Diagnosed today with an acoustic Neuroma.

[Reddington__]

Hi Everyone. I have just been told this morning that my MRI confirmed an acoustic neuroma. The ENT Doctor said he is now referring me to a specialist in Manchester. Can anyone tell me what to expect now ? Did anyone have any treatment for it ? Thank you.

[Shantelle00]

Hi Reddington. Sorry to hear the news. Hopefully, you are now able to get the help that you require and that this forum can assist. If you don't mind me asking, how long were you waiting for your Mri results? I had an MRI last week Monday after being referred by ENT. I'm a bit anxious with the waiting. Thank you.

[Reddington__ in reply to Shantelle00]

Hi Shantelle , Thank you for your reply . I had my MRI on New years eve 31st , received a follow up appointment letter around the 3rd or 4th and saw ENT today . So 10 days . It was very fast . I hope you don't have to wait long , I fully understand the anxiousness. I now have another wait to see the specialist.

[Karbob]

Hi Reddington, sounds like you will be sent to Salflord Royal. Your treatment depends on size and symptoms. You can just be put on a watch and wait, which means they rescan every 12 months. How long you have to wait to see them? Don't think anyone would be able to say, that again I would think will depend on size and symptoms. I can say that I found the British Acoustic Neuro ma Association (BANA) excellent.. They meet at Salford Royal. Karen

[Reddington__ in reply to Karbob]

Hi Karbob, Thank you for taking the time to reply. I'm sure the ENT said it was Salford I was being reffered to so you are correct. He also told me the name of the Specialist but I can't remember, it was a lot to take in . Hopefully the appointment won't be too long . I will definitely check out BANA. Thank you again.

[flappers]

Firstly I would say try not to panic. There is lots of support out there and of all the terrible brain tumours out there, these little squatters are something we absolutely can adapt to living alongside, and there is treatment available. I’ll tell you my story so far, but we are all different and I am definitely living my very best life with it.

Diagnosed Sept 2020, 12mm AN, due to a sudden onset of persistent screaming tinnitus in one ear. Watch and wait, second scan at 6 month mark, and during that time started to have all sorts of other symptoms, like balance a bit affected, tiredness, pain in the mastoid area and hearing loss, twitchy face and a numb side of the head. I felt it must have grown but in fact the follow up scan showed only 1mm growth. Over the following year I got used to the tinnitus so it bothered me less, the hearing aid helped with a tinnitus masker, and generally I felt better and less tired, although I wasn't working full time, and basically decided to take my work pension at 55 and work as a consultant part time, I knocked off things that caused me any stress and spent a lot more time nurturing myself and doing things I loved doing! I also believe that the tinnitus and hearing loss and pain is absolutely exhausting, but in time we adapt and notice it less, and therefore the fatigue this causes absolutely does lesson/go away. But overloading my brain and working full time in a very very high pressure job felt not very helpful, it is hard to nurture yourself enough to counter the effects of it all. Anyway, I then had a scan in the Feb of 2022, expecting it to have stayed same size as I was feeling fine, and the tumour had nearly doubled in size, I was very surprised, as it had seemed a slow grower before that which they almost always are. I was given option of radiotherapy or full surgery, and by this point accepted that neither would make the tinnitus go away, and invasive surgery could bring a more difficulties, however it did need something doing, as was 25mm and starting to point into the brain stem. I chose radiotherapy, which I had to have over 5 days in three sessions, at Guys, in June 2022. Had the first follow up scan results this December (they leave it 18 months under Kings/Guys as they say it shows swelling before it settles to see if it has helped stop growth.) It doesn’t yet show necrosis and still does a bit of swelling, but I know it’sa long game and feel fine about it. The whole journey has got easier, as i have adapted to the gift of having an AN, and I promise you that will happen for you too, as impossible as that seems right now. I actually don't think about it every day now, and I remember that first year or so it was so difficult. It is mindblowing to accept that sometimes doing nothing is the best option, as 40% don't grow more after discovery, and there is no easy fix, but that said, if you do need treatment it is available and better than ever was, I am sure. I think I managed really well with treatment and it was nowhere as bad as I thought it might be (I was scared about the impact of swelling, as it was so close already to the brain stem) but it was fine, a bit of a wobble around the 4 and 7 and 18 month mark, but steroids are on hand if needed to calm that down.

