©

It is your life!
Tom's story

I was diagnosed 11/15/98 with a 2cm x 3cm AN on the left side. My doctor said "you'll have get it removed," and immediately referred me to a surgeon. I asked about alternatives and he said I had none. I went through all sorts of emotions about having a tumor. I am an extremely fit 42 yr old man, work out, eat a healthy diet, etc. So when I learned about this I was really set back.

I had never even heard of the disease, but within a week I became quite an expert on the subject!  The resources available on the web provide a wealth of knowledge for which I am extremely greateful.   I felt more in control of my destiny, and therefore felt better about my prospects.  It is an amazing resource!

After researching the disease and treatment options on the internet, I felt my doctor did not do me justice: There are LOTS of alternatives, many very viable!  So... for those who have a surgeon tell you that surgery is the "only way," please be sure to check out all your alternatives before making a decision.  Nobody can make that one for you!

I decided that I will not have surgery because although the tumor is relatively large, I still had most of my hearing. So I chose radiation in the hopes of hearing preservation, and more specifically "Fractionated Stereotactic Radiosurgery" or FSR. My primary choices were Stanford (John Adler, MD), Staten Island (Gil Lederman MD), and Johns Hopkins (Jeffrey Williams MD).  My choice of Stanford had something to do with location (it is nearest to San Francisco) but also with the excellent team there.

My first meeting at Stanford was in November.  Dr. Adler and his whole staff took two hours to meet with me, examine me and discuss treatment options and expected results. Dr. Adler is BOTH a micro surgeon AND radiosurgeon. He removes ANs with surgery when necessary, but otherwise uses radiation.  So I felt his opinion was both objective and based on experience.  My AN, at 3cm was at the larger end of the scale they treat with radiation, but still they felt confident, based upon the results of years before me.   (By the way, he said those stories about difficult surgery if radiation doesn't work, and the possibility of getting cancer from radiation are MYTHS in his experience.)

I checked in to Stanford on Monday Dec. 21 and had three treatments of FSR radiation over two days. They use a "LINAC" with a fixed frame (yes, that means they screw a frame into your head... ouch!). After attaching the metal frame, they do an MRI with it attached, so they can use specialized computer software to map out the treatment. After, they showed me the MRI and the tumor, with relation to the frame, and the computer-assisted targets for the radiation. All this explanation helped build confidence in the treatment and the team.

But the frame was by far the worst of it (sleeping with it on was particularly challenging, but it was only one night). The loving care and upbeat friendly nature of the Drs and support staff made it as best an experience as possible. The treatments went fine, and I had the love and support of family and friends near and far to offer strength.  

After the two days, they removed the frame, and I went home. I had some swelling in my face from the frame attachment points, and some head pressure for a few days, but otherwise began getting back into the swing of things pretty quickly.  Today -- five days after being released from Stanford -- I was at my gym doing a light workout. For the next 6 months, I "wait and see" for the results. My next MRI will be in June, and hopefully we will see a reduction.

If anyone would like to e-mail me, please feel free, I would be happy to correspond.   I hope my story helps empower others to do lots of research and determine your own path. Your hometown doctor may not know all the options available, so you need to be proactive, and do it yourself.  It is your hearing, your life!

With love to all...

Tom Roth <globalout AT aol.com>
San Francisco, CA USA
Dec. 28, 1998

©

Last Edited: Friday, November 01, 2002