I was diagnoised an Acustic Neroma last year after suffering hearing lose in my right ear. I have been having regular MRIs to check the growth my last one has shown that it has grown 2mm. I have been given two options either to go for the gamma Knife surgery which is a targeted Radiotherpy or to go for surgery to remove it. they feel that surgery would be the best options because if the radiotherpy can cause swelling which can cause me Trigeminal neuralgia which can be very painful and hard to handle then it would be more risky to do tThank youhe operation. I am asking if anyone has been in this situation and what be the best choice. if any body has undergone the operation how was the recovery and any long lasting side affects apart from permanent hearing loss in the right ear. Thank you
Mariapia66: I was diagnoised an Acustic... - Acoustic Neuroma ...
Mariapia66
Hi sorry to hear there ur options. I had surgery back in march 2010. I had no choice. It had to be operation. It was the size of a golf ball. If I had not surgery I'd have been dead within 6 months they told me, 2 years later it started to grow again this time had to have radiotherapy it hasn't grown, Unfortunately I ended up with all the side effects dizzy spells tinnitus facial palsy on the right side with the deafness in the right ear balance issues, but like anything in life just had to live with them and adapt my life around them unfortunately. Had no help when I lefted Hospital with balance issues and being able to walk properly, funny enough Last year they offered me physiotherapy for my balance issues which is a bit late considered, It's 14 years later, hopefully it won't be like that for you and fingers crossed you have a quicker recovery than I did. Good luck and speedy recovery. Garry
Hi Garry,
It’s such a tricky thing, first the diagnosis and then having to decide between treatments. I had exactly the same dilemma, on my fast growing squatter, when it grew from 12mm to 25mm in a year, despite being slow growing the previous year. Initially I wanted it out, but the more I spoke to others, including the 2 consultants ( one the surgeon, one the radiosurgery neuro,) I decided to opt for radiosurgery, although mine was delivered at Guys using Linac machine in 3 sessions, not one, using Gamma. The treatment was painless and recover fine, whilst I had a few flare ups from swelling, nothing that couldn’t be helped with steroids and a very low dose of amitriptyline at night for the nerve pain. I if you can’t decide, the brainstrust offers coaching for this, or you can talk to a peer supporter who has been exactly where you are. In the meantime, focus on all the ways you can to south and relax yourself, ask about the impact of both treatments and know you are not alone. X Lin
Does amytriptiline help sleep and with the ear ringing? So confusing because one article says it does and one says it does not. Surgery confusing too as my guy says only watch too many issues with surgery hate the ringing!!!!
Hi Kelly, amitriptyline helps hugely with sleep, taken at about 8pm, just 10mg and I’m easily sleeping 8 hours… unheard of for me! As for the tinnitus, I thought I’d never adapt and cope with it, but somehow it’s become much easier to live with. I had hypnotherapy and have regular reset sessions with the brainstrust. Treatment won’t make the tinnitus go away, wearing hearing aids helps in the daytime a lot, and really just doing things that help distract and attend to yourself, whatever helps you find joy. This is a long old journey, with or without intervention ( the ‘do no harm’ approach of watch and wait IS the best one if it’s not growing) but it feels the opposite when you’re first diagnosed. I’d say try amitriptyline to help you sleep if you are really struggling, and know that you will adapt. I pretend mine is cicadas and I’m on holiday! X
Thank-you for replying . How was the operation and the facial palsy is it for good or a short while.
Had a few problems after me Op was put into Educed coma coz a bite my tongue nearly off 4 2wks whiched helped my tongue heal, but the nightmares I had were horrific, 14years on and the fatigue tiredness facial palsy balance dizzy spells neuro pain and vertigo still the same from day one, on 75 to 50 mg of amitriptyline daily depending on the pain plus using CBD Gummies and THC Gummies to Help me, the positive is I'm still here being able to see my daughter grow up to a young adult and living her life so I'd go through hell again to b there for her again and my wife. All anyone can say is to Stay Positive and Think Positive things, wouldn't like anyone to go through what I did.
