Acoustic Neuroma Hearing Loss

GeorgeHQs · 07-06-2016 8:31pm

Hi 210, thanks for reply. I've also very little hearing, or useful hearing in the AN ear. Annoying, but not the end of the world either. Have you ever consider or looked at hearing / devices for the effected ear? I always said I wait until the growth of the AN issues was fully resolved before considering this. Keep debating to myself weather its worth it or not. Anyway, have my one and half year MRI coming up post Cyberknife so hoping to draw some conclusions with that. All the best, G

missy_cork · 11-06-2016 12:33pm

Hi Guys

im new on this forum, glad i found this. My husband has been diagnosed 3 years ago but until this week we have been advised to wait and watch. this week we have received results from last MRI and since AN has grew from to nearly 20x10 we were told it needs to be treated. hospital said they will arrange visit with neurosurgeon within couple of weeks but i feel like we have wasted too much time already and would like to seek other consultations.
my question is where to go, whom to see? any recommendation? we have been told it wil be prob treated with radiotherapy but no details as of which type. id like to seek opinions on all treatments including surgery. Any help is highly appreciated.

GeorgeHQs · 12-06-2016 4:54pm

Hi Missy, My own experience with AN is similar to your husbands. When diagnosed mine was 8mm x 6mm I received a wait and see for 2 years. Then almost out of the blue it was twice as big and was advised to get radiotherapy. I had the option of getting it in Beaumont hospital or in the Hermitage (Cyberknife). The advice generally seems to be to avoid surgery ( there always general risks with invasive surgery and the recovery time is a lot longer). However it is case specific, i.e does your husband still have good hearing in the AN ear. Staged/ staggered Cyberknife is better for preserving hearing i.e. cyberknife given over 4-5 sessions.

Im only 1.5 years post Cyberknife and so i dont know yet if it has been successful ( I'm awaiting results of a recent MRI which should give me some indication of the success or not). It takes about 2-2.5 years to really know if its stopped the growth of your tumour. I therefore can't really advise fully on its worth or not yet.I think though it has about 90- 95 % success rate. Cyberknife is a very easy option in many ways. The procedure takes about 45 minutes and you head home and are fine within a couple of days. After 6 months I started getting facial spasms on my AN side which where I'm sure related to the treatment but I was unhappy with the support I got from the hospital to be honest. Anyway, luckily these side-effects dissipated after a couple of months. I have bad tinnitus in my AN ear from the Cyberknife and i think this is very common and is permanent. My hearing on the AN side has deteriorated significantly post Cyberknife ( think my well have happened anyway).Other then that its hasn't impacted on my life at all.

To summarise, your husbands exact AN conditions will impact on the type of treatment he gets. Cyberknife hasn't been plain sailing for me, but if it works , which I hope it does, overall I would feel its a good option. The only positive of getting surgery is that after the long and risky recovery period, the AN is definitely gone ( although so is your your hearing on the AN side). Radiosurgery kills the tumour but doesn't remove it.

In terms of where you go to get advice, in my case there was a team in Beaumont and one in the hermitage but the are essentially the same consultants / neurosurgeons ( just public v private). Let me know if I can help any further, regards, George

missy_cork · 13-06-2016 10:17am

Thank you George for your reply it's good to know there is someone who knows what we are going through. If you don't mind me asking how you feel after CK? Do you have any side effects? My husband hearing is poor in AN ear. To be honest we totally don't know what procedure to choose I suppose we need to get opinions on all of them. The question is when you had your meeting in Beamount was it with one doctor specializing in radiotherapy or with team who does radio and surgery? How long did it took to get appointment? Did you arrange yourself? Doctor at hospital said they will arrange but it will take couple of weeks. Last time they said couple of weeks it took 6

Thanks again for your help

GeorgeHQs · 20-06-2016 8:12pm

Hi Missy,

Firstly, after CK i felt fine really. For the first to days I felt like my brain was working at low capacity i.e I felt like it was about 2/3 the normal efficiency. After that totally fine other than the bad tinnitus which takes a bit of getting used to. As mentioned above I had six month side effects which were really scary but don't seem to be that common. So overall, if it works, an easy enough option I would have thought over surgery.

I initially met with an neurosurgeon at Beaumont who works and consults with a team of different specialists in the ENT department.
I cant recall how long it took but not that long. After a few years following wait and see approach, they advised Radiotherapy as treatment but the decision is ultimately yours. They didn't really seem to think surgery made sense with a small or medium size AN.