Are you a member of the Brainstrust AN group? Really helpful, and they offer one to one support, hypnotherapy, and peer mentors too. I think the biggest thing is to know you will adapt, this thing will NOT kill you, and you are not alone, there are a few of out here living our very best lives. I am about to go off to Thailand for a month again, have been dancing at festivals this year, and really can live with this. I didn't feel that way a year or so ago. Focus on looking after yourself and know you’re not alone. All the very best. Lin

[Reddington__ in reply to flappers]

Hello Lin, Firstly thank you so much for taking time to reply to me. Its very scary . You have certainly been on a journey. The tinnitus is so loud it in one ear it never let's up and also I have numbness/ pins and needles kind of feeling in my cheek. I assumed that that may be the start of toothache but now since the diagnosis yesterday and reading up on the condition, it may be a symptom of AN ? .

I like to run, but today I am feeling scared to do that incase I do damage, which as I say it I know its probably not possible. I will certainly join the Brainstrust group. And thank you again Lin. The support on this website has been great . Take care.

[flappers in reply to Reddington__]

Ah, you most definitely won’t do any harm running… I would say the opposite. Do all the things that help soothe you, and help you destress. This first stage of diagnosis is so awful and stressful, and is impossible to imagine that you will adapt… even to the crazy tinnitus. Remember that no question is a daft one, ask anything that pops into your mind. On here, or the Brainstrust group or other online support groups ( the British Acoustic Neuroma Support Group one on Facebook is excellent) But also remember often those on groups are people who have had maybe more of a tricky time, hence they are still part of the group, when many many others don’t give their squatter much thought at all. One day at a time. You are in the scary zone at moment and you’ll adapt. Let us know how you get on. Lin

[Reddington__ in reply to flappers]

Thank you Lin , That's reassuring. You are right about it being stressful. I might try a gentle run tomorrow, it might take my mind of the tinnitus.

[Joker2768 in reply to Reddington__]

Thank you Flappers for your detailed response to Reddington. Scary at the min getting your head around the concept that something is in your heading possible growing.

First question which I'll put to the consultant is WHY don't they offer radiotherapy at this early stage, my AN is 14mm, instead of watching and waiting?

My second question/statement is that I am/was part of BioBank and was asked and took part in a day of scanning back in November 2022, it was a shattering day but I thought I would do it, to help others! I have just requested to have these scans shared with my consultant to which I am waiting for a reply, the lady on the telephone was not sure but reading this blog, this is my right! The second part of this question, is that I am wondering if I have done my damage by taking part in this survey and this actual scan could have kick started the AN growth.

Final question DO HEARING AIDS help with the Tinnitus?

Kindest Regards

Nick Ryan

[flappers in reply to Joker2768]

Hi Nick,

It’sa lot to get your head around, I know! So, along the way I discovered a few things. Firstly they don’t offer any treatment in the UK ( unless they are so large as to encroach already too far into the brain stem and then need removal or are such a size that radiotherapy would only be an option for a short while) until they understand the rate of growth of your AN, because so many never grow after discovery, and all treatment options can actually increase some symptoms and don’t get rid of others. You can certainly ask the consultant and when you have the first follow up scan insist on radiotherapy at that stage, I am glad I waited, even though mine did have a grit spurt, because by then I understood so much more about our little squatters and was prepared. NOTHING you have done re cotton wool or scans have made this happen. I’d recommend Join BANA or Brainstrust to help you get more info on acoustic neuromas. Lin

[DH32]

Hi, I was diagnosed in October last year and referred to the MDT in Newcastle. So far I’ve heard nothing from them. The ENT consultant said it’s highly likely I’ll be on watch and wait so I’m not panicking about the lack of contact just yet. Salford may be quicker or slower but try not to panic if you have to wait a while.

How are you feeling about the whole thing? It can be quite a shock to the system at first but there is help out there. I’m speaking to Brainstrust and I’m about to join some of their webinars to see if that helps. Look up their website if you are interested.