Garry
Hi, I was in the same situation as yourself about a year ago. Was diagnosed in 2022 following a regular health check during which asymmetry in my hearing was detected. Subsequently regular monitoring and having an MRI every 6-12 months. The latest MRI in June 2024 showed some growth and my AN was measuring 19 x 11 mm. Hence I was given the option of radiosurgery (Gammaknife) or removal using craniatomy (surgery). I opted for the first and can say that the side effects were quite minimal for me. Although it has not dealt with my orginal symptoms (deafness in right ear, balance issues and tinnitus) it did not make them worse. This is also what I was expecting since the radiosurgery is meant to stop future growth and longer term shrink the tumor. However consultant told me that even patients with shrinking tumors will still suffer from deafness, balance issues and tinnitus. The treatment itself is also a breeze and nothing to be afraid of. In my case I had one radiation session of 45 minutes after which I was able to go home. I had my first follow up end of last year with another MRI scan and consultant was carefully optimistic about the effect of the treatment. In my case there was no swelling and tumor was the same size as pretreatment. However there were black spots on the post treatment images which indicate necrosis and tumor cells dying (which is what they observe when treatment is working). I cannot comment about the cranianatomy surgery but it would have been a lot more invasive with much longer recovery time and higher risks. Since my tumor was still of the size that it could be treated with radiotherapy I opted for that since any more growth would have ruled that option out. This is just my experience. Hoping it could help you make the right choice.
Hello, I was suffering with right-sided deafness which I thought was a blocked ear until further investigation showed a small (12mm) growth. Eventually my consultant recommended gamma knife treatment, saying it was far preferable to surgery with far fewer side effects and no issues with recovery.
This was carried out in 2019 at the QE in Birmingham. By keeping very still (I was lying flat on my back with a premade wax mask over my head so they could correctly target the tumor) the 45 minute treatment only took 30 minutes and I could go home straight away (it didn't hurt at all). I was already having balance, dizziness and tinnitus issues, which I had been told were irreversible as the nerves involved (there are seven in each ear and the growth damages them as it grows and they are not repairable) were already damaged. I was able to return to work without further issue, although I started to use a walking stick to help with the balance issues and learnt to be careful when turning round when moving.
Due to Covid I did not get any follow-up MRIs until 2022, by which time any expected swelling of the tumor had receded. I was offered a hearing aid to transmit the sound from my right ear to my left, but I have found this unhelpful (I just use my right-sided deafness as a useful excuse when I don't want to hear!) I also had some instruction on how to improve my balance by focusing on a point while moving my head from side to side, and this has helped. I do have 'mild' tinnitus but I cope with that most of the time without treatment. There has been some facial palsy - sometimes it feels like I have had a dental injection and I wonder if I am dribbling! However, having some other unconnected health issues, my neuroma does not give me any uncopewithable issues.
My last MRI (October 2024) has shown no regrowth and I am currently on a 'watch and wait' scenario - something I am happy to do.
I am being treated ay the national hospital for Neurology in London. I have had various MRI on my last mri there has been a slight growth of 2mm it's already 2cm big they have advised me to go for surgery as it seems to continue to grow. and have it taken out.
I decided that I had to trust my consultant (a very learned man) and have not regretted that. These are difficult decisions to make but if you have similar confidence in your consultant, and have discussed fully the benefits and drawbacks with him, I would hope surgery is the right route for you - good luck!
Thank you it's one of the best hospitals in the uk I feel confident about them. I have my next appointment on the 26th March.
Thank you.
Ask them about fractionated radio-surgery using a cyber-knife machine or perhaps another type of Linac. That minimises swelling and other treatment side effects. I had such treatment (using a standard Linac) some 27 years ago in addition to killing off my 25mm AN, it also stopped the dreadful Trigeminal Neuralgia I already had very quickly
Such great comments I can't really add much. I will keep it short and draw from my own experiences. Essentially I cut to the chase.
I know it doesn't seem or feel like it but you are in a really good position, it is very hard to know what route to go down. It boils down to evasive versus non invasive or do nothing at all.
Factor in work, family & friends. They are your support network. (It impacts them as it does you. )
For me and with the benefit of hindsight I would have most probably started off with some sort of radiotherapy.
Gather ALL the data & information as much as possible.
Keep on getting regular scans. Period.
You are your own doctor.
