Acoustic Neuroma Hearing Loss

headtheball14 · 13-01-2015 5:11pm

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

13-01-2015 11:48pm

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

Hope all goes well, best of luck.

GeorgeHQs · 21-01-2015 1:42pm

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

22-01-2015 9:39pm

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 · 27-01-2015 3:54pm

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,

24-05-2015 10:29pm

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

Hope all are well.

headtheball14 · 27-05-2015 9:06am

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 · 27-05-2015 7:21pm

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 · 27-05-2015 7:32pm

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

wanny · 27-05-2015 7:32pm

Good luck to you all hope things work out

27-05-2015 11:23pm

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 · 28-05-2015 5:47pm

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 · 11-06-2015 2:03am

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

11-06-2015 8:47pm

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 · 13-06-2015 5:28pm

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 · 27-06-2015 11:42am

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

27-06-2015 7:38pm

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 · 09-07-2015 8:43pm

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

Jo1234 · 11-07-2015 12:14pm

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 · 11-07-2015 5:34pm

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

Jo1234 · 11-07-2015 6:23pm

GeorgeHQs wrote: »

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

Thks George for reply. Yep they r giving it to me over five sessions to try preserve the remaining hearing. Good to hear about other people experiences and know what to expect. Roll on end of treatment soðŸ‘ðŸ‘

Jo1234 · 11-07-2015 7:49pm

GeorgeHQs wrote: »

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

Thks George for reply. Yep they r giving it to me over five sessions to try preserve the remaining hearing. Good to hear about other people experiences and know what to expect. Roll on end of treatment soðŸ‘ðŸ‘

Poula · 22-07-2015 1:20pm

Hi All

I was diagnosed with a medium sized An in 1997 at the age of 27. I nearly passed out with fright. Had the surgery that November. I remember it being a long hard road to recovery.. I had Dizziness... a feeling the everything was a bit surreal... if that makes sense.. Balance problems when Tired. I had facial weakness and a dry eye and a pounding headache almost constantly for 9 months. But in Time things improved. The facial weakness got much better and the headaches abated.
Roll on 2008 and after my routine MRI scan I was told I had regrowth. I was in blind panic at the thoughts of more surgery. However I was referred to Sheffield Hospital in the UK for Gamma Knife Surgery. Much easier and much less convalescence. I was back on my feet and feeling good after a few hrs. As of my last MRI all is looking good. The Tumor has shrunk. I still have mild facial weakness but not too bad. Balance is not too bad but I wouldn't chance riding a bike.. and I'm almost completely deaf in my bad ear now. All in all though I'm in good shape. Any help or advice I can offer to anybody please don't hesitate to contact me.

Shay.

GeorgeHQs · 24-07-2015 1:54pm

Thanks for that Shay, you've certainly been through the mill with AN but great that positive outcome after your battle with it. Thanks for offer of advice. I'm 6 months post Cyberknife, so fingers crossed will see positives in coming year. Regards, George

ryanerer · 28-07-2015 2:51pm

Hi George.sorry I am only getting back to you now.my two tumours were different types.i have nf2 so develop brain tumours.i feel good now after the cypher knife and the rumour has shrunk slightly so far.how are you?

GeorgeHQs · 29-07-2015 2:05pm

Hi Ryanerer, glad your feeling well.

I'm 6 months post Cyberknife. Had my scan & meeting earlier this week. They said that MRI looked positive, no growth so that's good.

However in the last month I have been having these short bouts of facial paralysis on the AN side, effecting right eye and cheek for approx. 1/2 minute. I suppose a couple of times a day on average. This is causing me concern. I contacted the hospital before my meeting so I could discuss it with them. Their response was that they had no explanation for this and that they have not come across this kind of thing before.That was that. Hardly reassuring. I have been researching this myself and from a few different sources it seems about 2 % of post CK AN suffers experience similar side-effects and it seems to kick in about the same time frame. I suppose I will just have to give it a little more time to wait and see, but feel a little disappointed that the consultant has kind of glossed over it.

Anyone else had any any similar side effects? Look I know there is an element of individual experience involved with AN and that some side-effects are to be expected, but not really happy to leave it too long and just hope it goes away. On the positive side it has stopped me from worrying about the hearing loss and tinnitus.

Good look with your recovery, George

headtheball14 · 09-08-2015 2:02am

HI all, George, interested to hear how you are getting on, any change with the facial nerve since. I'm pretty good now. Besides the tiredness / laziness I have limited side effects . I had lost my hearing and have slight facial paralysis but balance is back to how it was prior to surgery and luckily I've no headaches etc. pretty pleased with outcome so far I think. I started driving again in the last few days and I'm even threatening to try to cycle again soon.
It's hard to face into but it's such a relief to have it over with. Just my check ups and scans to get through now

GeorgeHQs · 13-08-2015 7:59pm

Delighted your on the up headtheball. Keeping the spirits up is vital in this game!
I'm doing fine really. I've think I've come terms with the the hearing loss and tinnitus and the fact that I'm going to have these other side effects for the next while. Dwelling on them is of no benefit. Still a little annoyed with the hospital's " well we can't explain that" response when my facial symptoms which are quite obviously connected with either the AN or the treatment. I've found the Acoustic neuroma US forum really good where some participants have had almost exactly the same side effects over the same time scale, which is kind of comforting.
Look overall realising that on the whole I've little to complain about. I'm trying to take a scientific approach, logging when I have these little side-effects and their triggers. Keeping fit and eating healthy so as to give myself no excuses further down the road. The statistics say that in a couple of year everything should be settled. Onwards and upwards!

GeorgeHQs · 23-03-2016 10:00am

Hi all, its been a long times since there has been any updates on this site so I thought I'd touch base and see how everyone is getting on. I'm feeling quite good really, facial issues have gone, but alas hearing on AN ear is the same. Bad tinnitus in the AN ear, but overall life generally back to normal which is great. MY 1.5 year MRI approaches in June which will let a lot in term of my Cyberknife treatment, so it brings it back to the forefront of my mind again. I've recently been talking to another AN patient who is experiencing some of the same side-effects as I had and I remember the comfort from discussing the issues with other AN sufferers and having a forum for advise.

Anyway, hope you all are well, regards, G

26-04-2016 7:52pm

Evening all, evening george. I had my most recent (third) MRI back in July of 2015. Thankfully this showed no change in the size of my AN from the first mri which must have been just a little less than two years previously. Because my hearing in the AN ear went very quickly & pretty much completely at the start of this journey there was no urgency for treatment. While the loss of hearing in the AN ear is a daily frustration it brought the early diagnosis which all considered is a positive. I had a bit of facial twitching a few months ago which was a bit strange & located itself only on a small section of my eyebrow and on a small point on my chin on different days. Thankfully this only occured a few times and I assume that as the twitches were on the same side as the AN they are connected. All in all things are positive and myself and my little passenger rub along for now without much disturbance.

hope all are well.

Acoustic Neuroma Hearing Loss

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