Hope you are doing as well as you can be? Take care.

[Reddington__ in reply to DH32]

Hello DH32,Firstly thank you for taking the time to reply. You are right it's a shock and not easy to stay calm . The first thing the ENT doctor said yesterday was I'm afraid it's not good news . Since yesterday I have read a lot and of course this website and the replies have been amazing. I am going to look at Braintrust. You have waited since October it must seem like such a long time to wait . I hope that you hear something soon. Thank you again . Take care.

[DH32 in reply to Reddington__]

Hi again, just going through your thread and I’d agree wholeheartedly with Lin - if you like to run then run. In the short few months I’ve had symptoms I have found staying active helps a lot.

I’ve already adapted pretty well to my tinnitus but I still freak out at other new symptom. I’m just hoping I calm down to it all in time.

Hopefully you’ll be the same and you’ll get used to everything. 🤞I think the key for me is not panic (easier said than done).

[Reddington__ in reply to DH32]

Hi, Thank you for your reply. I am trying to stay calm and it's definitely not easy . Since finding out yesterday I have been panicking . Today I have been frantically gathering information. Tonight I still feel anxious but it is truly helpful with people's replies. I will take on board what you say and I'm definitely planning on a short run tomorrow . Thank you again .

[6625 in reply to DH32]

Hi I was diagnosed in Oct 2015 I was sent to Newcastle RVI I had surgery in June 2016 to debulk tumour which was 28mm,hopefully you won't have to wait long

[Healthcare23]

Hi , my husband was diagnosed in April last year after suffering hearing loss for almost 10 years . He saw Mr Crossman at the Royal Victoria Infirmary in June and was told he had to have an operation for a 3.5cm acoustic neuroma within the next few weeks . He had an 11 hour operation in July and was in hospital for 6 days . He had 5 months off work and is now almost back to normal hours again . Hope all goes well for you x

[Reddington__ in reply to Healthcare23]

Hello Healthcare23, Firstly thank you for taking the time to reply. Your husband has been on a journey and a fast moving one it seems !! From diagnosis to operation . It's reassuring to know he is now well enough to be at work again. It must have been such a worrying time for you both. Thank you again .Take care.

[Healthcare23 in reply to Reddington__]

It was a very worrying time , that goes without saying but other than a bit of dry eye on his a n side and a hoarse voice for a few months, he’s otherwise come out the other side relatively unscathed. It’s not for the faint hearted and the road can seem a long one but there are good outcomes too . Best of luck x

[DDwyer1]

Hi, do you know the size of the AN? I was diagnosed with a 9mm AN in Feb 17. I have been on watch and wait for over 6 years with annual MRI scans to check for any growth. There has been no growth in this time and I am now on 2 yearly mri scans after meeting the consultant last September. My symtoms are hearing loss and tinnitus. I lead a full and active life. I am a full time school teacher and enjoy regular exercise too. Kind Regards

[Reddington__ in reply to DDwyer1]

Hi , Thank you for your reply, It's reassuring to know that you have not had any growth in 6 years. I am not sure about the size of mine .Hopefully I will know more when I see the consultant at Salford. Not sure how long my wait will be ,hopefully not too long.

[Ranikhan]

Hi Reddington, sorry to hear I can relate to how you are feeling. It's quite scary being told you have an AN. My initial apt was cancelled but rearranged to Feb. I'm pretty sure if its Manchester it will be Salford Royal and you will be under the same team as me. I'm assuming you will have had a letter in the post I don't have mine to hand but it should provide contact details for the nurses. I spoke to one and she was really nice and helpful and a key message was AN symptoms and impacts vary from person to person, symptoms are not always dependent on size of the tumour as well. Googling and searching online may not always be that helpful. Though its straight where I went after I was told but on reflection I was honing in all the things that could go wrong.

Let me know if you can't find contact details for nurse and I will check who I spoke to.

Best wishes

[Reddington__]

Hi , Thank you for your reply. I have not yet received a letter from Salford. I am hoping that it won't be long before I get one. Please update when you have been in February. Take care .

