THE CONSULTATION

November 23, 2010

After being advised to have another MRI and completing that procedure I received a call from Dr. Parsa's assistant wanting to confirm surgery dates.  What! Surgery dates!  Wait a minute.  I want to know what the MRI showed.  A consultation with Dr. Parsa was set.


The meeting with Dr. Parsa was not what I hoped. “The tumor is growing,” was the verdict. The entire team concurs, it needs to be removed; like removed with various tiny tools once a hole has been made in my skull.  If nothing is done it will keep growing, the symptoms will get worse and it will reach the brain stem.

The doctor explained the images from the MRI do not give information about the texture (my word) of the mass, only shape and size.  Nothing was done earlier because the growth might have been swelling from the radiation, not growiing. After watching and comparing MRI’s, the experts believe there is no doubt the mass has grown.  It looks like a piece of cauliflower, rather than a smooth disc and has gone from 14mm to 2 cm this past year. 

Dr. Andrew Parsa and his surgical partner, Dr. Steven Cheung, will lead their group of medical professionals in the surgery.  It’s tedious work and close to the brain, but they do this kind of surgery “all the time” and are very confident mine will be successful. They have designed a unique method of removing the tumor with minimal disturbance of the facial and auditory nerves. The goal is no facial nerve damage and some preservation of hearing. All is good news, much better than I had anticipated. 

Mid November, 2010 Forever Optimistic

First of all I am an optimist and procrastinator by nature. I felt good.  Yes, the face was still screwing up and sometimes embarrassing.  It had become second nature to explain what was happening to sales clerks or people who thought I was having a stroke or giving them a dirty look.  Most of the time I could hide for the two minutes an attack took and no one would know it had happened.

The “spinning” was a bigger problem.  So far I could drive.  If I had a “spin” I’d rest my head heavily into the back of the seat which steadied me and on I’d go.  Escalators were a problem until I realized if I looked solidly at the person in front of me I wouldn’t “spin”.  I found ways to compensate.

October 2010 Progress (or Not)

Because my facial spasms (seizures) became more frequent and intense, my neurosurgeon suggested Botox treatments.  This sounded good to me, Botox; maybe I’d get a face lifting reaction which would be great!  I’ve noticed lots more sagging and bagging everywhere, face included.  So, thinking “cosmetic”, not “medical”, I visited with another Neurosurgeon at UCSF who specializes in facial nerves. 

He first explained that I am fortunate not to have great pain associated with my facial contortions, many patients with my acoustic neuroma problem do.  Botox injected by neurologists can lessen the effects of the seizures.  We scheduled an appointment.

Then, Dr. Barbaro mentioned that after looking at my latest MRI, he thought my “tumor had grown and what was I going to do”.  “What, grown?” I said.  “I understood it has not grown, and is stable.”

November 2009 New Symptoms

I made my early morning walk to the bathroom and began the ritual teeth brushing. Then I felt the right side of my face freeze.  I flipped the light on and there it was, a sagging, frozen face.  I knew what it was immediately, but to be sure, I ran to my partner, Mark asking it he could see “it”.  He answered with a hug.  Yes, my facial nerves were reacting.

Dr. Parsa scheduled an immediate MRI and the results still looked fine.  The tumor was probably just swollen, irritated and pressing against the neighboring facial nerve.

As the months went by the facial “seizures” increased from 2 or 3, to a dozen times a day making me look like "Pop-Eye the Sailor Man" for 2 minutes at a time. The “spinning spells” increased and often followed the Pop-Eye experiences.  All is irritating, but doesn’t interfere with activities.

I continued to pray, exercise, practice yoga, play golf and write (as if you can’t tell about that).

I was checked periodically to be sure the little nuisance didn’t return.  Regardless, I was still grateful to Dr. Lars Leksell (inventor of the Gamma Knife Surgical process) and the team at UCSF for the beautiful and full life I live and enjoy in Sonoma.

Early 2008 to 2009 After Gamma Knife

I returned to normal life and waited.  The radiation would kill the tumor over an eighteen month period that could produce side effects of fatigue, hearing loss, facial paralysis, balance problems and ringing in the ears.  Some of these symptoms would subside and others would last, but compared to invasive surgery it was a piece of cake and was at least sixty-five percent cheaper.

For the first couple of months I had great fatigue and slowly my energy level returned to normal.  About once a week I had facial numbness around my right ear and several times a week my ear canal area felt like it was stuffed with cotton and I couldn’t hear.  These “spells” didn’t last long and life was good.  I continued all usual activities from work to golf. 

Follow up MRIs showed my tumor had stopped growing. The Gamma Knife Surgery looked successful. 

