Acoustic Neuroma Hearing Loss

210

Having been recently diagnosed after single sided hear loss in my late thirties I was wondering if there was anyone else out there with experience of an acoustic neuroma ? Mine is quite small still at .5 * .8cm.

210

An acoustic neuroma is a benign tumor that develops on the nerve that connects the ear to the brain. The tumor usually grows slowly. As it grows, it presses against the hearing and balance nerves. At first, you may have no symptoms or mild symptoms. They can include

Loss of hearing on one side
Ringing in ears
Dizziness and balance problems

Acoustic neuroma can be difficult to diagnose, because the symptoms are similar to those of middle ear problems. Ear exams, hearing tests, and scans can show if you have it.

headtheball14

Hi 210, just diagnosed this week with a medium sized neuroma, trying to find the best treatment options for myself. How have you got on?

210

Hello mate and welcome to the AN club. I'm was only diagnosed myself about a year ago so my experience is pretty limited to date. I have been lucky in that my neuroma is small at about .8 cm. I have recently had my second mri 10 months after the first which diagnosed th problem. Fortunately the size has remained stable between the two scans meaning no further growth between . I find this a little bit strange as having started off and having taken my hearing on the left it seems funny to me that it would just stop growing. The doc says this stopping of growth happens in about 30 % of cases. I have to wait now another twelve months for a further mri to see how things go. If the size remains stable then we play watch and wait with an mri every year. If it grows then the likely course of action is the cyber knife laser in the Hermitage to see if this can stop the growth.

headtheball14

Thanks for getting back to me. At the moment I'm waiting for a consultation to get some feedback on what options I have. And everyone is on holidays at the moment.
You're lucky to pick it up so early it gives you a bit of time and options.
I didn't realise the hermitage had cyber knife, I thought I would have to travel to the UK for any treatment beyond surgical and a consultant here would need to sign it off first.
Thanks so much for getting back to me, I am in complete limbo here and besides some friends, I'm trying to keep it to myself till I see the consultant at least.

210

The first few weeks and months are pretty tough. I have also like you been very wary of letting people know because if you google search AN some of the stuff turning up is pretty challenging. The internet is great but a lot of the stories on youtube are a bit tough to watch and while its hard to look away I found other sites more helpful, you might have found them already but I will try to add shortcuts below . From my very limited dealings to date cyberknife would seem to be the prefered route here if the size of the neuroma is treatable by it. I assume there is a size where surgery becomes the more appropriate treament. The cyberknife is new here and I assume that it is where all AN patients will go if there neuroma size is appropriate to treatment by it. Once you get to meet with the consultant things become clear very quickly because the one consultant will be involved whether your treatment is waiting and monitoring, cyberknife or surgery .

210

Cyberknife ,

http://www.hermitageclinic.ie/services-specialities/clinical-departments/cyberknife/


British Accustic neuroma association

http://www.bana-uk.com


Acoustic neuroma association USA

https://www.anausa.org/

headtheball14

I hadn't even looked at you tube until you mentioned it. Now trying to avoid delving into the surgery videos and there are just a lot of Americans saying its a blessing or developing their relationship with god.Not feeling like that at the moment....

I had a heap of plans for ways to spend the rest of this year and it didn't involve having my head drilled into. To be honest I kind of panicked getting an MRI so not looking forward to being a patient.

I just hope I get to see a consultant soon, I'm convincing myself I have very symptom mentioned , I think from the size I'm most likely to have surgery but the cyber and gamma knife sound like great options if available. We will probably look back in 20 years at surgery as medieval.
Back now to finish my best bottle of wine , hopefully with it I'll climb out of my self pity.
Thanks again, I really do appreciate it.

210

Apologies, probably shouldnt have mentioned the old youtube - manys a sleepless night followed a bit of AN youtube surfing. Things might seem a bit bleak at the start but the clouds soon start to part a bit once you see the consultant & get a plan of action.

headtheball14

No, it's been helpful once I avoid the surgery videos, some of the progress videos are great.
At least you can follow the improvements. The forums are very good.
No appointment date with the neurologist yet

210

It took just under three months from my diagnosis in a regional hospital until the first appointment with the neurosurgeon in Beaumont. Hopefully the summer break doesnt change this too much for you.

I found the neurosurgeon tag at the bottom of my appointment letter pretty daunting. When I eventually got to the appointment though the focus seems where possible for surgery to be the last treatment option so while you mentioned medium size hopefully the range of other treatments such as monitoring or cyberknife remain in the mix.

