I writing this post on behalf if my husband who is 41 and was diagnosed with an acoustic neuroma in January. He has been referred to The Queen Elizabeth under Richard Irving and we had a lengthy discussion last week about options as the tumour is at a size where it needs treatment. My husband is really struggling to decide between radiotherapy and surgery and I wondered if anyone else had been through a similar experience?
We have an appointment to meet with the radiologist next to understand the long term risks involved with the treatment, which we understand are relatively unknown? The fact the radiotherapy is so much less invasive than surgery is a massive plus but when you are told that they wouldn't recommend this treatment to anyone in their 20s because of the long term risks it's a massive red flag! My husband is very fit 41 year old and has been told he is a good candidate for surgery but the risks involved with that procedure and recovery are also terrifying - although I realise they have to tell you every possible scenario. We feel a bit like we are going round in circles at the moment and are desperately hoping the consultation with the radiologist will help to swing the decision one way or the other. Any advice really would be appreciated. It's such an emotional rollercoaster and so frustrating that we still don't have a treatment plan in place - the waiting is the worst.
Thanks
Zoe
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Zhad
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Hi, I was diagnosed at 42 , my tumour was 30mm and at that time the outcome was unknown regarding how the radiotherapy would work. Anyway I went ahead with the gamma knife. I am now 58 years old and have to say I have had no long term side effects other than some temporary face palsy as the tumour devoloped cysts due to the radio therapy which as now passed. I decided on the gamma knife because it was I felt less of a risk and my thinking was if it didn’t work I could possibly have surgery afterwards. I can only speak from personal experience but I’m very happy with the outcome. Hope this helps and good luck with whatever you choose.
Thank you so much for sharing this - it's so reassuring to know that after 16 years you are symptom free. It does sound like the least invasive option especially as we have two children and a busy family life. Thanks again.
Hi Zhad, I had exactly the same dilemma. I did choose radiotherapy over surgery due to the very high success rate of radiosurgery in stopping growth and being the less invasive option. The risks connected to developing anything in decades to come due are so very very very very tiny re radiosurgery. It has all come a very long way in the last decades.
You can read a bit about my decision making and treatment on the brainstrust website.
Your husband can contact the Brainstrust and ask to speak to a peer supporter who has had the same dilemma, or a coach. There is lovely support for him and for you too. We know It’s such a scary time but I promise you, these little squatters will never kill us, we adapt to living with them and can carry on living our very best lives. You’re not alone with this. Lin 💐
Hi Lin, Thank you ever so much for taking the time to reply. Brilliant advice - we have contacted brainstust and are setting up a coaching session to talk the options through. It is so reassuring to know there is help out there and he can get the support he needs to make the right treatment decision. It just all feels a little overwhelming at the moment, but as you say this will hopefully be a hurdle he can overcome and we can get on with living a full life once treatment is behind us.
Thank you for asking. My husband has decided to have surgery due to the size and dose of radiotherapy he would need. It was on the edge of what the radiologist felt comfortable treating and he didn’t like the idea that the tumour could swell and we might not know if the treatment had worked for up to 2 years.
He now has a date at the end of November for surgery and we are quite anxious about it. It will be nearly a year since he was diagnosed and it feels like this has been hanging over us for so long. Just hoping he won’t get pushed back further if any emergency cases come in. But he is also on the cancellations list so it could all happen quite quickly. Tying to look forward to him recovering after the operation rather than waiting for it.
Ah bless you both, I hear you. The waiting is really tricky. Hopefully you both have found some good support and are able to focus on some lovely positive things to do together to distract you in the interim. It’s impossible to imagine but you’ll both be one day giving lovely reassurance on this forum, I’m sure, about how well it all went and tips for managing the anxiety and recovery. My tip has always been to be extra kind and gentle with yourselves, know you’re not alone, and you’re in very good hands. Let us know How he gets on and remember the brains trust can help too. 💐 Lin
It's a very personal choice. In 1998, at the age of 50, I chose radiosurgery for my 2.5 cm AN because it seemed the most sensible route for me - why take ALL the risks of brain surgery when you could have radiosurgery as an out patient with virtually no side effects or recovery time? It also offered a chance to retain my hearing at pre-treatment levels. 26 years on I am even more sure that was the best choice for me. However, other friends took the opposite route because "they just wanted the darned thing out". Many of them are just as happy with their outcome. Good luck with your decision making.
That really is great to hear especially with so much time passing after the radiosurgery, thank you so much for replying. I'm hoping that once my husband meets with the radiologist he might feel more confident about the procedure.
And an important point for your husband to bear in mind is that the machines and treatments for radiosurgery have vastly improved in the 26 years since I was treated so the outcomes should be even better. Do make sure though, whatever treatment he chooses, you are in the hands of an expert in that field.