My Profile Pic is my actual Scan back in December 2009 😭🤣 my Humour sort of went really dark 🤣 after seeing that, had a 5 second cry then just snapped out of it and went fuck it and a New me was Born one that can Joke about really uncomfortable things and more Basically 🤣.Garry
HelloWould like to know how often you do mri mine was operated in sep 2015it was 3.5cm had last scan in Dec 2021 now I am again scared and have anxeity, migraine and also clutrophobic so can't do mri Dr told me to forget it as per last scan
Hi I was being Scanned every year for 11 years then had 2 every 2 years and now my last one is in August 27 then they will discharge me which am not happy about, but the Positive is it's not growing so if down the line my own insanity starts I'll go back Docs to refer me for Scan, as there aware abot of my mental health issues are because of this, but who knows in 2027 I could me ready to put it behind and move forward hopefully it will be this way, as I really really over think everything which is not healthy at all, what therapies have you tried for your Clutrophobic that's if U don't mind me asking.Garry
Thanks for reply, I am also overthinker everyone says stop thinking yes for me scan dosent show any growth so they ask me not to do mri but if I am concern I should do mri and have peace of mind but I am 37 now so being so much emotional having health anxeity couple of mths so far adjusting without medicine just by meditation and exercise.... But back of mind I am always thinking negative of my health hope all goes well... Atleast I can relate due to this thing we are mentally little weak
We're just a little Broken 🤣 but being Positive can help us a lot, easier said than done thou but we have to only way we survive, me now 46 feel 82 thou 🤣🤣, I find it I laugh Daily and stilly things and my self it helps 🤣🤣
True... When I don't thing about operation or tumor I don't feel pain the moment I start thinking I will have all the symptoms... Though I am 37 feels more than 50😂well I feel it's natural feeling after some trauma you feel that.... Lots of prayers for everyone
I was diagnosed in August 2019 and they told me to wait six months to see if it was still growing. It was at just under a centimeter and when they did a MRI in 2020 and because of Covid, it went seven months instead of six months they told me it was now surgery. During the seven months I met the surgeon for radiotherapy and I met with the surgeon for removal. When they did the MRI April 2020 they said I no longer had a choice for radiotherapy since it was pushing on the brainstem. It hadn’t grown much but it had changed. So I had the surgery in May 2020, the surgery was 11 1/2 hours long however, I only spent one night in ICU and one another room in the hospital. I was doing really good with no dizziness just a slight balance issue and of course it started with losing my hearing in my right ear so that hearing was now totally gone. The issues since surgery have only been a metallic taste for about two years that has seemed to have gone away now with the hearing loss the tinnitus is more noticeable I think but overall I’m back to doing what I did before the surgery except a little less stable, so I stay off ladders. If you have other questions about my experience, just let me know.
I had Gamma Knife radiation at UVA back in 2015. The beauty of getting the Gamma Knife was minimal down time, back at work a few days later., and the fact that you could not do anything further for 3 years.
The downside was a lot of follow-up MRIs and possibility of tumor growing back. My tumor did grow back, so 3 years later I flew to San Diego and had surgery at UCSD with the dream team of Dr. Marc Schwartz and Dr. Rick Friedman (Acoustic Neuroma specialists).
Other than a period of time when I was in an awful work situation that messed with my balance I have been doing well and have follow-up MRIs every few years since they did have to leave a small piece since it was so close to my facial nerve. Also thankful they took a little piece of fat from my belly instead of my butt to fill up the space in my head - I might be a fat head but I could have been a butt head, LOL, ha!
Wish you the best of luck!
It's a very personal choice. In my case I already had the trigeminal neuralgia (and it is most unpleasant). I chose radiosurgery for my 25mm AN as I couldn't see the point of taking the risks associated with micro-surgery when there was a minimally invasive alternative with a very short recovery time, especially as the success rates were the same. Make sure that you consult a radio surgeon before deciding as naturally, both Doctors will think their method is best for you and each may not be up to date with the latest techniques and result from the other method. It's 27 years since I had my fractionated radio surgery and all is still going well.
I had surgery 20 years ago. Gamma knife was in its infancy compared with nowadays. My surgeon didn’t give me the option. He said this was due to the size of my AN, 35mm in diameter, my relatively young age, 54 then, and also that my symptoms were increasing in severity. The operation lasted 6 hours and I was told I might lose movement on that side of my face. My left ear drum was ‘sacrificed’, fat was taken from my abdomen to fill the cavity in my head. Immediately post operation I was extremely nauseous, I had no saliva in left side of mouth and a dry left eye which was more than uncomfortable, it was agony but gels worked to address the symptoms. I have continuous tinnitus and the left side of my head, eye lid mouth tingle. I have learnt to live with and largely ignore these side effects. I have had one follow up MRI two years ago when perceived the post operative symptoms were worsening. I am happy that it was the right choice in my circumstances. If it happened to me now heading towards 75 I don’t think I would undergo the operation but living with the tumour , for me then, was not an option I could contemplate. It was a relief to know it was gone and that the after effects were ones that have a minimal impact on my quality of life. I hope this helps you.
Thank you most helpful
why did I not go sooner 
Waiting for results of MRI, Google has taught me so much compassion...
Not sure how to go forward now!
Not yet diagnosed....AN