210

http://www.dizziness-and-balance.com/disorders/tumors/acoustic_neuroma.htm

another interesting site.

headtheball14

Thanks 210, I had my meeting with the neurosurgeon a couple of weeks ago. That was about 2 weeks after my initial diagnosis.
They have recommended radio surgery treatment (cyberknife) .
I was delighted with that as I didn't think it was an option but back to waiting now, everyone seems to be on holidays again.
It's all a bit up and down I'd just love to have the next date

I found the following article which was really helpful, someone who had both surgery some years ago and cyberknife recently
independent.ie/lifestyle/health/living-on-a-knife-edge-how-robots-saved-my-life-30233323.html

Can I ask, my neurosurgeon said the radio surgery would be in Beaumont , is there a machine there or do you know if they refer to the Hermitage from there?

210

Thats great news,

From a quick search Beaumont seems to be part of the st Lukes network which I think has a linear accelerator which is like the cyberknife .

In the St. Luke's Network, stereotactic radiosurgery s mentioned as being delivered in the Rathgar centre using linear accelerators, (Not sure where the Rathgar centre is ?)

Also not very sure what the difference is between a Linear Accelerator and a Cyberknife - both look quite similar.

Have a look down through the following page about st Lukes,

http://stlukesnetwork.ie/treatments/treatment/radiotherapy.html

210

http://www.independent.ie/lifestyle/health/living-on-a-knife-edge-how-robots-saved-my-life-30233323.html

hadnt seen this before, very interesting.

210

Long-Term Outcomes after Radiosurgery for Acoustic Neuromas

http://www.nejm.org/doi/full/10.1056/NEJM199811123392003#t=articleBackground

210

Evening headtheball, how are things going with yourself ?

headtheball14

Not great unfortunately it's been decided that I need full surgery now. Back to waiting, ringing, leaving messages , hearing nothing back. It's very frustrating. A 1/10 chance of permanent facial damage and a long recovery. On the one hand I want a date and on the other it's the last thing I want to think about at the moment. Any progress on your side?

210

At many of my tests such as at the mri and other stuff the people in a lot of different places have picked up I assume from my the notes the name of the doctor who most likely will do your op. I take it they must see a lot of patients like us both before and after the different treatments. Many of them have taken the time just to mention they see who the doc is and they have made very positive comments about them. I take this to be a good sign because they didnt really have to make any comment & hopefully you have heard the same.

GeorgeHQs

Hi, just found this page and glad to find others in Ireland the same boat as me ( well not glad but you know what I mean).
Diagnosed with AN about 3 years ago following significant hearing loss in right ear.
After 1st couple of years of MRI etc, minimal/ zero growth in tumor so wait and see approach taken.

My most recent MRI however should a growth by about 3MM so advise now is GAMMA knife at Hermitage. (currently awaiting this, hoping it will be in next few weeks).

Difficult news really after not really having to think about it much after last couple of years.
However, advice is that GAMMA knife has 95% success rate and risks/ side effects seem minimal so coming to terms with it now and adapting to the new reality of it.

Will let you know the progress or give any relevant info I come across.

Best regards,

G

headtheball14

Hi George,
It is good to have people in the same boat. Ive had great help just knowing someone else is out there. Its difficult with this because its sounds so awful when talking to people with no experience of brain tumours , but i feel let off easy compared to people with other types of brain tumours.
The hermitage seems like a great option if you can avail of it ,i probably will have to have that after surgery at some stage so will be interested to hear how you get on.
Ive had a follow up MRI which at least says i don't have much growth since the last one a few months ago. And i got my next consultant appointment so guess it was a good enough thanksgiving for me.

GeorgeHQs

Thanks for post and totally agree having someone in similar situation to help make informed decisions about how to think about and deal with it. I know surgery is a bit daunting and happy to discuss each step in your "journey" if and when it has to happen. Hopefully all will go well and you will be able to leave it all behind you in next couple of years. I hope to try and get the Gamma knife tackled asap. It seems to take a year or so to see if it has been successful or not. Of course there's concerns but got to try and have a normal and happy life and not dwell to much! Onwards and upwards! G

ryanerer

Hi I had an acoustic neuroma removed 11 years ago..had slight facial damage after it for around 8 months.But it returned to normal after that.
I have recently undergone cyberknife treatment for another brain tumour.In the Hermitage.
Of the two options I would choose cyberknife anyday..
there is only one machine in Ireland and that is the hermitage.I had vhi thankfully so was after a lot of phoning and arguing with them finally got approved.as the cost is around 16k.or a long waiting list otherwise.Tumours have to be under 3.5 cm to be treated this way,so very important to act quickly if this is the route your are going to go.
If you have any questions you want to ask me in more detail,msg me..