Hope this helps, regards, George

GeorgeHQs · 18-08-2016 12:05pm

Hi Missy, any update on your husband's situation? Has he got meet with a consultant yet?
Regards,

G

01-10-2016 10:30pm

Evening George, I was wondering if you have had any more trouble with the facial spasms . I think about six months ago now i had a few twitches to my face on my AN side. The twitches would turn up for an hour or two at a time with gaps of maby a few weeks between. One was a pulsating dimple on my chin and another was a slight pulsating twitch on my eyebrow again on my AN side. I havent had any further twitches recently but i get an occasional sense now every month or two of maby a slight stiffness to my lower cheek /chin again on my AN side . Minor stuff really, next MRI is due next year which will tell the tale.

GeorgeHQs · 03-10-2016 10:13pm

HI 210, no facial spasm issue only lasted for a couple of months and I haven't had them for over a year now. At that time I also had similar issues as you've mentioned above, i.e. twitching and stiffness on the cheek on the AN side. I do feel that my symptoms were related to my cyberknife treatment ( irritation of the trigeminal nerve) but obviously not sure. From looking at the AN US forum others seem to have similar side effects post radiation. Other than my hearing loss on the AN side, I've had very little issues since about a year ago which is great. Strangely enough my eye was twitching one day a couple of weeks ago for most of the day.No sign after that. I think having a AN makes you more tuned into things like that that otherwise you would pass over and that maybe happen anyway. However if you're concerned about it you should ask your consultant or request an MRI sooner for peace of mind. Best to luck, G

echo_one · 18-09-2017 12:10pm

Hi all,

Hope that this thread is still active. I've been avoiding material on the net as much as possible. But here has been comforting.

I've my first neurosurgeon appointment on Monday. After 3 years of tinnitus and hearing loss and eventual slight numbness in my face an MRI has shown I've AN on the left side. I've not asked how big it is but my ENT said to focus on it being benign and not too urgent. I should've asked but I've a lot of anxiety as it is so I didn't want to know straight off.

My gp met me and gave me some darker details but I figure I'll wait for all the real info form the neurosurgeon.

Can I ask how everyone is doing?

20-09-2017 11:05pm

Evening Echo_one, welcome on board. The first appointment with the neurosurgeon is one to get you a bit nervous all right. These things change very slowly so you have time on your hands - there isnt any rush which is a blessing but also bit of a pain as you just want to get on and get sorted. The big thing to focus on is that these are benign. I think my story started back at the end of 2013 when I had one sided hearing loss.I went to the ENT who did an mri and refered e on to neurosureon. At my first neursurgeon visit at the start of 2014 he just recommended I went away and had a repeat mri after 6 months as my an was small. There was nochange after the 6 months so the next mri was sheduled for two years further as I followed the wait and see approach. Unfortuately the next mri at the start of this year showed a bit of development in size and density so it was decided to zap the an with radiosurgery. I was also getting a few twitches and little bit of tingling and numbness which I suppose suggested the an was developing a bit. I have been very lucky in that I have had very little side effects from the radiosurgery - no pain and only very slight twitching and very very very occasional slight tngling and numbness on my an side in the few months since. The radiosurgery is a good option if your an is small ( mine was less than 2 cm). Once you see the neurosurgeon things will be a lot clearer and hopefully radiosurgery will remain an option for you if needed.

Best of luck on monday.

echo_one · 20-09-2017 11:12pm

Many thanks for your reply 210

I really appreciate it. Reading this thread calmed me a lot over the last few days.

Happy to hear that your treatment was the radiosurgery. I'm kinda hoping the same but what will be will be

echo_one · 27-09-2017 9:33am

I seen my neurosurgeon on Monday and I've to have surgery to remove the AN. He gave me the proper name but can't remember it.

The AN is 3.4cm x 2.5cm so quite large and scary to finally see it on a screen.

He said he'd remove without harming the nerves to my face but if there's a possibility he'd remove what he can and attack the rest with cyberknife at a later stage.

Likely my surgery will be November but I'm just wondering should I be asking more about the cyberknife for this. Is that an option I should've asked him about. I'm guessing since it's large that it's not an option and doing that at an initial option means more waiting to check if it worked, at a later stage

27-09-2017 11:21pm

Evening Echo one, sorry to hear that surgery is being recommended. The size I think seems to be what determines if you are best to go with radiation or with the surgery . The surgery takes a bit more to get over than the radiation which is why its seen as not the prefered option . I assume surgery woudnt be offered if radiation was still an option for you. I think if you look back through previous posts Headtheball also had surgery and hopefully they might drop back in with a bit of advice on how thing have been going since.

echo_one · 28-09-2017 6:10am

Hey 210. Yes I think so and I hope he does too.
Not much else I can do but accept this and try move on. I'll try stay positive and hope the recovery is ok

Thanks again

Poula · 28-09-2017 12:11pm

Hi Echo one.

