WTF a Tumor?

Ya, that’s what I said. A f@#$ing kuato in my head.  Like that Soundgarden lyric.

Background: This was written back in o6 and hosted on for family and support forum friends from Acoustic Neuroma Association.  Go to the very start of that journey with  this postIt can also be reached under catergories/Dx and Tx, and Recovery.

In October of 2006, I was Diagnosed with having a left side benign acoustic neuroma tumor of 3cm. They say it may have been growing over the last 10 years. AN’s apparently grow a couple millimeters per month.

I have nicknamed the tumor Kuato from the movie Total Recall. I did so because it is ugly and I want to get the thing OUT. After 5 years of EMS in El Salvador and 4 working in Mental Health, humor has always been healing to me.

Symptoms I first had hearing loss back in 2000 which I thought was work related. Then it came back after 1 month. Frequent tinnitus over the last 5 years, Over the last 2 years, Dry eye especially during the winter months. Random left side of nose “tingle”. I remember batting air into my eyes to force them to water. I still do -random mornings. I always thought it had to do with bad circulation regarding my bad cholesterol levels. A year ago, I was having feelings on my lower left lip -feeling like metal or vicks chapstick/dentist Novocaine like feelings and it spread to my lower chin. It is now currently spread over my tounge and taste is affected. It is as if I have a piece of aluminum in my mouth all day long.

Just two days ago I sensed my teeth had become sensitive to “wind”. Apparently it is the tumor pressing on my facial nerve. The “doozie” symptom happened back in August of 06 when I went snorkeling. I was really into free diving and spearfishing fish with a Hawaiian sling. Near the end of the dives, I was able to stay down longer than usual and felt “like a fish”-I came up and felt drunk, vertigo, and told myself I better get out of the water, I could not even drive. That lasted 3 hours. I then read up on “shallow water blackout” and thought I was hypoxic-low level of H2o in the blood.

This low level messes with your internal clock on when you need to come up for air! If you know much about diving, the amount of pressure the air around us exerts on our bodies at sea level, about 14.7 pounds of pressure per square inch. For every 33 feet of depth, pressure increases 14.7 pounds per square inch , or one “atmosphere.” I was free diving down to 20-40 feet over the course of an hour and I believe that the pressure was pressing on my AN tumor that is attached to my vestibular balance nerve. Perhaps it was a blend of hypoxia and the pressure.

A week after the diving incident, my hearing went out on my left side. No High tones at all. 3 weeks later, then worried- I wondered why it was not coming back and had a hearing test and subsequent MRI that showed the AN. I am now exploring Tx options. Dr. Patton ENT recommended I talk to Dr. Mangham at Seattle Ear. I had the consult. During that same time, I heard about Endoscopic procedures through Skull Base Institute in L.A. currently researching another less known Doc in Pitts. Penn. named Dr. Jho.

I was also able to get a free consult on the phone with the top endoscopic neurosurgeon @ UCLA named John Frazee. On 10/27/06 -my family and I had a phone consult with Dr. Shahinian of Skull Base Institute. He was on his cell phone on the way to do a NASA consult then flying off to Dubai for a neurosurgery conference. I had kuato resected at SBI on 11/27/06 and am happy with the results. I am alive.

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