Hi I can understand your dilemma 100% having been through this myself. It seemed a huge burden to somehow become an expert in AN and 'choose' which treatment route to take. We all hope to be given a definitive way forward. Not so in this case except in some cicumstances. My tumour was meduim sized but became cystic and rapidly grew. Until this point I had favoured radiotherapy as, like most people thought this route was less invasive. This option was thrown out immediately as radiotherapy can involve swelling and is not recommended for cystic tumours. After further reasearch I also realised radiotherapy does not remove tumour but attempts to stop it in its tracks. At that point I began to favour what some consider the 'nuclear' option of surgery..not that I had much choice. I just wanted rid of the thing once and for all. Sensors attached to the face during surgery determine which nerves are potentially being damaged..and accordingly avoided. I have a small amount left as to remove the lot would have left me with facial palsy. My face came through in tact! I did have (rare) complications but would choose the surgery route again given the choice. This took place in November '22 and it's been a bit of a long haul back to a new version of myself but it's possible for everyone to adapt and live a good life.
You do wish the consultant would help to sway you in one direction or the other! However I do feel very fortunate that my husband has treatment choices as I realise this isn't the case for everyone. It's really comforting to hear that the surgery was successful for you and that you didn't suffer with facial palsy. That really is a worry. Thank you for replying and offering reassurance regarding the surgical route.
had 6lots of radio over 6 days felt a bit tired for about 3weeks [this is after 2 years of wach and wait] nothing changed . told to get ready for surgery then just befor e [4 weeks] i was told i was too old and they could not operate told i should let nature take it course and to get my affairs in order.that wasnov 23 im still guiddy and sometimes have a twitchy eye when i get stressed .still alive and kicking.the choise is yours
I'm so sorry to read this - my heart goes out to you. That is the fear really - that if the radiotherapy doesn't work my husband might not be as fit for surgery and the tumour far more complex to remove. I'm not sure mentally my husband could cope with the wait to see if the radiotherapy had been successful. Thank you for sharing - I wish you all the best.
Hi Zhad depends on the size. My AN was 2.8cm. I had hearing loss and kept falling over. I saw Professor Brada consultant radiologist at Royal Marsden in 2005 and stayed in their hostel Mon-Fri, going home on train at weekends. I chose radiotherapy and never regretted it.
I have an NHS hearing aid and hearing tests show my bass frequencies have gone completely. My advice would be not to have Gamma Knife which can be one huge blast with some side effects. I had FSR - Fractionated Stereotactic Radiotherapy smaller doses of radiation over 6 weeks with breaks for weekends, machine repairs and bank holidays.
The upside is it is not cancer. Prof Brada had set-up the Clatterbridge Clinic in Liverpool. I think he's retired now. But you could have a private consultation at the Clatterbridge. Get copies of your husbsnd's MRI scans first to take with you.
Do your research, National Library of Medicine for information about best current treatment for acoustic neuroma aka vestibular schwannoma. And enquire about the type of radiotherapy available at QE. If you''re not happy, go back to your GP and get a referral to another hospital where F S Radiotherapy is available.
Sorry Zhad wasn't clear. Radiosurgery is Gamma Knife with possible facial palsy etc. FSR is radiotherapy. Not so intense and over a longer period usually 25 fractions depending on size of tumour, usually using a Linac Machine. Or these days I think Royal Marsden has Proton Beam therapy. Good luck
I have treated acoustic neuroma with CyberKnife radiotherapy with great success. I have also been involved with Gammaknife and agree that it is effective also. This type of tumor is extremely close to a lot of critical structures in the brain. I would not have any other kind of radiotherapy as they are not as accurate. Surgery runs a very high risk of cuting nerves and critical structures. A tumor the size of 30 mm is huge in that part of the brain. Adjacent nerves are also resistant to radiation which is another plus. I have treated patients as young as 14. Prayers for your husband and his cure.
I was diagnosed with an AN in 2021, and received radiotherapy in Dec that year, follow up MRI Dec 22, and another MRI Dec 23- I have been told a small amount of shrinkage- next MRI in two years. I am now 53
My opinion -Radiotherapy's TBH is not pleasant (but short lived discomfort) and better than the alternative of total hearing loss and a week in hospital. Which is what I was told by the Dr.
My Dr. Was very blunt and outlined the worst that could happen from both procedures.
I still have tinnitus which I was not aware of this morning until I started writing about it.
I have adjusted to the loss of balance. One thing I cannot do well (without concentrating ) is look around or over shoulder when out running or on a treadmill. This is manageable.
I have over 50% hearing loss this will not improve and frustrates the hell out of my wife/ family as I always ask them to repeat things, but also comes with benefits lol. Apparently a crossover hearing aid could resolve this. Yet to try
Have a word with the doctor to explain all possibilities/ outcomes they are scary but you need to be told the percentage of risk and his/ her success rate of radiotherapy. Mine was done in Sheffield which as from my details above great.
Also I was told if the first attempt of radiotherapy did not work it could be repeated. The tumour will possibly shrink and will die off, it will still be there, what you want is it not to continue growing.
The last resort for me was invasive surgery. Good luck on your choice and get as much info from the consultant.
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