Sorry to hear the news that you have to have surgery. I myself had an AN removed surgically in 1997 that was similar in size to your own. I was 25 at the time. As 210 has said the surgery will take a bit longer to get over than radiation but with time and the help and support of friends and family you'll be fine I was and you will be too. If there is any help advice I can give you please don't hesitate to ask. Pm me if you like. I wish you all the best and please let us know hew things are going for you.

echo_one · 28-09-2017 5:07pm

Poula wrote: »

Hi Echo one.

Sorry to hear the news that you have to have surgery. I myself had an AN removed surgically in 1997 that was similar in size to your own. I was 25 at the time. As 210 has said the surgery will take a bit longer to get over than radiation but with time and the help and support of friends and family you'll be fine I was and you will be too. If there is any help advice I can give you please don't hesitate to ask. Pm me if you like. I wish you all the best and please let us know hew things are going for you.

Hi poula

Thanks very much for the post. Their entire thread has been considerable comfort. I'll definitely be back to give updates and don't be surprised if a PM comes in

Thank you

Poula · 28-09-2017 5:19pm

echo_one wrote: »

Hi poula

Thanks very much for the post. Their entire thread has been considerable comfort. I'll definitely be back to give updates and don't be surprised if a PM comes in

Thank you

Absolutely no problem at all.

:)

echo_one · 07-12-2017 10:07am

I’m over my surgery 3 weeks. ToUgh 24 hours after it. Then the drugs must’ve had me feeling ok for a week. Done on a Tuesday, out on the Friday.

After coming off the steroids I had tough week but got through it with other pain killers.

My left side of my face is paralysed but told it’s temporary. I hope it is as progress seems very slow. Biggest irritation was to my eye as the kid wouldn’t close proplerly for a good few days. But feeling it’s on the mend now.

One other strange affect. I was under for 7 hours and I must’ve been lying on my arm badly on my right side so my ulnar nerve was damaged and my little finger and one beside it on the right hand has loads of pain and pins and needles. Hoping that resolves itself over time too. It’s frustrating

Come Xmas I hope to be a lot better.

Poula · 11-12-2017 8:11am

Hi.

Great to hear you're surgery is over you. That's the worst of it done and dusted TG. Its a bit of a battle for the first few weeks to get back on you're feet and back to normal. After my surgery the whole right side of my face was paralysed and my eyelid didn't close at all. But it did resolve itself for the most part after a month or two. I was given physio to do on my face witch did help. I also had very bad headaches and terrible problems with my balance. But again these resolved themselves with time. Over the years my hearing is all but gone in my AN ear now which does present some challenges.. some of them funny.
The trick is to remain positive and don't push yourself too hard in the beginning. The scary bit is over you now. All the best and have a Happy Christmas.

headtheball14 · 17-12-2017 10:05pm

Hi echo one, yes had the surgery ,just had my follow up mri last month 2 and a half years on and all looks great, had bad facial paralysis about a week after surgery but it eased , a year later still a little bit but think it's all gone now.
It took over three months to go back to work and a bit longer to get back to normal but I'm glad I had the surgery, it's just a bad memory now and allowed me to make plans again for the future, good luck and go easy on yourself

echo_one · 18-12-2017 8:29am

thanks all. This forum has kept me from the scarier stories and given me more support and info than any where else

echo_one · 06-02-2018 5:59pm

Hello again everyone. Just a little check in. I had my surgery in mid November and paralysis on the left side of my face hasn’t really hinted at recovering. Neurosurgeon said could be months or year. I fear a year will pass and he’ll say it’s years or never at all. The only hint of movement is that my nostril on the left side flares but minutely and no noticeable to others. I just examine closely. My eye ball rolls when my eye lid tries to close and I can assist the eye lids to close at night though I wear a patch and put gel in the eye for lubrication. Can anyone tell me if their paralysis experiences. I go to the Physio every 6 weeks in Beaumont. She said not to waste money on independent ones and he only sees me every 6 weeks as she knows it’s a long road and if she saw me more I’d be upset with the lack of progress.

