Louise Rachlis' Fundraiser

20 years with acoustic neuroma and going strong

By Louise Rachlis

It’s hard to believe, but it has now been 20 years since I received a diagnosis of “acoustic neuroma”, followed by gamma knife radiosurgery.

I shared my “Silver Lining” story with the ANAC newsletter in 2007, nearly two years after undergoing gamma knife. 

I’m delighted to tell everyone that I have been fine since. I still receive yearly MRIs - which have shown the tumour hasn’t grown - and no other treatment has been needed.

First, a quick summary of my diagnosis and treatment:

The treatment was the culmination of a process that had begun in fall 2003, when I finally told my family doctor that I seemed to be having trouble hearing. She referred me to an Ear, Nose and Throat specialist, which led to a CAT scan and an MRI. That led to a referral to a neurosurgeon. Months evolved in between all those appointments, and each one led to several phone calls to arrange an appointment for the next.

Finally, the diagnosis was “acoustic neuroma.” It was a relief to have my problem given a name, and that name wasn’t as bad as I’d feared. I learned that with MRIs more readily available, acoustic neuromas were being diagnosed more easily, but that their incidence was still very rare.

Since my acoustic neuroma was slow growing, about one centimetre, I had three initial choices – do nothing and observe, an operation through the ear to remove it, or radiosurgery. I was monitored by MRIs for several years, as my hearing continued to deteriorate.

By June, 2006, the neuroma had grown to two centimetres, and it was time to see the neurosurgeon again and be confronted with the same choices of surgery, or different kinds of radiation. I opted for radiation, grateful to have an option to surgery, and chose to have the gamma knife radiosurgery at Toronto Western.

Not exactly a knife, gamma knife uses very precise beams of radiation to treat affected areas of the brain and destroy the acoustic neuroma tumour.

Undergoing the process, I looked like something from outer space: The stereotatic head frame was attached to my head with four pins. The frame stayed on my head for the entire procedure, to keep me in a stable position during imaging and treatment.

I returned to Ottawa on the train the next day, and was back at work two days later. I’ve had no problems since.

While my hearing hasn’t improved, I do now have a hearing aid that helps with one-sided hearing loss: The new technology is the Phonak CROS, which consists of a transmitter microphone for the ear that cannot benefit from a hearing aid, and a receiver hearing aid on the better hearing ear.

When sound comes from the poorer hearing side, it is wirelessly sent to the better ear. When I was getting my fitting, the audiologist told me that another of his clients was so happy with the new technology that he hugged him and sent flowers. They are now part of my life, but so small that no one notices unless I point them out. 

At age 76, I continue to write, exercise, enjoy my family, and do whatever I want. The tumour has not grown any further.

It is heartening that 20 years on there is much more understanding and earlier diagnosis. I’m happy to help raise public awareness of acoustic neuroma and to support those in the ANAC community.