Hi, I am a 49 year old musician and I was diagnosed with an Acoustic Neuroma in December 2023 and had to have surgery a few weeks later due to the size of the tumour and how ill I was. Since then I have been in recovery trying to get back all my functions (balance, stamina etc). Unfortunately the tumour was so large that they couldn't save my hearing in my left ear. I am struggling with adjusting to the hearing loss and am also having to readjust to plying an instrument again as my co-ordination is a bit off (i'm told this will return). I am interested in hearing from people (especially musicians) who have had similar experiences.
Best wishes,
Dominic
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domforr
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Hello Dominic, This must be a great shock to your very being as a musician. I'm a cellist and music therapist. Although I haven't had surgery, I was diagnosed with 18mm AN last year and live with significant hearing loss, tinnitus and imbalance. I just wanted to say hi and support you with the knowledge that your brain and body will work it out. Its tiring but if you can take confidence from emerging neuroscience, it's never too late for brain plasticity. Important however to take things gently as you recover your energy and skills.
Hi, thanks for you reply and sorry to hear that you have also experienced hearing issues. I agree that patience is key in this process as it's easy to get ahead of yourself. not easy when you were playing at a certain level and are now working as a beginner. \hopefully it will all come back in terms of the playing. I was wondering if you had any techniques for adjusting the hearing loss? I find it quite disorientating when I'm in a busy room or when somebody stands on my left side. Thanks for your support and wishing you well.
Hi, sorry, I don't have any tips right now as I have my first appt with the audiologist in 2 wks. Right now I have the world's largest collection of ear plugs and noise cancelling buds, used in various combinations, according to whether practising, performing or listening. Crazy scenario. Try to protect the hearing you have. From what I can gather, there are many options and people find what suits best through trial and error. I'll report back if I find something that works. If any other musicians are reading, it would be good to connect and hear about solutions for specific issues we have to contend with?
Meanwhile, take care as you slowly work up to being match fit again 🎶
Hi There. I am 50something and lost all my hearing in my left ear after radiotherapy a couple of years ago. I completely understand the shock, i uncertainly and grief you must be feeling. Sending you a BIG hug.
Like the other poster, I also had/have some balance issues and such to overcome. They have improved and are still present. I had/have coordination issues as well, and they do improve with practicve in my experience - so get those intruments out and get at it!
If you can reach out to foundations or hearing loss charities they are very good. The misconception is "oh well you still have the other one" but that is very diminishing. It is a loss, so go gently . It takes time.
I am still trialing a cross fit hearing aid - it helps in meetings and such. They are like marmite - not for everybody but your audiologist should be able to arrange to get you one -0 I say get it and use as you like/need.
Also, if they have you on steroids or are within the first six months after them: again, go easy with things. You may think you are thinking clearly but may not be. (Ask me about almost falling off a rock cliff waterfall thinking I was 17 again).
Also, being in music I would do whatever I could to rptect he good ear - all our hearing wanes over time and I am vigilant against loud noises...etc. And I've learned to conten with the tinnitus.
One thing: unless they're removed your hearing nerves (?) I find the sound eardrum bit can still get strained even though the nerves aren't transmitting any longer, so I protect it still...
Another thing: Highly recommend the Soundcore Space A40 | Long-Lasting Noise Cancelling Earbuds for using my phone and such (they have a newer model but these work the charm for me).
again, sending you a big hug and hooe you continue to improve and be well.
Martin
ps. Also if you get headaches or ear pain/neck pain, I have found a combination of diclofenac sodium and diazepam (used off label by my neurologist for this purpose) works well. I only use 1/4 of the diaaz when absolutely necessary - so as not to get a habit going or anything.
Hi, thank you so much for the information and support - it really helps at this stage in the process when I'm still finding my feet. I haven't seen an audiologist yet, so hopefully they will advise when I have an appointment. I haven't been on steroids since the op, but my balance is still recovering. I'm playing again, but very simple exercises to try an co-ordinate my fingers again (I'm a guitarist).
Do these ear buds you mention play both channels in one ear? This is the challenge - finding some that won't just play the right channel, but will combine both.
Good advice re: protecting my hearing. I believe the nerve is gone, but I don't fully understand how that impacts my ear function (apart from the hearing loss)
reaching out to say stick with it. It will improve but is often mentally extremely challenging.
If you have any low frequency hearing in your left ear, you might be sent for a hearing aid roughly 12 months after surgery - this is typically the point where hearing loss is at its worst. The hearing aid will help with tinnitus, as it amplifies the lost frequencies and the recovered sounds starts masking the tinnitus.
I went with a Widex, as the NHS didn’t help in my job. Because I still have excellent hearing in my other ear, I often annoyingly leave the house not think I haven’t put my hearing aid in.
Mine was thankfully small at 12mm maximum but it was in quite possibly the worst position along the auditory nerve as, after radiosurgery, as the tumour swelled it landed on the Trigeminal Nerve.
Hi I am not a musician but had a large acoustic neuroma removed last may. I was unable to walk or talk after the operation. I am now back at work and am almost back to the old me. I to have completely lost all hearing in left ear. I was fitted with nhs cros hearing aids in January which have helped enormously. It is a long slow process and my balance can be iffy from time to time. I am almost 63 my advice stay positive and keep fighting.
I had Gamma Ray knife radiation for my AN in left ear. Has affected my balance but my hearing is totally gone from radiation. I was fitted with a Bi hearing aid for left ear. It transmits all sounds from that side to hearing aid in right ear
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