A series of hearing tests showed I had the expected hearing loss.   These tests were us usually conducted in a sound proof room through earphones. Various tones and words were projected while I told the technician what, or if, I heard. 

One test involved giving me a sleeping pill so I would not move.  Instruments were hooked up to my skull while the reception of my brain’s response to sound was measured. My acoustic nerve could hear about a third of a sound, but couldn’t transfer the data to my brain in a form that could be interpreted.

Something like, the ear says, “ Brain, I have incoming data?” “I get some data some of the time and will interpret the part that registers.” says the brain back.

By spring of 2009 I began wearing a spiffy hearing aid that compensates for the permanent hearing loss in my right ear. It is programmed to pick up the exact tones that my nerve doesn’t recognize.  It’s not perfect, but helps.

Annoying imbalance, vertigo, “spinning spells” began in early 2009 and increased from occasional to daily. Sometimes at night I’d pretend I was on a Merry-Go Round.   The ear-ringing was sometimes so loud I asked people standing next to me if they heard it. They didn’t.

Eighteen months had passed since the Gamma Knife Surgery. I’d have yearly MRIs to watch the dormant pest, but I was free and clear! The tumor wasn’t growing. My symptoms were annoying, but did not interfere with living as usual.  Life was great.  Anyone in my 65+ age group can expect some kind of physical changes.  We aren’t 29 anymore.  The body is aging.  We can eat well, exercise and take vitamins, but each of us has something!  I felt very fortunate.

Mid 2006 Spinning Options and Decisions

Months went by, more MRI’s, hearing tests and evaluations.  I looked at each MRI with the doctors.  I saw my “little body-addition”.  It was oval, looked white on the MRI screen.  It was growing, but slowly. I figured about 2 mm a year, not much.  It was at 12.  I asked my surgeons how big it could grow before injury to my brain stem.  He said at 20mm he would insist on immediate surgery.

At the end of 2006 the tumor had grown to 14mm and had developed an “arm”, a tiny 3mm extension aiming at the brain stem. The doctors were more concerned and suggested a surgery decision by spring. My yoga and visualization and prayers continued. 

Because the radiation surgery was not invasive, I opted for it, instead of regular surgery.  The gamma rays would "kill" the tumor, but it would remain in my head. There was risk and the after-symptoms might be troublesome, but not even close to those of radical brain surgery.

I scheduled Gamma Knife surgery for September 10, 2007 and met with the team of Radiologists and Physicists. I toured the room where one of the two gamma knife facilities in the country was located.  It looked like the inside of NASA with computers and screens everywhere.  The three dimensional MRI of my brain flashed on the monitors and the physicists mapped the exact shape of the tumor into the several ton machine that delivered the radiation.  Unlike malignant tumors, my benign tumor would get one massive dose of radiation instead of many small doses needed for cancer.

September 10, the day of the procedure I checked in at nine, was given relaxation medication and then fitted with a halo.  This was the most ominous part of the procedure.   The head neurosurgeon, Dr. Andrew Parsa, placed a metal and plastic device on my head and screwed it into my skull so my head would not move a millimeter. The contraption was heavy but not painful. Several times Dr. Penny Sneed, the radiologist specializing in Gamma Knife surgery, appeared and fitted me with a clear plastic helmet covered with holes the size of a pencil.

I waited my turn and was wheeled into the Gamma Knife room. (I think I was wheeled, I was drunk with the meds and things were fuzzy.  I was not asleep, just in and out of awareness.) 

The process was much like having an MRI.  The Radiologists placed the holy (small h) plastic helmet over the halo and screwed it in.  I laid on the flat bed and it hummed, rolling my body into a machine the size of a Volkswagen Beetle.  I didn't care.  I didn't care about anything and don't remember much other than clicks and hums.  The drugs worked. Gamma rays were shot into the tumor for over an hour and it was done. 

By late afternoon, still high from the meds, I was singing 50’s songs on my way back to Sonoma. 

Spinning - Arriving in California

 

Early in 2006 my symptoms were very slight.  My hearing was fine, very few “spinning” sensations (I had been accused of being a dizzy blond all my life), some ear-ringing (but that could be from anything).

As I settled in my new home town, Sonoma, I had a hard time remembering I had a slow-growing, but ever-present tumor in my head. My daughters and granddaughter lived near; one in Sonoma, another in San Francisco and my son was in Palo Alto.  I went to Farmer’s Market each Tuesday evening for picnics.  I visited wineries, learned the roads to Petaluma and Napa. Met new friends and began a new life. I was more relaxed and happier than I had been in many years.

I continued my research for information about the acoustic neuroma.

