acoustic neuroma 1.9cm

[Hlondon87]

I have been diagnosed with an acoustic neuroma that was 1.9cm in February but didn’t receive my results until June. I have seen a neurosurgeon at royal london hospital who has advised me that i will require active treatment due to my age. Either radiotherapy or surgery. Really scared of the surgery due to the risks. And the risks of radiation from radiotherapy. How did you guys decide what option was right for you?

[Mork5602]

Hi! I was just wondering how old you are. I’m under Addenbrookes, I have the same size tumour and was told watch and wait. The consultant said because of my age (65) they would do radiation in 10 short sessions if necessary. I’m not happy about radiation either but at least I can wait for now. I have an MRI next week so fingers crossed.

[Kristyll in reply to Mork5602]

I had no other option. It surgery as it was so long ago. You really need to speak to both get appointments and then make your informed decision, I hope all goes well

[Hlondon87 in reply to Mork5602]

Im 34 years old. They offered me both which makes it harder. I have an appointment on Wednesday to talk about my concerns and i have a list of questions to ask. They haven’t spoken about how much radiation is required for me just yet. I am also waiting for another mri to see how much it has grown. Which hospital have you been referred to?

[Brightness14 in reply to Mork5602]

What are your symptoms have you lost your hearing, how was it diagnosed?

[Hlondon87 in reply to Brightness14]

It started with tinnitus and then hearing loss. I had an mri in February. Just before i got my results i had balance issues and was diagnosed with vertigo. Then i got my results.

[Brightness14 in reply to Hlondon87]

More of less the same as me, i am going on the 9th September to ENT so should have more info then. Did you have contrast with you MRI. At my age of 76 years old I don't mind losing my hearing in one ear it's been gone for over a year now. it's been difficult with no thyroid and no gallbladder either.

[Hlondon87 in reply to Brightness14]

My mri was without contrast. My next Mri that I’m waiting for will be with contrast. Hopefully they say it hasn’t grown.

[Brightness14 in reply to Hlondon87]

Yes i hope so. Try not to worry too much these are a pain but hopefully yours willnot have grown and you can then plan how to deal with it. I live in France and they sometimes treat things differently to the UK. I started to get things wrong with me at 63 years old. All my life I never smoked, stayed very fit and this has helped me to recover. At your age you will get better and be happy again.

[Hlondon87 in reply to Brightness14]

I’ve heard health care is better in France.

[Brightness14 in reply to Hlondon87]

Well it is one of the best in the world. No waiting times to visit a GP and at least half an hour given to each appointment. I pay around 25 euros for a visit but 16.50 euros is returned to my bank account. This is the French system. You pay around 39 euros for a scan I have just paid 69 euros for an MRI. 60 to 70% is then returned to your bank account. The French just love paperwork. There is very little private mostly CPAM. Some people take out a top up insurance to pay for the odds. All my thyroid medication is free too I have an exemption.

[Brightness14]

I am waiting for an appointment at ENT to find out if I have the same thing. I suspect that I have all the symptoms of it too. I have been watching various You tube people that have had one too. Only 1 in a 100,000 so rare. There is a hospital the US where they have stories of people who have been operated on. You are only young. The only advice I can offer is to make sure that you have the most experienced surgeon and team that you can find if surgery is the option. Good Luck. Have you lost you hearing?

[Margyr in reply to Brightness14]

In Ireland no one operates very little information

[Brightness14 in reply to Margyr]

I don't understand you post? Please repeat.

[flappers]

Hi, that’s a difficult decision to make in a short time frame… I also had to decide, however I’d been on watch and wait for 18 months before it was crunch time, and that gave me lots of time to talk to others about their experience of treatments, do my own reading via the Brains Trust and BANA and ask a lot of questions. The brains trust also offer one to one coaching to help you feel confident in the decision that you make….I would say join the British Acoustic Neuroma support group on Facebook, ask lots and lots of questions, and know you’re not alone. Ask the multi disciplinary team what they think is the better option for you both in the short term but long term also. I opted for radiosurgery under Guys, and had to have three sessions. I chose this because it was the less invasive option, I was worried about the impact of surgery on my overall health ( I’m 55) and I can manage uncertainty and waiting, which you get a bit more with radiotherapy as they don’t scan for quite a while after as it can swell before it hopefully stops it growing. But we are all different. My initial feeling was ‘get it outa’ but neither option can guarantee it won’t grow back, so learning to live with our little guests in one form or other is usually what we have to do. Some have had successful full removal without significant damage to facial nerves and balance but you’ll have to ask about where yours is situated and the likelihood of that with treatment. Try not to panic, you may have a while to decide. Let me know how you get on and ask away as many questions as you have…Lin x

[Hlondon87 in reply to flappers]

I really feel like this is going to kill me. If you don’t mind me asking how big is your tumour?

[flappers in reply to Hlondon87]

This really WILL NOT kill you. They are benign ( so won’t spread to anywhere else like cancer does) and almost always very slow growing, They know yours is there so there is no way it’ll be left unless it’s absolutely safe to do so. They have said they are going to offer treatment, You are not going to die from this. It’s a blooming nuisance, will likely affect your hearing on one side, may give you a few other symptoms but all are manageable, but it is so normal to panic at this stage and feel as you do. Focus on breathing and nurturing yourself, join the support groups I mentioned above, and know you will absolutely be okay. Mine was 2.5 x 2.2 x 1.8 ( I think) by the time I had radiosurgery. I’m a couple of months on and I’ve been to music festivals, weddings, been swimming in the sea every day, parties on the beach, living my best life ( with naps when needed). It does change your life, but not only for the worse ( it’sa pain in the arse being a bit deaf in one ear and having screaming tinnitus, and other weird little things I can’t describe!) but certainly has made me realise how lucky I am to have the joy I have in my life and that this thing is not going to kill me, but reminds me life is precious and to make the most of it all! Get some support from someone who understands how scary this is. You will get your head around it all, and before you know it, you’ll be offering advice to someone newly diagnosed on how to manage these feelings and panic. You are going to be okay, but right now it’s hard to imagine it. 💐

[ChristianGuitarist]

I hope what flappers has just written will be reassuring. He commented on my post a couple of weeks ago just after I was diognosed and helped me think rationally about this. For the best reassurance tho write to your consultant with your questions. My consultants main advice to me (appart from live a normal life) was don’t read or Watch anything on the internet that dosn’t come from a professional institution or organisation. I have taken that advice and found this brilliant group from the link on the nhs pages. I pray you will find peace of mind in this.