[Ranikhan]

Hi hopefully it will come through soon but for info there's an email [e-mail] and secretary number 0161 206 9691.The nurse was able to tell me the size of mine and I will be on wait on watch, will have MRIs to monitor etc, so not really expecting too much from the appt but hoping it remains small and spares me any major symptoms!

Try not to worry if possible butI know it does take time to process what we have been told. This group is good source of support and one of the key messages I remember was be kind to yourself 🙂

I will let you know how I get on at the appointment.

Take care

[Reddington__ in reply to Ranikhan]

Hi Ranikhan, Thank you so much for that . I emailed them and received a reply straight away . They said they have received my referral and my case will be discussed at their team meeting next Friday, following this I will be offered an appointment. They aim for this to be within 6 weeks. Thank you again for your help Ranikhan x

[Ranikhan in reply to Reddington__]

Glad to be able to help and you got a response that gave some assurance that things were in hand. They do seem like a really good team.

[JDN57]

Hi Reddington. Welcome to the AN club. I was diagnosed in October 2021 after having sudden hearing loss in my right ear with very loud tinnitus. I had a telephone consultation in January 2022 where I was told as it was 11mm and probably been there a long time I would be on watch and wait with a scan at the 1 year mark. The MRI was on 20th October 2022 and even though I chased I didn't get my results until a letter arrived July 2023 some 8 1/2 months later advising the AN had grown 2mm and I would need another scan which I had in October 2023. I am now 3 months into waiting for the recent results. I would say try not to worry and it is a long waiting game but I do understand your concerns.

I have 92% hearing loss, tinnitus in both ears which are different sounds so masking is difficult and my balance is shot to pieces. I try to be kind to myself and luckily I retired last year but I miss most of my hobbies which were all balance related. Please let us know how you get on.

[Reddington__ in reply to JDN57]

Hi JDN57, Thank you for your reply. You have been on a journey with your AN. And such long waits for your MRI results., which must be frustrating. From the posts on here and elsewhere it seems the watch and wait is very common. It sounds like your balance is suffering. So far I'm just suffering from tinnitus which is unbelievably loud and I am dizzy when I stand from sitting but only for a second or two. I expect the outcome of my appointment will also be watch and wait . This website has been so helpful to me and hearing everyone's AN journey's is reassuring. I hope that you receive your latest results soon . Take care .

[flappers in reply to JDN57]

Oh just want to say to RDN57 you might be able to get a referral to a vestibular physio. You should be able to still do beloved hobbies! If you possibly can, get out walking as much as possible, keep your fluid/water intake as high as possible too as dehydration affects balance apparently ( who knew??). Really hope you can find a way to adapt and compensate so you can return to hobbies you love.

[Rubylav]

I've had mine since 2017 and it hasn't grown much so apart from a hearing aid Im just on watch and wait still. It depends on the size of your neuroma what treatment they will offer you so don't worry I've lived with it for 7 years now just developed unsteadiness have tinnitus and my hearing has got worse but like me you should be ine. Best of luck

[Reddington__]

Hi Everyone, Just wanted to update you . I now have my appointment to be seen at Salford Hospital first in 4 weeks time. It can't come soon enough. My dizziness is awful . I know chances are I will be on a watch and wait but at least Its start . Also I now have hearing aids for the screaming tinnitus. They help but I can't tolerate them in for long . I am trying to wear them a little longer each day . X

[Zombi4real]

hi, I’m sorry to hear about your diagnosis. I was diagnosed with an acoustic neuroma about 5 years ago. I have an mri once a year, to measure if the tumour is growing. I’ve been told that they will operate if it grows, otherwise they’ll leave it. I wear a hearing aid in my right ear. The sound in my right ear is low and distorted. I’m told that if they eventually operate, I will be completely deaf in that ear .

[Reddington__ in reply to Zombi4real]

Hi Zombi4real,Thank you for your reply. I have been seen now and as suspected I am having a further scan in June. I just can't tolerate the hearing aid. It sounds really tinny and strange, even though it does help slightly with the tinnitus. I have been referred back to audiology so I'm hopeful they can adjust the HA to improve it . Can I ask has your tumour grown in the 5 years since diagnosis? And have your symptoms got worse or stayed the same ? X