For any of you. When it does return. Is it gradual or dramatic? Did you go to independent physios or even try acupuncture. I see mine again tomorrow so I’ll ask of electrical stimulation should be considered

Thanks

headtheball14 · 25-02-2018 1:04am

Sorry for delay replying. Mine was bad for first month or two. Wore a patch for a few weeks.it was actually fine straight after surgery , then I tried an acupuncture session a week after surgery and it collapsed. I know a few people I met were quite shocked and by the time I went back to work after 3 months it was improving but still noticeable. Within a year I could notice it but very few others did.
The actor mark ruffalo spoke of his experience after surgery. I think it was paralysed for a year before recovering.
The Physio in Beaumont advised against electric treatment, said it potentially could develop a facial tic. Hope things improve for you.

headtheball14 · 25-02-2018 1:07am

I think recovery was gradual with me although the collapse happened overnight. Bloody acupuncture!

echo_one · 25-02-2018 3:09am

Thanks for the reply and info. The Physio in Beaumont confirmed all that you said. It’s a waiting game and could be a long one. She told me not to waste my money on anything else. When the nerve decides to move things, it will and in its own time.

Banoi · 26-05-2018 11:27pm

Hi guys, just found this board and was very happy to read I was not alone. I was diagnosed with a small AN last year in June after symptoms of hearing loss and imbalance. Then it was 8x5 mm. An MRI in Nov showed at 13x6mm. The consultants recommended watch and wait. I’m due for another MRI soon. Tinnitus has been getting worse and imbalance is not improving, although they said it should stabilise over time. I’m learning to live with it, but I have to admit it’s not great, and it ends up affecting my mood too. Am I alone?

echo_one · 27-05-2018 7:43am

Banoi wrote: »

Hi guys, just found this board and was very happy to read I was not alone. I was diagnosed with a small AN last year in June after symptoms of hearing loss and imbalance. Then it was 8x5 mm. An MRI in Nov showed at 13x6mm. The consultants recommended watch and wait. I’m due for another MRI soon. Tinnitus has been getting worse and imbalance is not improving, although they said it should stabilise over time. I’m learning to live with it, but I have to admit it’s not great, and it ends up affecting my mood too. Am I alone?

Well banoi. I didn’t have much balance issues really. All mine was tinnitus and facial pins and needles until I had the surgery. The balance issues I had was slight and mostly apparent when I was in the gym. Generally I was ok. Maybe mine was more gradual so my body compensated at that time too. I’m sure there could be exercises to try help in some way. The tinnitus I never got away from. Even have after surgery, not as bad though now.
Hope others can reply to you here

Rusko · 13-06-2018 8:12pm

Hi Banoi<
I have AN diagnosed just last week after cca 12 months trouble size of tumor 1.3 x 1.5 cm waiting for appointment somewhere ,but I just wrote to special European clinic in Barcelona and Slovakia, and Czech republic, from all of them I got answer that I need take action now, don't give a chance tumor to grow between my nerves and do worst,
my hearing is effected already, and my eyesight getting worst too, so don't really know...
While I am waiting for appointment here in Ireland I am going for consultation to Barcelona or Slovakia clinic, consultation will cost about 500 eur include necessary check up to get clear recommendation what to do next.
Just I am little scary after reading result cyber knife procedure, I know that above mentioned clinic using cyberknife as well but up to specific tumor size only...
keep up to date …..
and Good luck !

Rosschick · 19-02-2019 10:07pm

Hi.
I had cyberknife treatment for an AN exactly 12 months ago. To say the side effects have been horrible is an understatement!!! When I met with the Consultant radiologist he told me to expect a little numbness around the area for a few days after but there should be little or no other side effects. After the treatment I was perfect for the first 6 weeks (was back at work straight away). Since then I have had terrible twitching around my right eye, a pain in the back of my head and over the last few weeks I feel like I am getting some of the original symptoms that I first presented on. I have a terrible pain in the outer part of my ear which is real intense and my ear feels blocked. I have sent a few message to my neuro consultant and he says they are all side effects. If I had known this I think I would have opted to have brain surgery!!!

Banoi · 21-02-2019 5:56pm

Thanks echo_one and Rusko for the replies. My experience continued last year with continuous imbalance, tinnitus and worsening hearing. Some days were worse than others. The follow up MRI in Nov showed that my AN was now 2.2x1.3 cm. A hearing test showed my hearing had deteriorated. Consultants advised Cyberknife treatment which I agreed to and underwent a few weeks ago.

The procedure itself was professionally conducted, a little uncomfortable, but no drama. For 2 hours afterwards I felt fine and then the wheels fell off. A massive headache forced me into bed and then crushing fatigue. The dizziness and unsteadiness became worse and nausea set in. This lasted for just over a week. Then the headache faded and I woke up feeling like I had blood instead of lead in my veins.

Now I feel like I'm making slow progress daily. I'm better than the day after the procedure but not better than before the procedure. I'm hoping the trend will continue upwards. It's still early days and with time and rehab, I feel confident. At the very least I feel sure it's not going to get worse. I have to go back in 6 months for a follow up MRI. Hopefully Gizmo has had his ass kicked!

Acoustic Neuroma Hearing Loss

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