In 2016, I was diagnosed with an 1.7 cm acoustic neuroma during a brain MRI at age 39. I am one of the few patients with this condition and no symptoms at all. My hearing was perfect, my balance nerve working well and my facial nerves were in tact i.e. we found this tumor by chance as we tried to identify the source of some regular headaches.
Luckily, my husband is a surgeon so I quickly got appointments in Yale, Columbia and NYU for consultations.
In Yale, the recommendation was clear: surgery, 3 months out of work for recovery, hearing loss in the left side and hopefully no other nerve damage. Needless to say, I was petrified especially since the surgeon could not promise to take out the entire tumor and I may be left with a residual that could start growing again with time.
A week later in Columbia we had a similar conversation, but the surgeon said that he had patients who had successes with gamma knife surgery (one off radiation to the tumor/no surgery) for small tumors, but for my size he would recommend surgery. When we left 1.5 hours later we had agreed that he would be prepared to try gamma knife as it would not impact the results of a later surgery. I started to feel slightly better and there was hope that I may be successful.
There was only one last surgeon to see. We arrived at NYU to find out they had forgotten our apppoitment. My husband begged to see the doctor for only 10 minutes. By then we we were experts on acoustic neuromas and knew exactly what we wanted to ask for. Luckily they agreed. We had read all research papers on the topic that were published by universities in the past 40 years and our questions were targeted. The doctor stayed with us for 2.5 hours. There was little experience with patients with no hearing impairment at all, but NYU had a good idea how much radiation may treat the tumor while retaining a chance that the hearing is not impacted. The doctor agreed to treat me with gamma knife and to follow my case.
The Gamma Knife treatment was over within 4.5 hours. I was left with 4 small needle points in my skull and nothing was visible a week after. I felt some pressure in my ear on most days but it got less quickly and three months later I felt as if I had nothing. It was April 2017. 6 months after my treatment and time for my first MRI and hearing test. Expectation was that my hearing should likely be impaired by now if the radiation damaged it and my tumor probably swelled due to the treatment and that a first reduction may only be visible a year after treatment. The results were amazing! My hearing was still perfect and my tumor had reduced in size! Until today, I till have no symptoms and the tumor continues to shrink.
I am sharing this story so you can make a choice if you are identified with an acoustic neuroma. If you are not in pain and if you can take a chance: consider gamma knife no matter the size of you tumor. It is non invasive and it has the chance to safe your hearing if you still have it. My quality of life is the proof of it. Gamma knife surgery is not the first that is recommended in many clinics. NYU is leading in this field in the US.