I arranged a referral to the University of California San Francisco through a doctor friend of my daughter, Elizabeth (Thank you Tonya).  A group of UCSF doctors researched and were now performing a revolutionary alternative to traditional surgery called “Gamma Knife Surgery.”   Gamma rays are electromagnetic protons produced by sub-atomic particle interactions, or radiation particles that can be specifically directed to very hard to access tumors (got that off the web). 

Medical records were sent and an appointment set. The UCSF doctors conducted more MRI’s and tests. The neurosurgeons and radiologists verified I was a suitable candidate for gamma knife because my tumor was small and I was in good health otherwise. There was also an outside chance it would stop growing. We could wait and watch and decide what to do later.  What a blessing!  Because this was a benign growth, I had time!

All along I, and many friends, had been praying for healing.  I practiced visualization techniques to make the tumor shrink.  My yoga practice became more serious and I believe the combination of prayer, exercise, relaxation and deep breathing helped prolong the growth process. God had been holding my hand for years, lead me to California and I knew He would guide me. I kept the faith.

My Life Spinning Out of Control - Acoustic Neuroma

I owe my life to a man I’ve never met, a Swedish physician and Professor of Neurogurgery, Lars Leksell.  He and his associate Borge Larsson developed the concept of radiosurgery in 1968 that saved and gave me the quality of life I have today.  This medical miracle was perfected in 2006 and has made what used to be hours of invasive surgery and months of rehabilitation turn into a short out-patient procedure. 

Five years ago I was driving along a suburban street in Houston preparing to make my last flight to California as a Texan. Two days later I would move to Sonoma to join my three children and their families ending a long sad marriage to begin a new happy existence.

Suddenly I couldn’t hear out of my right ear.  It sounded like I was in a vacuum or underwater.  I tested by thumping and scratching my right ear and tried to listen to my cell phone. Nothing! After a few hours of not hearing I made an appointment with my ENT doctor. 

I announced my self diagnosis to the specialist explaining I needed some kind of spray to clear my blocked sinuses before flying the next day.  The doctor, in turn, informed me that I did not have a sinus problem.  Instead, I had “sudden hearing loss” which is a very dangerous symptom that should never be ignored.

After a few in-office tests I was given several prescriptions to treat what might be a viral infection or ear fluid problems.  I was to rest and not fly for at least 3 weeks.  Woops!  This was more serious than I thought.

I began taking the 26 pills a day and felt fine.  My hearing began to return to my right ear.  Yes, I was definitely getting well, or I thought I was. Then the world started spinning and tilting. To get my balance, I had to hold on to nearby walls and lean into them. It was scary but I reasoned it was a reaction to all the medicines. 

I called the doctor and was told to go right to bed and not to get up. He scheduled an MRI for the next day.  That was the first time I considered this “sinus problem, turned to infection” might be something significant, dangerous. Once rested, I felt pretty good.

My friend drove me to the hospital where I had the first of what was to be many MRIs. My curiosity about the process overroad my fears. It was pretty fascinating to be put in a tube where magnets produced a three dimensional image of my brain.  I, a person who usually assumes a bump on a finger is a life-threatening cancer, wasn't worried until afterward when I asked the technician what he thought about my test. He looked at me and said, "Oh.... I don't comment on test results. Your doctor will review the results and get in touch with you." Not, "It looks fine to me" like most technicians say after tests.

By the time I got back to my friend's home where I was staying, my symptoms had lessened and I felt pretty good. However, the phone was ringing. My doctor asked me to sit down and told me the bad news.  They found a brain tumor called an acoustic neuroma or schwanoma.  The great news was that because of the shape and location the medical experts thought it was benign.  That was good news, benign. I didn't fully appreciate how important that one little word would be.

The following days were frantic, frightening and filled with medical appointments. I researched everything I could find on the subject. Regular surgery would be very dangerous because the acoustic nerve, where my tumor lived, is located next to the brain stem and is, I quote, “not only one of the most exacting and laborious, but also one of the most dangerous and unpredictable operations in the entire neurosurgical repertoire”. Having an exceptional neurosurgeon would be a must. 

The initial recovery period would be at least six weeks with ongoing physical therapy to regain whatever speech, balance, or movement problems occurred.  If anything went wrong I could have life long problems including paralysis or an infection could develop causing death. The flurry of activity kept me from spinning into panic or waves of self pity. I had some time to research. This wasn’t an emergency.  Unlike malignant tumors, benign tumors grow slowly, and mine was still small. 

I was given the go ahead to continue my move to California.  I gathered names of specialists across the country finding the most renowned acoustic neuroma surgeon in Los Angeles. Dr. House had improved the surgery technique in recent years resulting in a change from an 80% mortality rate to 5%.  I sent my records to them, got a patient number and set an appointment.

Acoustic Neuroma Overview