Fast growing AN

[Teddyandjock]

Hi, I was diagnosed with a 10x6 AN in February 2021. After having another mri January this year it has grown quite aggressively to 17x10. I am opting for surgery in Leeds LGI in 3 or 4 months. Had anyone had surgery for an AN this size and how did it go? Also has anyone had their AN grow this quickly?

[Kristyll]

Wherever you go it seems to be needing removal before it gets any larger. Good luck x

[Hidden in reply to Kristyll]

Hi Kristyll do you know of any specialist surgeons in this area?

[Kristyll in reply to Hidden]

Where is your area?

[Hidden in reply to Kristyll]

South West but we can travel to see a specialist if there is one in London? Do you know of any specialists in this field?

[Pinkrose1 in reply to Hidden]

I saw Mr Teo neurosurgeon at southmead hospital, Bristol in south west. He is an excellent surgeon and specialises in AN. He does NHS and private from what i have heard

[Daisymeadow]

I’m needing surgery on a 2.2cm AN. At my last appointment I was really trying to avoid surgery, but the surgeon said you can wait, but the larger the tumour the increased risk of complications. Hopefully the fact you are going while it’s small will lead to a positive post surgery outcome.

[Hidden in reply to Daisymeadow]

Hi which surgeon are you seeing? Are there any specialists in this area?

[Daisymeadow in reply to Hidden]

I just transferred from Liverpool to Salford. I was told that this is a Centre of excellence. I’ve also heard that a lot of people go to Cambridge. I have no idea if they are better than any other hospital. I guess it all comes down to the individual surgeons.

[Hidden in reply to Daisymeadow]

Thanks. Do you know the names of the recommended surgeons in Salford. Also do you know the names of any recommended surgeons in Cambridge. We have health insurance and so I think we might be able to see a specific person Thanks

[Daisymeadow in reply to Hidden]

Sorry no. I’m just trying my best to work it out myself. If you join the Facebook group “British Acoustic Neuroma Support Group” you could ask the question and all the people who’ve had surgery could already could give you recommendations x

[Russwebb in reply to Hidden]

Hello Clareha. I had my 4cm AN removed last April (2021) in Cambridge hospital by Mr macfarlane and his team at addenbrookes hospital in Cambridge. He told me I was 1/100 people suffering from complications of the surgery in the fact that the facial nerve was obstructed by the tumor itself and so was hard to access completely. Consequently 1% 'onion skin' had to be left to avoid damaging the facial nerve too much. The right side of my face is still paralysed one year later but many people say there is a vast improvement. But one never sees it themselves as I don't. I still get my inspiration from the actor Mark ruffalo and how he recovered from his AN removal in 2001 so lots of walking and facial exercise is the order of each day for me.I'm actually going to be doing a sponsored walk from Colchester to Ipswich on 1st May to support hospitals in my area and to give me the push to train and to get myself back on the right track physically and mentally. I'm 61 in two days time and the night (my life) is young as they say!

[Steve_04 in reply to Russwebb]

Hi and what a coincidence I to had mine removed by Mr McFarlane on April 7th 2021. He couldn’t removed it all, said he left a slither which was later recorded as 1.3 cm x 1.1 x 1.5 of what was an 4cm x 2.5 cm but I do feel mine had fast growth as April 2020 my health was fine until I had a car accident and immediate pain behind the ear and in the months coming on symptoms coming quite rapidly from hearing loss/ tinnitus/ leg numbess facial numbess. He did do a good job considering mine was 17 hours long. Teddyandjock One thing I can share from my knowledge Cambridge and Manchester royal Salford are supposed to the the best in the country for AN’s.

[Myangel95-12 in reply to Hidden]

Hi there, I’m under Cambridge addenbrookes, mr axon, mr duke and mr Donnelley are the main people I have seen, most recently Simon duke, who has recommended I have radiotherapy now since my tumour has grown from 9.5mm to 16mm in less than 2 yrs with no growth in the previous 8-9 yrs since diagnosis.. before hand I was watch and wait… it can be slow process depending on size effects it has on you etc etc… but good luck with whatever consultant you go with.

[flappers in reply to Daisymeadow]

Hi Daisymeadow, I wondered how you were getting on. Seems mine has caught up with yours in a short space of time size wise and I will also be having treatment, I am thinking it is likely to be surgery over radiotherapy. I shall find out when I see them at Kings on 4th April. Good luck with your surgery, I wish I was under Salford, they have the best rep!

[Daisymeadow in reply to flappers]

Hi flappers,Sorry to hear you’re at the treatment stage. I’d reached the point that I had got my head round waiting and hoping for the best. It was quite a shock to be advised to have surgery. But we just have to trust the specialists in the end. It’s actually quite a relief to have a decision made and feel like I’m doing something about it now. But if I’m honest, the thought of surgery and the potential outcomes has me nervous. Wishing you all the best. Keep me updated. Looks like we’ll be having surgery around the same time if that’s what you decide.