Cheers

E

GeorgeHQs

Thank for reply R. I have received approval from VHI for Cyberknife about 1 month ago but still awaiting further update since. Am eager to get in done. In your case, were both tumours unrelated? In your situation do you continue to get regular MRI screening etc? Thanks for feedback, good to hear from people who can talk about it retrospectively.

ryanerer

Hi that is good you got approved,keep phoning the cyberknife team for updates on a date,dont sit and wait for them to contact you.
Who are you dealing with there?
I am due back in Feb for my mri after it.6 months after cyberknife,as before would not show any change bar maybe swollen,so 6 months gives a better picture...
My tumours are unrelated, unfortunately I have nf2 so develop tumours.
If you have any questions re cyberknife I will happily answer them if you want to chat on here or via phone?

Elaine

GeorgeHQs

Thanks Elaine, I have no contact there yet but will follow up tomorrow. Sad isn't you have to push to get things moving for something like this. You obviously been dealing with this for a long time with NF2. Thanks for advise and I may have more questions as they arise. Thanks again, and Happy Christmas. George

210

Evening George, evening Elaine. I think it was headtheball who mentioned it initially but there is a big benefit and some reassurance to knowing your not the only one in this boat . I found it very isolating at the start which I assume looking back is probably a natural enough reaction. Slowly but surely I am becoming more accustomed to the knowledge that my little dark passenger will be walking with me for some time.

Hope all goes well in the new year with your scan elaine. Did the radiation cause you any additional symptoms after the treatment ? I had heard about the swelling and wondered if this might cause trouble with balance ?

210

Interesting discussion from the MD Anderson cancer centre in US relating to Acoustic Neuroma, can be found on you tube at the location below.


https://www.youtube.com/watch?v=9rNu9Yryj1A

headtheball14

I hope everyone is keeping well and made it through christmas ok,I still haven't made a decision yet on treatment, still reading and changing my mind

headtheball14

just saw this article today, it might be of interest
I can't post proper links yet
theguardian.com/commentisfree/2015/jan/12/my-brain-tumour-acoustic-neuroma

GeorgeHQs

Hi all, I have my cyberknife treatment in the Hermitage this week.
Had a hearing test yesterday and hearing in effected ear has deteriorated again.
Advise was that it is "hardly functional". Seemingly (I only found out yesterday) that if Cyberknife is fractured into more than one session there is a better chance of preserving remaining hearing. Its difficult for a patient to make a call on this without a full clarification of any potential benefits of maintaining what's left in the remaining ear.

Anyway, looking forward to getting this step over and done with.

Can anyone advise any side effects from Cyberknike treatment they had following treatment?
Will it be necessary to take some time off work after the event?

Thanks & hope all it well.

George

headtheball14

I asked about that, they advised me that I may be a bit tired after the treatment and so I should probably be off work that week and possibly the following one, otherwise no immediate downtime and very person specific. However you should be prepared that you may have some after effects up to 2 years after the treatment, they usually present themselves at 6-8 months. I found a good blog myacoustic.org which seems quite detailed on what to expect . Best of luck with it

210

Evening George, my understanding from what I have read is much the same as above.

Hope all goes well, best of luck.

GeorgeHQs

Hi All, had my Cyberknife treatment last Wed. Procedure is straight forward. Felt a bit fuzzy for next couple of days. Some headaches also (like your brain feels swelled in the area of the AN). Had to stop the treatment for a few minutes as I fell asleep and jolted when I woke up ( which I hope hasn't fried some of my brain that doesn't need frying).
I must say though since then, back to normal really ( apart from some ringing in the ear when going to sleep). I know I might have bouts of side-effects at different stages but so far so good.

Depressing that it will take so long to find out if it has been effective or not. Seems to be a couple of years before it's effectiveness can be assessed and then if it has worked I suppose it need to be monitored continually to ensure it doesn't ever turn malignant ( even though chances seem to be very slim).

regards,

George

210

Evening George, glad to hear things went well. When you think about what has been done its pretty amazing to be back up on the go so quickly. Hopefully things continue to go smoothly.

GeorgeHQs

yep 210, couldn't agree more. I am greatful to be back to normal in the short term at least.
Hope all is well with you.

Regards,

210

So the annual NCT/MRI has been booked. It seems crazy how quick this comes back around again.

