Hi! I'm Javi from Spain. I'm 34 and less than one month ago I was diagnosed with a 1,2cm AN on my left side.
I cannot really tell since when I started losing audition, but it's been a while. I've been checked up by otorhinolaryngologists, neurologists, and my general practitioner few times over the last years.
The response was always the same, few years ago I had an ear infection and since I am always exposed to loud sounds (I work in a professional orchestra), it was normal that over the time I'd lose some hearing. Until this summer. A couple of years ago, luckily, I got a private medical insurance (in Spain is not common since there is a free public medical assistance (without almost limitations). I didn't get it because of my hearing but because of other personal reasons. One month ago, I went to one of the best private hospitals in the country which is in my home town where my parents still live. I had made many tests and after the report was written, and next day I was going on summer holidays, the doctor said: just in case, let's make an MRI.
Bingo. The day after while I was on the train on my way to have my summer vacation, the doctor called and told me the news. Of course I had no idea of what an acoustic neurinoama was. I love science and I study to be a dietitian as a hobby since last year, but it was really new for me. Fortunately, I have an aunt who is neurophysiologist (really good one) and helped me understand everything.
I researched a bit in Spanish medical pages (outdated and old) and I got so overwhelmed that I decided to go on with my holidays and make the appointment with the neurosurgeon 20 days later. Two days before, I literally read all the scientific literature published in Pubmed in the last ten years.
I was ready to had the conversation. I had the data and at least now, I was capable to understand properly what the neurosurgeon had to say and evaluate if what he said matched what I learned (and my aunt's opinions, who came with me to all the appointments).
He was really clear, its in the point of being a middle size but still small. The shape is irregular with a bulge like in one side and my canal was smaller than in other people.
The facts are that I am still quite young, my tumor is still small (ish) and I have a permanent position in a professional orchestra as a violinist.
To preserve the facial nerve was almost out of the question since my tumor is small, but the conversation was about to preserve as much as possible my hearing nerve. For the long run. For me, if I´m gonna lose my hearing I'd rather do it today than in 10 or 20 years.
Watch and wait could be an option but only for a short time.
Radiosurgery was an option but although the tumor probably will stop growing, I'd have a big chance to loose all my hearing in 4, 6 or 10 years. Again, not an option for me.
What he suggested is to make retrosigmoid surgery monitoring the hearing nerve (and the facial, of course).
He was clear, I am going to lose some hearing after the surgery, but no one knows exactly how much. He is specialist in this kind of surgery for AN and his history is quite impressing. He could "predict" that if everything goes perfect I would lose 15-20% more than what I already lost. But I could lose all my hearing too. I is impossible to assure a positive outcome but he was quite optimistic.
It feels like a lottery. But at least, if I do the surgery, in few months, I will know how much (if any) hearing I have, and what are my professional options for the future, instead of not knowing what to expect in the future. I don't think psychologically I could handle the wait and watch for many years or take the radio and losing my hearing little by little.
Of course I am currently asking for more opinions. In the public hospitals, the protocol is clear (I asked in two different regions of Spain): until 2cm watch and wait, from 2 to 3,5cm radio and bigger tumors surgery. Not an option for me.
Now my doubt is if I should ask for more opinions in other private hospitals or go for it. It is going to be a major change in my life and I was just diagnosed, so probably I should wait... but on the other side, I know what I'm facing and I'd rather take action sooner than later. Besides I am very positive about my future no matter what the outcome of the surgery is (about my hearing I mean). I have really good health, the tests suggests that my hearing nerve is probably intact still, and I will do everything is in my hand to speed up the healing process. I'm also prepared if everything goes wrong mentally. It will be really difficult but I'd rather face it with 34 than with 54.
I wanted to thank ANA for all the info in this page and forum. I read most of the threads and found really a LOT of useful information. I don't really know what is the final goal of this message... I guess I needed to tell my story to people who can understand what I am going through. Although I have a lot of people who love me and that I can talk to, somehow, I feel really lonely too. I guess I just wanted to say hi, tell my story, thank you for the ANA and I will be eternally grateful if you have any pieces of advice that you can give me.
Thank you again,
Javi