[flappers in reply to Daisymeadow]

Thanks Daisymeadow! Yes, same here, in a way I hope there is a very clear 'one option' regarding treatment as trying to decide for ourselves is a bit tricky, not being a neurosurgeon or oncologist! It is all pretty daunting but trust we must (whilst also being as proactive as possible about getting good aftercare in place and asking the right questions). Take care, let me know when you have a date etc...Lin

[Hidden]

Hi which surgeon are you seeing or don’t you know yet. Are there any specialist surgeons in this area?

[Kristyll in reply to Hidden]

I was looking to see which area of e Ellen e is your nearest if I knew your area x I ran. BANA group in Manchester for 19 years

[flappers]

Hello, it's a bit scary isn't it!? Yes, very similar happened to me, diagnosed in Sept 2020 with relatively small 1.5 x 10, follow up scan February 2021 only showed 1mm growth so expected only a 2mm average growth on this February scan, for it to be 1.8 x 2.2 now, so a lot of growth in a year. I am due to go to Kings to discuss treatment option on 4th April. I truly expected the same slow growth as last time, so am a bit discombobulated! I have a friend on here who opted for surgery a year ago on a similar size to mine is now and whilst she could have watched and waited, she is doing pretty well now so it has given me some confidence. All treatment can have its tricky side affects but so can leaving a growing tumour. I guess we have to trust in the advice of the team. Good luck with the surgery, I think we have to try and be as healthy and fit as possible before going in and ensure we truly give ourselves time to recover. Be kind and nurturing to yourself. Good luck.

[Teddyandjock in reply to flappers]

Thanks flappers

[Skipton]

Hi, I had Radiosurgery on Tuesday this. Week at Christie’s at Salford Royal. My AN was identified 3 years ago, it has grown to 20 x 10. mm. The procedure on Tuesday went to plan, I am scheduled for a meeting in 6 months. I was on a small course of Steroids, I feel very tired today, so feet up for a few days. I have been told that this procedure has a 95% success. I am very grateful to Salford Royal. Mike Bradley

[whitefishbay]

I'm glad I found this sight but it's scary reading. At my apt I was told not to worry that 5mm AN probably won't grow 'we will just watch it'. Doesn't look like this is the case. Good thing there is HU for further info. The registrar told me NOTHING.

[E-Mforlife in reply to whitefishbay]

Hello. I am so thankful I found this forum. It has really helped me in my journey of learning about this AN and giving me hope through others experiences. I was recently diagnosed in Sept 2021 with a 6mm AN. Although small, I had hearing loss, fatigue, headaches and head pressure, and terrible vertigo that lasted almost 3 months daily. It was horrible! They were going to rush me into surgery 5 days later but then opted to watch and wait with other stronger steroids and vestibular physical therapy to help with my balance issues. Thankfully the treatment has helped. I currently have minimal dizziness when turning to the left, (side of AN), some hearing loss and occasional tinnitus, some head pressure. I go back April 28 to get MRI and hearing testing done to see potential growth. Hoping for the best and that growth is minimal to none. Will keep you posted

[Bizzyhazel]

Hi there . Yes my AN has grown fast too .

I’m hopefully in for removal on 2 aug at Salford Manchester .

Hope your managing your pain ok

And hope your able to carry on doing some nice things still in life .

Enjoy your weekend . 🌸🌸👍

[Kristyll in reply to Bizzyhazel]

You couldent be in a better place, good thoughts and good luck

[Bizzyhazel in reply to Kristyll]

Soz that was meant for teddy and jock 🤔🤔😘👍🌸 forgive me I wasn’t wearing my 👓 x

[Teddyandjock]

My surgery has been postponed now. Does a yone know if I can get it done privately somewhere in the North, I am in Leeds?

[Bizzyhazel]

hi teddy and jock .

I’m now 3 months post op . My A N had got to 27mmx 22 mm . Still have very small bits remaining on my face Nerves .

Just taking everything nice and steady and slowly away .

Still not back to driving , but we will get there . Keep positive jock . Have you got an op date yet ?

[Teddyandjock]

I had my surgery on 6th October, nearly 12 hours op, in hospital for 8 days as my right arm wasn't working post op due to a pinched nerve. To be honest I think my recovery so far has been very good. I have had no pain at the wound area at all. I have facial paralysis but no dizziness that I can't deal with. Mr Deniz was my surgeon and was brilliant, he removed the whole tumour thankfully. I have stayed in bed as much as possible to give myself the best chance to allow my body to repair and adjust. Now just starting to do a little bit.