Acoustic Neuroma Hearing Loss

Jo1234

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

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

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

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

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

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

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

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

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

210

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.

GeorgeHQs

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

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

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

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

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

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

G

210

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

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

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?

210

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

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

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

210

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

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

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

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

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

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

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

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

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

echo_one

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

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

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

echo_one

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

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

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

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

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

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!

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.