Just found out about my AN: Hi all I'm... - Acoustic Neuroma ...

Acoustic Neuroma Support
1,175 members357 posts

Just found out about my AN

DavNK
DavNK
24 Replies

Hi all

I'm posting here because honestly I feel a little alone and don't know where to turn (my wife has been fantastic but can others really understand what I'm feeling?).

I got diagnosed with an AN a few days ago after months chronic (yes, I mean 100% of the time) feeling off-balance and a little sick. It's most pronounced when I go walking on the pavement or move too quickly (it's a lot better if I'm sitting still and reading a book or watching tv). It's not yet debilitating at all; I still go through my daily routine -including walks, treadmill, gym, but I feel slightly dizzy going about it.

Has anyone else felt the same?

I have been referred to an ENT for a hearing test; I don't notice any major hearing loss myself, but my wife says I speak loudly a lot and sometimes I don't hear well. My neurosurgeon told me to expect the heart to get worse with time.

As the tumor is currently only 8mm in diameter we've decided on a wait&wait approach. I'm a little worried as I went from feeling great 3 months ago to chronic dizziness and I'm scared this is only going to get worse! The surgeon said that eventually should I decide to treat I'd be a good candidate for GK but that any treatment for AN is unlikely to improve symptoms I was feeling before (he said that honestly it usually ends up worse). I'm just *really* scared of having permanent, disabling vertigo (that would be a terrible life sentence for me). My current situation is horrible but (probably) bearable and understanding that GK or surgery is unlikely to make my situation any better is depressing.

I'll almost certainly have to have something done at some point (I'm 35, basic arithmetic says that if it grows at the best cast of 1-2mm / year I'll need to treat) am just wondering if it's better to do it sooner than later and arrest the progression now when it is still relatively small or hope for the best that it magically doesn't grow again in the next 50 years (seems unlikely).

I feel surgery isn't a great option for me. I'm very scared of these things and outcomes don't seem to be better than GK?

I have a followup MRI in 6 months am just very worried that I'll be leaving it too long and then it'll have grown really big and things will be worse. I know that it's unlikely to grow that much in this time frame but I went from feeling perfect to terrible in 3 months, I cannot imagine what might happen in 6 months time!

Does anyone have any thoughts on the watch&wait approach?

Has anyone felt the same symptoms as I have and had GK treatment? Did it get much worse/any better?

Did anyone have treatment at my age many years ago and has had good outcomes?

24 Replies
oldestnewest
dcfcram

Hi DavNK, I was diagnosed with a A.N in Feb 2017 aged 52, I noticed my hearing on the left side had detiorated. It was 12mm when I had the mri scan and was advised to watch and wait. I had another scan in Feb 2018 and was told it had grown to 18mm, my hearing had got slightly worse and I too was worried. I was told I was a good candidate for GK surgery as my tumour was relatively small. I had GK in july at Sheffield. I had a frame fitted to my head and then had a mri scan. The tumour had grown to 21mm . I was then sent for GK treatment shortly after the scan ( about 1 hour ). I had to lie in the machine for about an hour while the machine delivered the Gamma rays to the area required. As soon as it was finished they removed the frame and an hour later I went home, it wasn't a nice experience but it wasn't half has bad as I had expected and didn't have any problem with any of the procedure. It's now Dec 2018 and the hearing is no better and the tinnitus is worse, this is to be expected as it can take 6 -12months to settle down. I am due to see my consultant in Jan at QMC Nottingham and will need another Mri around july 2019, I just hope it has worked. It sounds that you have been diagnosed early so hopefully you will get sorted out . I have come to terms with hearing loss on my left side and get slight dizzy spells occasionally, but I am hopeful the GK has been successful, good luck with your treatment if you need to have any but stay positive and you may not need anything done as some AN stop growing altogether, you will probably have scans yearly to make sure all is well. Hope this helps and all the best

Reply
DavNK
DavNK
in reply to dcfcram

Hoping your treatment was a success as well! I hope your symptoms ease up. Will you keep us updated either way? I'd personally really appreciate that - even if it's bad - at least it'll help keep expectations realistic.

Did you ever get any of that horrible vertigo that my GK pamphlet says can happen in the first 6 months?

Reply
dcfcram
dcfcram
in reply to DavNK

No , never really had any balance issues, just hearing loss and tinitus

1 like
Reply
Leodo

Hi, agree with dcfc ram, it looks like you have been diagnosed early, that has to be good news. Think the watch and wait policy is because everybody has individual reactions, some do not grow at all, as long as you keep a close watch on it they should be able to take the best action when appropriate. Hope all goes well and it’s always good to talk. Gamma knife is nothing to be frightened of if required.

