spoke to my consultant today and will be referred to queens square,london.

[Cwk123]

HI everybody, i posted on here a while back. Im 47 years old and was diagnosed 3 months ago with a 12mm, 1cm acoustic nureoma . Apart from hearing loss and tinitus, im feeling ok. I did have vertigo last year, which now i beleive was my first symptom, which has settled. I had to have a second mri with contrast for more clarification and was told the nureoma is in 2 parts,the first part is solid in the ear canal and the second part is poking out of the ear canal. Im going to be referred to queens square hospital in london. My consultant has said because the nureoma is very small i might just stay on a watch and wait, but because im young she isn't sure what the hospital will recommend.

[Hlondon87]

Hi. If you don't mind me asking which consultant referred you to queen square was it an ENT consultant and is that a local hospital to you? I am trying to get referred to queen square by ENT but was referred to royal london.

[Cwk123 in reply to Hlondon87]

Hi, i live in watford, hertfordshire. My ENT consultant is currently on holiday, so today i had a telephone appointment with a different ENT consultant and she just informed me that she would send my scans of to queens square. I haven't to date had a face to face with any consultant, its all been telephone appointments

[Hlondon87 in reply to Cwk123]

Im 34. The size of mine is 19mm. It started with tinnitus and hearing loss. I then had two weeks of balance issues that settled after i was prescribed stemetil by my gp. At the time of balance issues i was unaware of the tumour and my gp put it down as vertigo. I was given the bad news in June and ever since i have not been coping well. I had a meeting with a neurosurgeon who told me that due to my age (34) i will require active treatment. Either radiotherapy or surgery. So he recommended to wait for my six month scan with contrast to see if the tumour has grown. He also said that many people choose to have it surgically removed due to not wanting radiation. I also had a meeting with an ENT surgeon who works with the neurosurgeon and he also recommended waiting for the 6 month scan which is in a couple of weeks time. The ENT said he would personally go for radiotherapy as it works 90-95% of the time but due to my age people would question having radiotherapy. He also said that during surgery they sometimes cannot remove all the tumour so radiotherapy is still required so why not just treat it with radiotherapy and avoid the risks of open surgery. This has confused me a lot as i have two different opinions. He also said some tumours 15-20% of them start getting smaller on their own. And some tumours just stop growing without any treatment.

[Cwk123 in reply to Hlondon87]

Hi, your symptoms sound very similar to mine and being only 47 years old the thought of having a benign tumour is very daunting and quite scary. Being on this forum, i have seen a lot of positive reviews on radiotherapy, and honestly i think that would be the option i would choose rather then surgery. When i spoke to my ENT consultant yesterday, she was unsure what my options would be, due to my age and the size of the tumour. It is a worrying time, but i can't change anything, i now just have to wait to see what the hospital recommends. Try not to worry, some tumours stop growing.

[Hlondon87 in reply to Cwk123]

Its very stressful. I would rather have radiotherapy than let someone open up my head but there are risks. Around 1 in a 1000 can turn malignant. And if radiotherapy is not successful the surgery can be more risky. Im a person that looks at negatives before positives. I know its not a good way to think. To be honest at times I think to myself just leave it and not treat it. Maybe i may live longer without treatment. Im a father of a 1 year old and want to spend as much of time i can with him.

[Dippy1988 in reply to Hlondon87]

Hi Hlondon87 - I am also 34 so I understand, I know its hard but you need to think as positively as you can - I am also a negative thinker, but since I was diagnosed I've tried to think positively for my family - yes deep down it is scary, but just try so hard to think of the positives - it will make coping with it so much easier. With these tumours you need to remember that that the survival rate for people who have been diagnosed is extremely high (97-99%.. ) try not to think about spending as much time as you can with your 1 year old - you will see them grow up! I suffer from High Blood pressure and I'm more likely to die from that than the tumour... you'll be fine my friend ! We are all here to talk if needed

[Hlondon87 in reply to Dippy1988]

Hi. Thank you for your message. To be honest i still cant stop the negative thoughts. I have already accepted that this is the end of my life. I feel like i will definitely die if i have surgery. Is the survival rate of 97-99% for surgery? Was that figure given by the surgeon?

[LikeBillyo in reply to Hlondon87]

This sounds a bit like me, but I'm a little ahead of you! I had stereotactic radiosurgery/ gamma knife in September 2021. I had very few side effects from that procedure, all of which have mostly gone (my balance was off, but is better now, except if I'm over tired). Due to the slow growth of my neuroma, my post op scan isn't until next month. Fingers crossed that it's stopped growing.

Sorry, I meant to reply to Cwk123 too, I'm Female aged 48, similar sized neuroma. Caused right sided hearing loss for me.

[Cwk123 in reply to LikeBillyo]

Thanks for your reply. Its encouraging to hear that your gamma knife procedure was positive. Was gamma knife offered first or was you on a watch and wait.

[LikeBillyo in reply to Cwk123]

Watch and wait, then had a scan after 6 months and it had increased. As it was during post-lockdown covid times, my treatment appointment took a bit longer to come through... I think about 4 months. The procedure was totally painless, just uncomfortable with having the frame on.

Consultant recommended gamma knife, as I would need my tumour to "grow" for invasive surgery, due to the location.

[Hlondon87 in reply to LikeBillyo]

Hi

Hopefully your tumour has stopped growing and no further treatment is required. Sometimes treating it when it is small is better because you have the option of gamma knife. Some people don't get that option and its straight to surgery. Some people have this tumour and want to live with it without taking the risks of treatment.

Im really confused on what to do next. If it doesn't grow on my next scan do i still treat it? Mine is 19mm so a medium size tumour. My next scan is a 6 month scan.

What would you guys do?

[flappers in reply to Hlondon87]

Hello H, first thing you should do is contact the brains trust or British acoustic neuroma association and ask for some guidance and support in managing the anxiety around having been diagnosed with a small benign ( WILL NOT kill you) acoustic neuroma. And secondly trust that the multi disciplinary team will recommend the very best thing to do next after your 6 month scan ( watch and wait, radiotherapy or surgery) I had the choice between cyberknife radiosurgery ( non invasive) and full surgery for my 25mm squatter and chose the former. Absolutely painless treatment and the affects afterwards have been totally manageable. However, we have to be able to cope with the waiting, rescan isn’t for 18 months afterwards to see if it’s helped stop growth. My advice to you is to get some support for your ( very very very understandable) anxiety around this diagnosis. Remember, it’s been discovered, it is fully treatable and you will live well with it. We are proof of this! Breathe, nurture yourself and ask for support for your anxiety. Enjoy your baby and every day life has to offer, you’ll be in the best position to do this, knowing you could have had something that was terminal. You absolutely do not. X Lin

[Kristyll in reply to Hlondon87]

hope it goes well keep us updated good luck x

[Kristyll]

I hope it goes well and take a list of questions you may need answering.

[Kdavo]

I started with really bad tinitus about 2 years ago and balance issues. In the last year i have lost the hearing in my left ear. Fast forward to 4 weeks ago I had 2 brain scans, then an appointment with an ENT specialist who diagnosed an Acoustic Neuroma, i have been referred to the Skull Clinic at Aintree Hospital, my appointment to discuss treatment is the 14th December! I am obviously anxious and sick of falling.

[Kristyll]

very good luck with your appointment