Hope all are well.

headtheball14

I'm scheduled for surgery in the next few weeks, hoping that this goes well. I think surgery is the right option for me but it's a hard thing to head into. It's difficult at work , Ive changed jobs because of this and I'm just not the old me anymore. Anyway fingers crossed it goes as well as possible. Good luck with the MRI.

wanny

Hi, all this is my first time to post , glad to find this site .It's good to hear other peoples experience with acoustic neuromas .I was diagnosed in 2013 after right sided deafness there was no growth until last November , had another scan two weeks ago and it has grown again 3mm so I'm at 19mm now and they have recommended cyberknife just waiting on appointment from Beaumont ,not looking forward to this as they said I will lose all hearing in my right ear and there is a risk of facial paralysis .

looksee

Wanny, good luck and hope all goes well for you.

wanny

Good luck to you all hope things work out

210

Evening Head the ball, glad to hear you dont have much longer to wait. Hopefully all goes to plan and the bounce back after goes smoothly

I think I get what you say about the old you. I view my little mate in my head as a dark passenger with me always. It has the ability to pretty much suck the joy out of anything in a heartbeat just by remembering that its there. Hopefully once the AN is either gone or on he backfoot after treatment the shadow it casts will be a bit less consuming. Life then I assume will go back to normal only cropping up once year for the annual nct & mri. (hope this makes sense)


welcome on board wanny.

GeorgeHQs

Hi all, Best of luck with surgery Headtheball. Obviously its daunting but hopefully all goes well and you can return to some normality in a few months. As much as it takes over your life at the time (and as much as the annual MRI's drag you back in, 210) its surprising how life does get back to relative normality (with a little adjustment).

Welcome to the tread wanny, my own situation is quite similar to yours. Had Cyberknife at The Hermitage in Jan on a similar size tumour. Doing quite well but hearing on the right has worsened and have quite bad tinnitus (which you only really notice when its very quiet, e.g. going to bed. Overall though, could be a lot worse. Main impact of my one sided deafness is that am less inclined to go to the pub etc. However, the important thing in your life remain fully intact, so stay positive.

Jo1234

Hi all on this post. It's great to read other people's experiences with an acoustic neuroma. I was diagnosed with mine last month. Completed shocked when I heard. I noticed my hearing was not right but hearing test came back fine. Consultant even shocked to find a large tumour. I'm kinda in shock since. Was wondering did ye find it difficult to get seeing a neurologist. I'm frustrated as hell since I found out, that I really have to chase secretaries to get anywhere. Have ye similar stories. Any advice

210

Evening Jo, It can be very isolating at first so hopefully knowing there are loads of others around in the same boat is helpful. My experience was that it took a few months to get the first appointment to see the neurosurgeon. This time waiting is pretty frustrating. From the time of your post I'm guessing you are doing a bit of late night research. Everyone will be different but If I could go back the big bit of advice for myself would be no internet research at night, for me it led to a lot of sleepless nights which doesnt help. The size of your AN will have a big bearing on you treatment & hopefully the size will keep gammaknife or cyberkife treatments open as an option for you. Once you get the first consultation with the neurosurgeon things will get clearer.

Jo1234

Thks 210. Got appointment date sorted at last. Hopefully I'll know more then. The pestering worked. Thk u for ur advice. It helps to hear from others who have gone through the same thing.

headtheball14

Hi jo,
The one thing I learned was that nothing will happen of you don't make it happen. Yes you will have to ring and push for appointments because unfortunately despite the kindness I found in the health system there is no organisation , it is all just seat of pants rather than an efficient service. Research your own options and decide on the treatment you want. I've had multiple opinions and still not sure whether I made the right decision. I also had options going private and doing a lot of background work.
I'm just recovering from surgery at the moment, not feeling great at the moment but relieved that something has happened at last.
Feel free to pm me,
Headtheball

210

Evening Headtheball, glad to hear you have the op over. I'm guessing not feeling great is a bit of an underestimate and hopefully now its all upwards on the recovery from here.

GeorgeHQs

Hope your doing well with your recovery headtheball and things begin to improve. Regards, G

Jo1234

Hi everyone hope everyone is doing good. How u feeling headtheball. Hope you are recovering well. I went with the cyberknife option. My neurologist advised me to try it. Try save what's left of the hearing currently going through the treatment. Treatment itself not scary at all besides being terrified the first day going in. Doesn't hurt at all but feeling very sickly from it. Was this similar for others I'm wondering??

GeorgeHQs

HI Jo1234,

I had Cyberknife Jan 15. Yep, felt very groggy for 4-5 days but then fine. I'm six months on now. My hearing in the AN ear has definately deteriorated during this time and have significant tinnitus in the same ear ( read somewhere that tinnitus linked with deteriorating hearing but not exactly sure). Other than that, life as normal really. I have noticed some twitching in my AN side eye in recent weeks. I am suspicious that this is a side effect but can't really tell yet. (You are inclined to consider anything unusual as a side-effect but that may just be paranoia). 6 -12 month period is considered period where side-effects kick in because of initial tumor growth post treatment. I notice from your mail you said "1st day going in". Is your treatment staggered into more than one session? If so, I think this might help preserve hearing. Anyway, best of luck and onwards and upwards. Regards, G