Reply
Jerrycat13

MY ACOUSTIC NEUROMA IS 20MM. IM ON WATCH AND WAIT. HAD A MRI IN NOV AND IT HASNT GROWN. THE RINGING IN MY EARS IS BAD BUT I WAS GIVEN A HEARING AID AND FIND THAT HELPS. MY HEARING IS QUITE GOOD. MY BALANCE IS NOT TO BAD BUT I DO STUMBLE SOMETIMES AS IF IM DRUNK LOL. MINE HASNT GROWN IN A YEAR SO IM STAYING ON WATCH AND WAIT. SO AS YOURS IS ONLY 8MM I WOULD STAY ON WATCH AND WAIT.

Reply
DavNK
DavNK
in reply to Jerrycat13

How did you find out that you had one? Just from the ringing? I get this too occasionally (more like a high pitched whine) and it's horrible but it goes after a few seconds each time for me. Does your ringing do the same?

Reply
Jerrycat13
Jerrycat13
in reply to DavNK

My ringing in the ear never stops. I have it 24/7. Thats how i knew i had this tumor as the constent ringing sent me 2 the doc. And he set me for a mri

1 like
Reply
drdeanbellavia

DaveNK:

Luckily your symptoms occurred with only an 8mm NR, not later. The fact that your balance is disrupted and no hearing loss it seems that the information from your inner ear is getting distorted from your AN, but the AN is not large enough to cut off the blood supply to your cochlea; the usual cause of permanent deafness (dead hair cells). It is important to know where the AN is located. If it is in the bony area between the inner ear and brain (called a vestibular schwannoma), any growth (say more than 10-15mm) can cut off that cochlea's blood supply. It took less than a month for my left ear to go from perfect hearing to deafness. Before that terrible month I had dizziness as you described for about a year and much worse after that month. Bottom line, find out where it is and if in the bony area get your GK surgery very soon. If not in that area the urgency is less important.

The purpose of invasive surgery is to remove the AN (not recommended) and the purpose of GK surgery is to kill the AN 's DNA. After my GK surgery the AN has shrunk 35%; it is still there, but dead.

An AN knows no age, it's probably a genetic thing, maybe brought on by a past injury. I had a motorcycle accident at age 21 with a concussion near my left ear; 35 years later I got my AN.

Other than determining where the AN is located, you CAN do something about the misinformation your cerebellum is receiving from your AN inner ear. I developed a set of exercises a few months after my GK surgery to reset my cerebellum (somatosensory system) that eventually restored my balance; it about a week doing them 2-3 times daily, then doing them once a day for a few weeks and then weekly (or as needed) after that. Today (16 years later) doing them once a month, or when my balance is off, is sufficient. You can download the exercises at:

thebioengineeringco.com/ind...

Other aspects of an AN are deafness, tinnitus, memory losses (from all of the "static" in your brain) and cerebellar pain from an over-worked (over-heated) cerebellum trying to figure out how to keep you in balance.

If I were in your situation, knowing what I now know, I would get rid of my vastibular schwannoma immediately. But if yours is just an AN outside bony area it is not as urgent.

Dean

Reply
DavNK

Many thanks Dean. I don't know exactly where it is on the 8th cranial nerve but it is a vestibular schwannoma (I think that's what acoustic neuromas are really called). On the mri the surgeon showed me that it's still a few mm away from my choclea but said that I can expect hearing loss no matter what I do (gradual or sudden) either from the tumor itself or from GK treatment (he said that whatever hearing I make it through the 1st year after GK with its possible that will be it for life). I'm more concerned currently about dizziness (and vertigo). For example the past 2 days were terrible, even walking on the road made me feel sad and depressed. I went out to a restaurant with the wife and kids today and after the 10 minute walk there I didn't want to eat because of the dizziness. I'm wondering if your exercises could help me already perhaps? Or do I need to wait for it to get worse/do the GK first?

I don't want to rush in to the GK because even though I know I will need it eventually, the surgeon said that realistically it's not going to cure my dizziness (and might even make it worse - at least until my brain learns to compensate). My wife is pregnant with our 5th kid and if the year after GK is terrible I cannot burden her with an invalid husband and another baby to take care of. She's amazing but I'm already slowing down in helping with the kids (eg I no longer drive on fast roads even though I have never blacked out or lost control I no longer want to take the risk as it has been getting progressively worse in just 2-3 months).

