Acoustic Neuroma Hearing Loss

Banoi

So, it’s been just over 5 months since my Cyberknife and I thought I’d post an update. My last update was about 2 weeks after the procedure. My symptoms stabilised at about the same level as pre-CK. I was able to go for a run, hike and work in the garden, although I found I tired quicker than I used to.

At about the 4 month point my tinnitus became very loud, balance worse with dizziness and nausea. Any activity seemed to exhaust me. My symptoms would progressively worsen as the day passed and I got more tired. Most nights I’d collapse into bed early. It was definitely not the result I’d been hoping for. I was prescribed steroids which helped a bit but I was not doing well. This lasted almost a month and then I started feeling a bit better. The dizziness eased somewhat and the nausea passed.

So, 5 months after the CK I had a follow up MRI. I was somewhat concerned but the result was good. Gizmo was showing signs of necrosis and was not any bigger. I was relieved. Unfortunately I’m still battling with the symptoms I had before. My tinnitus is still loud, which is really distracting, I’m almost deaf in the affected ear, although I can make out a loud sound, just not individual words. The dizziness seems to be worst when I’m tired but at least the nausea is not constant. The full feeling in my ear is also still there. I have to be cautious when walking on uneven ground or in the dark and I have fallen a couple of times, thankfully not hurting myself. The consultant seems baffled by these symptoms. I was wondering if there is anyone in a similar situation post-CK?

On the whole I’m glad I did Cyberknife. It is an easy and painless procedure and it has done what it promised, the neuroma has stopped growing and hopefully the necrosis will continue. Perhaps I’m expecting too much from my recovery or I’m being too impatient.

210

Hi Banoi, sorry to hear your symptoms are continuing. I had cyberknife about 2 year ago - I didnt have any increase in symptoms after treatment but the few I did have such as face twitching and poor balance did continue. I lost my hearing on the AN side very early (pre diagnosis) and as advised at the time I have had no improvement. I dont notice the twiching so much now so I think this has reduced and improved over a slightly longer time period - hopefully this will be the same with your symptoms.

Banoi

Thanks a million for the reply 210. It has been quite hard to deal with and a lot of people seem to think that because I’ve done the CK, the tumour is dead, I must be ok and I should be getting back to my former life. When I’m feeling drained and dizzy and unable/unwilling to do something, I start to doubt myself. It’s very frustrating.
The neurosurgeon was apparently surprised by my continued symptoms, which took me by surprise, as I know that continued symptoms are not uncommon. He said I should “keep active” which I certainly try my best to do. When I asked him what that actually meant, as in whether running, hiking, gardening etc was considered active, he declined to commit.

210

Hi all, sorry for short notice - I have just seen this today.

On saturday there is a Belfast Area Support Group Meeting for BANA Members and Acoustic Neuroma patients
Venue - The Sayers Room, Ground floor, ENT Department, Royal Victoria Hospital
Saturday 5th Oct 2019, 10.30am -12.30pm

the meeting will have a Speaker talk on;

“Therapeutic Treatment of Facial Nerve Palsy”
“Talking through the different stages of facial nerve recovery with different therapeutic strategies and treatment options also discussed”.

further details are available at the following link,

https://www.bana-uk.com/events/event-profile?id=109

echo_one

Hi all

Not sure if people are monitoring this thread. I had an MRI last June (18 months post op) and no apparent growth. Surgeon said not to return for another 2 years. But watch out for symptoms. No sure what to look out for. Lol. I get the odd and sometimes persistent headache. Mild enough behind the eye on the side of my surgery. Is that common for any of you. Sometimes worries me.

I thought yearly MRIs was the norm. Anyone else similar to me?

echo_one

Also I hope everyone is healthy and staying safe during the covid-19

210

Hi echo one, i thankfully havent had any issue with headaches. I am 3 years post cyberknife. I do get occasional small facial twitching below my eye and at the corner of my mouth (top lip) both on my AN side. Small issue really but yes can be unsettling at times. I am due mri and chat this year after 2 year from most recent.

210

sorry for delay in responding. Keep safe all.

echo_one

210 wrote: »

sorry for delay in responding. Keep safe all.

No delay really and thanks. Glad this is still going. Hope all stay well

Pkiernan

Hi all,

I've had an MRI after reporting timnitis and moderate to sever hearing loss in one ear only.

The MRI didnt show anything such as a neuroma and came back clear.

How were your neuromas diagnosed?
Did they show up on an MRI?

I'm concerned it may have been missed.

echo_one

Pkiernan wrote: »

Hi all,

I've had an MRI after reporting timnitis and moderate to sever hearing loss in one ear only.

The MRI didnt show anything such as a neuroma and came back clear.

How were your neuromas diagnosed?
Did they show up on an MRI?

I'm concerned it may have been missed.

