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
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.
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.
Waiting for results of MRI, Google has taught me so much compassion...
Not sure how to go forward now!
Not yet diagnosed....AN
Supporting a friend who's just been diagnosed...
