Hi everyone,
I have been reading this forum for two years and have decided it’s time to make my own contribution in case someone else finds my journey helpful.
I was 27 years old when I began to notice ringing and a mild decline in my hearing. This was in August of 2017. I’m quite young and also a singer who constantly listens to music so I knew something was off. I assumed I had wax in my ear and chalked it up to that. Then the ringing began. I had awful ringing in my ear of all different tones - and then somehow, about 6 months later it just stopped. The hearing loss I experienced has remained the same thus far and is most noticeable when I’m in a loud environment like a busy street or restaurant, on the phone or listening to music with headphones.
My mom forced me to go to an ENT in march of 2018– who sent me for an MRI revealing a 1.3cm acoustic neuroma. Panic ensued. I was devastated, especially since I had just recovered from a spinal fusion in 2015 (unrelated but traumatizing nonetheless)- I was also very confused because of my age and the overall rarity of these tumors. With the help of my parents, I made appointments with Dr. Golfinos and Roland (NYU)... Dr. Selesnick (Cornell).. Dr Sisti (Columbia).
Everyone recommended surgery and said I was too young for radiation, but having just healed from a major spinal operation I wasn’t exactly jumping to have a craniotomy - and since the tumor was small and mostly asymptomatic I entered my period we all know as watch and wait. Dr Sisti was the only one who thought I was a radiation candidate and I ultimately ended up choosing him as my doctor because he does both surgery and radiation and I felt he was unbiased and also would be supportive of what I chose to do. Anyway, During this time I did my best to be normal and live my life. And despite the periodic breakdowns , the incessant googling and research and the 6 month MRIs , I’ve been doing just that.
My MRIs show growth and because I am young , 29 now, it was time to make a decision. For the last year I’ve done it all- read every article, driven myself insane, bargained with God, prayed , took supplements known to shrink tumors, consulted psychics. You name it. But when the day came to make the decision it was clear to me that radiation is the way to go. I truly don’t think I can handle another surgery and I also want to trust in the future of medicine and have received many signs from the universe that the less invasive option is okay to take.
Very long story short I decided to consult a second radiation doctor - Dr. Kondziolka at NYU. He gives the radiation in one single dose and Dr Sisti gives the doses fractionated over the course of two weeks. I wanted to hear each doctors opinion. After doing so , I made an appointment yesterday to have GammaKnife at NYU with Dr. K in a single dose fashion. I’m scared. I’m doing the best I can and I hope this nightmare will be over soon.
I would appreciate anyone’s success stories with GK and I would also be interested to see if there are any people my age on the forum who have chosen the radiation route. I am also open to helping anyone who may need guidance or has any questions . I know I am early in my journey but I know the power of being surrounded by like individuals.
Best,
RL NYC