Am I the only one here with chronic dizziness symptoms? It seems from others that most experienced this either before or after treatment but wasn't chronic (I.e. All day every day with no stopping unless I am lying down absolutely still and even then it's not perfect). Do I really need to come to terms with the possibility of living with this feeling or worse for the next 50 years? It's so depressing, honestly I don't think that I can (I know people have worse illnesses and I should be grateful but it's really effecting my quality of life; I struggle to enjoy time with my young kids and I just feel terrible as they energetically zoom around).

Reply
drdeanbellavia

DavNK:

You seem to have a more severe case of dizziness that I did, so the sooner you start doing the exercises the better. One AN woman told me that she started doing the exercises long before her GK surgery and found relief. If I were you I would start the exercises immediately. Make sure that you read the PDF in the above link that more fully describes the exercises, which are only partially showed on the video. It isn't easy to do the exercises the first few weeks. You will find it difficult not to fall while doing them, but eventually you will gain control over the exercises and thus over your dizziness. Are you experiencing heat and/or pain in the back of your head (cerebellar area)? This is a sign that the exercises need to be done to reset your cerebellum in the three planes of space. The exercises help you to individually retrain your cerebellum to recognize the three planes of space that your semicircular canals is sending them information about.

I disagree with your surgeon's prognosis. The GK surgery in my case had no effect on my symptoms after surgery. I had my GK surgery in the am and fixed a flat on my wife's minivan that afternoon. The GK surgery is not a big deal if done right as far as I am concerned, and I was 58 when I had it done. I was just as off-balance after as before; it was only the exercises that relieved the dizziness, pain and mental confusion.

I also disagree with your surgeon on definitions; not every AN is a VS, and vice versa, VS are just the ones in the bony vestibule near the cochlea. Since the GK shrinks the AN, it puts less pressure on the other nerves and arteries in the area and has less of an effect. This is especially true in the bony vestibule

I hope that all of this helps,

Dean

Reply
Minnow1

Hi mate :)

I noticed something was wrong when my hearing in my right ear was deteriorating and also my ballance.

Went for hearing test then ear nose throat doc and sent me for an mri wich took an hour.

All in all i was diagnosed with accoustic neuroma , It was 32mm big and needed to be operated on asap.

Had the opp and was in hospital for 2 weeks.

Symptoms i have now , dizziness , bad tinnitus , 90percent tastebuds not working , deafness in right ear , right side of face dropped but now coming back , nervy feeling in head.

Memmory is bad now and also hard to concentrate on conversations.

I also get very tired , like someone takes your batteries out so u really need to plan your day.

its been 6 months since my surgery.

If you can do gr when its small , might be worth it.

If you have any questions happy to answer them.

Reply
DavNK
DavNK
in reply to Minnow1

I'm sorry to hear about these awful symptoms! I really hope that they get better with time. Will you please keep us updated?

Reply
Minnow1
Minnow1
in reply to DavNK

no worries , im sure yours will work out fine , allot of people ive talked to are different. Recovery rates also vary from 6 weeks if your lucky too 2 or 3 years. Although the recovery is enough to start working in most jobs people seem to get slowly a little better until you hit a cap over a year or so , then find ways to deal with some problems you are left with.

It realy is different recovery times for each person , it varrys so much depending on size etc.

Good luck !!

Reply
drdeanbellavia

Minnow1:

You might also find the above-mentioned exercises helpful for your balance and memory.

thebioengineeringco.com/ind...

Dean

2 likes
Reply
Drex74
Drex74
in reply to Minnow1

Hi mate

Interesting to hear you say about memory, my AN was 40mm when discovered, I had 2 eight hour operations in the space of 9 months the second one being 8 months ago. I’ve now been told I may be looking at a third, more aggressive op as they think it might be too vascular to be affected by GK.

I have all the normal post op conditions you read about but my wife and I have also noticed that I forget simple words or I say things like “ put the bag in the shopping” I assumed this was coincidental as I had read nothing on this so just wondered if your experience is similar?

Cheers

Reply
Minnow1
Minnow1
in reply to Drex74

Hi mate ,

I have had some tests done and my verbal memory is very poor.

One of the tests was to remember any details about a paragraph read to me with a lot of details about people , the weather , the city etc , things to remember.

Out of approx 50 things in the story i remembered maybe 2 things.

When asked true or false questions about the story i remembered and answered correctly the same couple of things , the rest i guessed and had no idea weather the true or false questions were correct or not.

All in all i failed badly.

i tried to remember things but its as if i can handle 2 things to remember then if im asked to remember more then i will forget the first 2 things and remember the next 2 things.

