Just Diagnosed: Hi, as the title says I... - Acoustic Neuroma ...

Acoustic Neuroma Support

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Just Diagnosed

Stucoo profile image

Hi, as the title says I have just been diagnosed with an AN (8mm in my right ear canal). I have been suffering from Tinnitus for just over a year, which started after I began taking medication for a heart arrhythmia. I blamed the medication for the tinnitus and even though I changed meds it continued but didn't really bother too much. It wasn't until I noticed some hearing loss that I had my hearing tested and was sent to my GP and then to ENT and had a scan. I have now been referred to Addenbrooks.

The last 18 months have been like a bad dream with my heart diagnosis and now this. I'm confused and scared as to what the future may hold, I'm only 48. How do you cope with this diagnosis?

Stuart

17 Replies

Hi, I was diagnosed with a 9mm AN back in February. I was in total shock. I started having tinnitus the previous summer. After being referred to ent I had a hearing test and had marginal hearing loss. I was sent for an mri and the AN confirmed. I am currently on watch and wait with another mri scheduled for February. Hope this helps. Damian

Stucoo profile image
Stucoo in reply to JDWYER1980

Thanks for you reply Damian. I have some high frequency hearing loss as well.

Hi, I was diagnosed 2 years ago with a small 12mm right sided AN. I have tinnitus and 70% hearing loss on that side and also some mild hearing loss on the left (not connected). I have hearing aids which I find useful in some situations but do not wear them all the time. I am on w&w and have annual MRI scans. Just waiting for the results from my last one and am hopeful, as I have had no growth so far since diagnosis and no increase in symptoms.

The main thing is to try not to panic or worry. Chances are with a small AN you will be put on watch and wait, with annual scans until it is established whether your AN is growing or not. if there is any growth it is usually very slowly so no need for any rush to have treatment. Hope this helps put your mind at ease a little. Mags

Stucoo profile image
Stucoo in reply to maggieL

Thanks fro the reply Mags, as you say I should try not to worry too much and wait until I see the consultant. Do you get to the stage where you forget about the AN and get on with your life?

maggieL profile image
maggieL in reply to Stucoo

Hi, Yes I am fortunate that it is small and doesnt need treatment. The deafness and tinnitus can be annoying but life is for living so I just get on with it and try not to worry about what might or might not happen in the future. Mags x

22_D profile image
22_D in reply to maggieL

Hi mags ... I'm new on here , I've had a mri which was inconclusive , so I've gotta go have a contrast mri... On th 30th Dec I have slight ringing in my left ear , & slight balance problems , I don't mind saying I'm scared of what this mri I going to show up , I've been reading the posts on here & your just stands out ... What a strong lady you are , I've put my life on hold at the minute , I'm still going to work ,but my social life has stopped any guidance please xx

We are all still here to tell the tale. Try not to stress until you know all the outcome, I know we wear ourselves out worrying. There really are worse things when you can look back. I went through all that age 35 over 30 years ago.

Stucoo profile image
Stucoo in reply to Kristyll

Thanks for your reply. It is reassuring that others have been here and come through the other side and that your are here offering support.

Hi Stuart. The tumour is not in your ear canal but more wrapped around your auditory nerve - also known as a vestibular schwannoma. I'm also 48 and have just had my 8th annual MRI scan. I had my tumour removed in 2009 and have a small part of the tumour left, hence the annual scans. Yes you will get to the point where you stop thinking about it. Try not to worry. I'm completely deaf on my right side and now have a BAHA which helps a little. Regards. Linda x

Hi Stucoo I was under Addenbrookes 11 years ago for a left side AN..... brilliant skull based surgeons ..it is a centre of excellence, people come from all over the world for treatment there, I asked my surgeon how many of these type of ops he had done his answer was thousands....they are wonderful you are in very safe hands truly you are.

Hi Stuart, I can't tell you how YOU should cope with this, but here is the story of how I coped with it. If you read it it may help you. Happy to answer questions, but to give you the obvious answers (1) I am still fine (apart from being deaf on one side and having tinnitus) 20 years later (2) although I had to adopt a few coping strategies, I did not have to give up work and was indeed promoted a couple of times before retiring. Take a look at anarchive.org/chris.htm

Hey, Stuart. Addenbrooke's was where I had surgery and the team there are great.

I'm not going to kid you that it's all a breeze - mine was pretty large (>40mm) and absolutely had to be removed. It's not been easy, but I found the biggest difficulties were psychological. Getting into a tough mental attitude helped me shrug off a lot of it.

When I got the diagnosis last Christmas my world felt like it was swimming around me, but the most important thing I held onto was that my doctor made it quite clear that it was a benign tumour. I held onto that knowledge tightly, and I'd recommend you keep telling yourself that - it sucks but things could be worse. Survival rates for a diagnosed AN/VS are excellent, and I've read, like maggieL has experienced, smaller tumours can slow or completely stop growing - they don't have to develop further.

Even after having a large one surgically removed, I'm less than a year post-diagnosis and my life is getting back to normal. Try not to let the worry eat you up. I'm sure you'll be ok.

Hi, I was just wondering and hoping you could maybe answer a question on my mind? I’m also with Addenbrooks and was told that surgery would leave me completely deaf in that ear and balance in that side will be completely removed/damaged? Is this true? Obviously to me it must be as they are the experts , but it has shocked me 😱

How is your hearing and balance now? Mine were severely damaged before surgery.

I'm afraid that is a good chance of happening. Balance nerve - vestibular - is where the tumour forms so is the first to be significantly damaged. You slowly reprogram your brain to cope after surgery. It's unpleasant but after about a month mine was a fair bit better than before surgery. Still improving.

Hearing nerve - cochlear - is apparently not very strong and if you already have hearing loss it's unlikely to improve after surgery. I was told the safer surgical approach (translab) for me would most likely destroy that nerve but my hearing was already significantly compromised so not a big loss. It took some time to adjust to that as well post surgery.

In the grand scheme of things these are not life shattering. I'm a very sound-focused person: CROS hearing aids help a lot at work and you'd be surprised how much your brain can readjust even without them - I can still hear some stereo effect from my HiFi and my right ear is 100% deaf!

Discuss the surgical routes with your consultant. I think there are approached that can improve your chances of preserving hearing but have their own risks.

Thanks fir coming back to me, tbh they didn’t elaborate on how they would operate only that I will definitely lose all hearing and bajance, obviously I will go in more depth with them if the tine arises that I have to have surgery but has unnerved me by them saying this and others are saying u can get some hearing back?

Hearing loss is 60% abd bajance not greatest on stemetil presently until clinics help... told hearing aids do not work as Tumor is blocking, which in turn leads me to ... if Tumor removed = no blockage= hearing back,? well at least a bit more, I can ask these questions I am sure if arises but curious 👍

Since your AN is only 8mm you might be able to save your inner ear, especially if it is a vestibular schwannoma that grows and cuts off the blood supply and 8th cranial nerve to your right inner ear. If it is, it will get much worse as time goes on (loud tinnitus, deafness and balance problems; it will not go away and needs immediate attention. Since you have not mentioned balance problems yet it is encouraging; I lost my left ear hearing and balance when my vestibular schwannoma grew to 15 mm. I had Gamma-Knife Surgery in 2001, which only took 18 minutes in the morning and I was home changing a tire that afternoon; I was not interested in a debilitating recovery from knife surgery. My now dead tumor shrunk 32% in the first 12 months and has stayed that way. I wish I was as lucky as you and had found out when it was only 8mm. Please look into this now, worrying about it will do it and your heart problem no good.

I had the same problem but the meds didn't course my tinnitus

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