Author Topic: Spanish violinist newly diagnosed  (Read 633 times)

violinist

  • Newbie
  • *
  • Posts: 2
Spanish violinist newly diagnosed
« on: September 09, 2022, 12:44:39 pm »
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I researched a bit in Spanish medical pages (outdated and old) and I got so overwhelmed that I decided to go on with my holidays and make the appointment with the neurosurgeon 20 days later.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
« Last Edit: September 09, 2022, 01:01:46 pm by violinist »

MarlaB

  • Administrator
  • Full Member
  • *****
  • Posts: 114
Re: Spanish violinist newly diagnosed
« Reply #1 on: September 09, 2022, 01:09:41 pm »
You are NOT alone. There are MANY musicians in this forum who have lost hearing in one (or both) years, and with accommodations, can continue their love and participation in the arts. (I am not a musician) but I'm sure someone will pipe in here soon. You are in good company.

Marla B

donjehle

  • Sr. Member
  • ****
  • Posts: 280
Re: Spanish violinist newly diagnosed
« Reply #2 on: September 09, 2022, 04:49:43 pm »
Welcome, Javi, to the ANA Forums!

Thank you for your post and your willingness to share your story.  Many of us have journeyed down a similar path.  This community can provide a lot of information (as you know) and a lot of caring because we know how challenging this experience can be.

And MariaB is right.  Other musicians have gone down this road as well, and many of them continue to play professionally.  I'm not a professional musician; I wouldn't even consider myself an amateur musician, but I do like to play a little on the guitar for my own amusement, and I sing in the shower for myself, too.  And even since I lost most of my hearing in my AN ear, it has been more difficult for me to hear the tones I once could hear.  But, as I said, others who truly are musicians have been able to continue their careers. I am inspired by them.  They motivate me to continue trying.

So, I hope you will continue on with your music.  My only advice for you, Javi, is to seek out a few consultations.  Different acoustic neuroma specialists often recommend different treatment plans.  You want to go with the one in whom you have the most trust.

I hope you will continue to share your journey with us, and I pray that it all goes very well for you!
Don
Burning Tongue, Loss of Hearing & Balance, and Tinnitus led to MRI. Very small AN found on 11/23/2021
While watching and waiting, lost significant hearing. WRS now at 12% (down from 100%). Was fitted with CROS system on 3/7/22.  Stable MRI on 7/29/22
No treatment yet.

violinist

  • Newbie
  • *
  • Posts: 2
Re: Spanish violinist newly diagnosed
« Reply #3 on: October 22, 2022, 04:20:51 am »
Hi!

I'm over here again with news. After hearing many opinions, reading the latest research and studies, and considering my physical characteristics, I decided to go for the neurosurgery (retrosigmoid). It's been a hard decision because every profesional I asked had a different opinion. At the end, I went with the professionals which I trusted the most, their opinion was updated with the latest research (everything has changed a lot in the last few years), and were more used to treat this kind of tumors.

Also, the matter of possibly losing my hearing on one hear was really important to me. Waiting was not an option (my canal is quite small and I do not have a lot of space for the tumor to grow without touching and permanently harm the other nerves). I was not very fond of radio since in most cases the hearing lost after 4-8 years is almost total. And with neurosurgery, I do have a chance to completely lose my hearing, but with the since of my tumor (1.2cm) stadistics and the experience of my surgeon say that at least I have a chance to preserve it for the long term.

I guess I will never know if it is the right or wrong choice. But at least my gut says I am on the right path. Whatever it means.

I have the neurosurgery on the 3rd November in Pamplona (Spain). As soon as I know anything I will let you know. The same way the experience of many other members of this forum helped me, I hope my experience can help somehow other newly diagnosed people around the world.

All the best to you all.

Javi

MarlaB

  • Administrator
  • Full Member
  • *****
  • Posts: 114
Re: Spanish violinist newly diagnosed
« Reply #4 on: October 22, 2022, 08:23:05 am »
I hope you saw on the ANA page that a virtual (ZOOM) support group meeting for musicians is set for Sunday, October 23 at 6pm EST!  I don't know if it's full or if it's too late to register, but here is the link.

https://www.anausa.org/programs/support-groups/upcoming-events/eventdetail/1344/-/support-group-for-musicians

If nothing else, it will give you another musician connection.

Stay well.

Marla B.

donjehle

  • Sr. Member
  • ****
  • Posts: 280
Re: Spanish violinist newly diagnosed
« Reply #5 on: October 23, 2022, 06:03:11 am »
Hi violinist!

Thank you for sharing your update.  It was good to hear from you again.  It was also good to hear that you made a decision which works for you.

What you said is key when you chose to go with the professionals you trust the most.  There are a lot of different opinions out there (as you discovered), and what is right for one person is not necessarily the best choice for someone else.  There is no 'right' answer for everyone as our journeys are all a little different.  But it is important to make our own decisions and not to have someone else make the decisions for us, even if they are professionals.

And I'm glad MarlaB shared the Zoom support group link for musicians.  Hopefully you can take advantage of that!

Best wishes,
Don
Burning Tongue, Loss of Hearing & Balance, and Tinnitus led to MRI. Very small AN found on 11/23/2021
While watching and waiting, lost significant hearing. WRS now at 12% (down from 100%). Was fitted with CROS system on 3/7/22.  Stable MRI on 7/29/22
No treatment yet.

 


anything