Id be surprised it some like an AN would be missed on an MRI. did you consultant offer any other cause of your symptoms

So if the review of the results was no AN then I think you should be confident that didn’t miss anything AN related. Now the question is why you have those symptoms

Garlinge

I had CAT scan as well as MRI over the years to investigate one sided moderate deafness. In the end it was blocked eustacian tube so middle ear clogged. There was an immediate improvement following surgery to clear out but in time blockage returned. Surgery repeated successfully but again in trouble again 18mths later. Only then was I told I would be good candidate for hearing aid and that the level of deafness I had would not get worse. My deafness was sudden after airtravel.

Oggy83

Hello all. I found this forum a couple of weeks ago and have been reading through it on and off. Firstly I'd like to thank everyone who has chosen to share their stories relating to acoustic neuroma. I was diagnosed with an 8mm intercanalicular AN in October 2020, so it's small and entirely within the ear canal at present but still very worrying. It's been great to read about other people's experience of this condition in Ireland specifically, as most of the forums are inevitably from the US where things are somewhat different! Obviously it sucks to have one of these and I wish none of us did but it's good to feel that you're not on your own. I find that one of the hardest things about it and the sort of self pitying 'why me?' mindset that can take hold.

So briefly, as I said I was diagnosed with AN after having an MRI in October last year. I got tinnitus in my right ear for the first time in my life about a year previous to this. That night was very strange as I had pain on that side of the head and extending into the neck all night and barely slept. Fortunately that had never happened again since! Ever since I've had a feeling of fullness in the ear. My GP was only willing to put me on the waiting list for ENT which was 3/4 years! I went for a hearing test in March 2020 which showed perfect hearing so I kind of stopped worrying about it. Everyone seemed to think it was something sinus related. I persisted with the doctor and my last option was to pay for an MRI myself, which I did, bringing me to where I am now. I have another scan booked at Beaumont for April, then a consultation with neurosurgeons etc in May. It's obviously a worrying time as I've no idea what the follow up scan will reveal or what course of action will be recommended, or even what I want to happen to be honest. I was a real mess on getting the diagnosis, the symptoms suddenly felt very sinister as they reminded me of the cause. My GP prescribed betahistine, otherwise known as Serc, to help with the symptoms. Does anyone else have any experience of this? I got worried at one stage that it might cause the tumour to grow faster as it turns out the medication works by increasing blood flow to the inner ear and is meant for people with Meniere's disease.

Anyway symptoms are feeling of fullness in the ear, mild tinnitus when it's very quiet (have to have background noise to sleep), slight balance issues (feeling a bit unsteady sometimes), vision is a bit wobbly sometimes not like my eyesight has gotten worse but things just not as solid as they used to be if that makes any sense. I'm also a bit shaky which may not be related. They actually had to redo some of my MRI as they said I was shaking which I had no idea I was. Now I notice that I have tremors in my hands but that might be a manifestation of anxiety. I suppose you start thinking all sorts like what if it's nf2 (I'm 37 so that's unlikely I believe) or it's been mis-diagnosed and is something even worse.

I'd be interested to hear if any of these symptoms are in line with what others have experienced and what those who have already been through the mill think might be coming next for me.

All the best

Michael

echo_one

Hi Michael

Firstly welcome to this thread. I’ve no experience with Serc but I think you can rest assured that anxiety plays a huge part of all this and we manifest symptoms in many ways. Even the head mvoingi havr during bad anxiety. I’m not sure if people monitor this thread. I get emails so I see when someone adds to it. There’s a good network on Instagram too. If you send me a private message I’ll share my username there. Also the AN association is good on Instagram and I’ve found others people affected by it there too.

Coming to your prognosis. The mri result will determine surgery or cyber knife. I myself had surgery. Not an experience I’d wish on anyone but I can tell you. You get through it. Prepare yourself for positive changes in your life too. This tumour is the kick in the hole in many ways. We have one life. Live and love it. If you can get through this you can get through anything. You are now an AN warrior. So don’t waste your time with negative thoughts.
Regards
Paddy

looksee

Mod. Sorry to hear about your problem Oggy83, I hope you get some answers from Beaumont.

Can I remind posters that while you are welcome to discuss your own situation, we cannot give medical advice or offer diagnosis opinions on this thread or forum. Thank you.

Oggy83

Thanks for the heads up about Instagram. I don't use it but I'll check it out. I know what you mean about the anxiety, unfortunately that's something I've always suffered with and I know how damaging it is. I also get how this can all be turned into a positive too, in many ways I feel more alive now than I have done for a long time it's a definite case of highs and lows though.

Thanks for taking the time to reply to my post so quickly Paddy

echo_one

Hi all

I had an MRI, first one in two years and my tumour is recurring. He never fully took it all out to save some functions on my facial nerve. I’ve to go for cyberknife. Any information or things to be aware of would be great

Thanks

210_

Hi Echo one, sorry to hear you have to go back for more treatment. Have you had procedure completed yet ? I had no side effects in the days following the cyberknife. Very nervous at time and hard to keep still - if having again I probably would accept the option of something to settle nerves before treatment. The procedure requires mask to keep your head still which isnt too nice but very straight forward for me.