I also forget simple words occasionaly that will halt my conversations.

I am trying to go back to work and now always carry small notepads in my pocket to help remember tasks at work.

Hopefully other symptoms go away but they get worse very easilly if im too active like work more than 3 or 4 hours.

Its truly very trying you haveing so many operations , you must be a verry strong person mate.

Good luck and stay strong ;)

Reply
Drex74
Drex74
in reply to Minnow1

Cheers mate

Sorry to hear you’re having it so bad, sounds like your memory situation is a lot worse than mine, all the best for the future mate and wish you well

Reply
6625

I was diagnosed with a AN in 2015 I lost my hearing in my right ear also suffered numbness in side of my face ..bad head aches n vertigo..my an measured 28mm was told it was to large to GK so in June 2016 I had operation to debulk my AN ..was in theatre for 10 hours .now 2 years on my AN is 10mm I was getting scans every 6months but now every 12

Reply
Bob36

Hi DavNK

I can't remember specific dates, but first noticed symptoms when I was pregnant with my 2nd child (2008). I had an intermittent buzzing in my left ear. Drove me mad! Thought it was to do with my pregnancy so left it, saw my GP shortly after I gave birth who referred me to an ENT, that ENT was useless, told me it was likely to be tinnitus and come back in 6 months if was still bothering me! Progressively the buzzing/humming got worse and I started feeling a bit off balance and had headaches on the left side. I generally felt off, just not right, I was miserble with it, head swimming, feeling out of step with my body, pain etc. Having had a baby I kept putting off seeing the GP again, but my osteopath (who was working on the pains in my head and neck) basically told me she was certain it wasn't muscular or baby tiredness and to go and get it checked! By this time it was 2011 (I know, a long time to wait!).

I insisted on seeing a different ENT who was great, MRI was booked and the AN was discovered. Mine is a vestibular schwannoma, I don't know all the differences sorry. I had 6 monthly MRIs to monitor its progress, then in 2013, as it was still growing at a small rate, I had my hearing and balance checked, I had lost 68% balance in the left ear but my hearing was pretty good. It was decided that the docs needed to halt its progress now before it became too big, I was given the option of surgery or gamma knife - I chose GK.

Since the GK (April 2014) , I have had regular MRIs (yearly). This April, they are happy for me to go again in 2 years and they think it has settled - there is a lot of swelling of the AN after radiation so they can't tell if it's worked for a little while. The GK itself was uncomfortable but over in a morning, had a huge headache afterwards (when they took the frame off), but I would absolutely recommend it over brain surgery!

Since the GK, my hearing is worse (I've been told it's inevitable that I'll have severe/total hearing loss) but my balance problems are settled, my body has compensated quite well. I can still get off balance but knowing what was causing it was such a relief that it doesn't worry me.

Speak to your ENT, explain your concerns over leaving it, they will advise you. My symptoms were not as severe as yours but I know I was miserable on occasions (over a 3 year period), my family and GP thought my symptoms (dizziness, panic attacks, nausea, not sleeping, pain in my neck and head and a twitchy left eye) were anxiety and depression. Getting a diagnosis was a massive relief.

Hope this helps you get some answers from your ENT.

Reply
Stucoo

Hi, I was diagnosed just over a year ago and also have 8mm AN and am watch and wait. I have learnt that everyone’s journey is different and that the location is a important factor, not just size. I was also told that 60% don’t grow after being discovered, so I’m taking that as a positive. If not I will have GK. I suffered from vertigo for about 3 months but it settled down, but I believe anxiety and stress exacerbate the symptoms. I also have tinnitus, balance issues and some hearing loss. There are some good Facebook pages as well where you can talk to other sufferers.

Hope this helps

Reply
DavNK
DavNK
in reply to Stucoo

Thanks Stucoo. It really did help; in nothing else than to know that there might be some light for me at the end of the vertigo tunnel. I have joined some Facebook groups as well and they have been a big comfort for me. Do you know where your AN is? If you also suffered vertigo, maybe ours is in a similar place?

Reply
Scubagirl

You might ask your surgeon or ENT for a referral to a vestibular therapist. They are trained to help with this type of dizziness, training your brain to compensate. Helped me tremendously.

2 likes
Reply
IA786
IA786
in reply to Scubagirl

Thanks very much, I will do that

Reply
Jerrycat13

Mine is 20mm and im on eatch + wait. Just had yearly scan and it hasnt grown. So im leaveing well alone. Will have another scan this year.

Reply

You may also like...