41 year old mother of two.  I would like to share my story, and hopefully hear back from others who has had a similar experience.

THE DIAGNOSIS

In April 1998 I went for a hearing test, because I thought I was losing hearing in my right ear. The audiologist sent me to an ENT. The ENT couldn't explain why I was losing my hearing, so he scheduled me for an MRI on June 30th, 1998. In the meantime, my symptoms started to get a lot worse: bumping into things, loss of balance, ringing in my ear, and numbness on the right side of my tongue. A friend advised that I go to emergency where she was head of nursing and she thought she knew what it may be. The next day, my husband took me the hospital where she works, and they immediately admitted me for tests. After about 6 hours of neurological testing, cat scan, blood work, etc., the intern returned with the CAT scan in hand, showing a large cranial tumor.

He proceeded to tell me not to worry, that is was not a malignant tumor, and that they had one of best specialists in the country there who removes this type of tumor.  He tried to get the surgeon to look at my CAT scan, but he was in OR, so he told me to call his office the next morning and get an appointment to see him. I went to see the surgeon the next day and was told that he wanted to remove the tumor as soon as possible by the translab approach, which is where your inner ear is sacrificed, and he also gave me a 50% chance of total facial paralysis on the right side. He booked my surgery date for April 27, 1998; then they called and changed the date to May 4, so I could get my MRI and other tests.

Not at any time was I informed that there are other alternatives to microsurgery.

THE HOSPITAL

I was admitted in the morning of May 4th, and underwent a 12 hour surgery to have the 3.5cm tumor removed. I was informed by the doctor that surgery went well, that he removed all of the tumor and the facial nerve had been badly stretched, but was intact and responding to electrical stimulation intra-operatively. I was brought to intensive care and was very nauseated for the entire day, therefore I had to lie on my left side in order not to choke. Unfortunately, when the nurse came in to check the incision on my left thigh where muscle had been harvested to fill the cavity where the tumor was removed, she noticed that the pressure from lying on the incision had caused a hematoma and they had to drain this, which was very painful.

I was transferred to my room the third day and was still very nauseous, had no appetite, extreme headache and had to keep a wet washcloth over my eyes to keep them shut. It didn't help that they were doing construction in the room next door and all I could hear was the drill.  One of the nurses came in and got me up for a sponge bath and to use the washroom.  It was very difficult to stand, but with the nurse's assistance I made it, only to see myself for the first time in the mirror. My head was swollen like a basketball, my right eye was staring back at me from the side of my head, and I couldn't close my eye.  The rest of my head was bandaged, so I couldn't yet see the 13 staples behind my ear. Needless to say, I was happy to get back into bed, and continue receiving the needles with stimotol and demoral to control pain and vomiting.

For the next three days they continued to get me out of bed and walking in the halls. The day before I was to go home, they had a physiotherapist come in to see me. She had a cane made for me and helped me learn to walk the stairs, because my bedroom is on the second floor at home.

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HOME

Once I got home, I continued to take the stimotal and demorol orally, not being aware that I was becoming addicted. This made me very restless and irritable.   My father in-law's wife came to help me out after I returned home.  She is a retired nurse and advised me to stop taking the demoral, which I did and started Tylenol in its place. The side effects diminished gradually over the next week or so.  Also, I was having problems with my eye, so I was taping it shut.

BACK TO THE SURGEON

I went back for my check-up about a week later and was told that I would need another surgery to implant a gold weight in my eye, and was told that it would be months before I would know if the facial nerve was recovering.  I was referred to another surgeon for the implant, and had that done the following week. This really helped, but I still need lacri-lube ointment to moisturize the eye, as I have no natural tear duct left.

It's now March, and I'm scheduled for an MRI in April. The bad news is I had tests done to check for nerve reinnervation, and unfortunately there was none. I have been told that I need a nerve graft, where they will take a nerve from the side of my foot and re-attach it to a nerve in my tongue which they access through the neck. I don't know if I'm ready for this yet, but have been told by my surgeon that I have one month to decide this; my next appointment is April 12th.

I've recently obtained information about Gamma Knife and FSR which I find very interesting, and wish I would have known about this earlier, but I had no access to this information then.

PLEASE RESPOND

KIM <dowalld ATvianet.on.ca>
TORONTO,ONTARIO CANADA
Phone: (905) 836-2646

March 1999

Last Edited: Wednesday, October 30, 2002