Good day to you all. I am a 58 year old soon to be 59 (in two months' time) and was diagnosed with a 3mm AN in 2013 and advised to watch and wait. Had vestibular rehabilitation therapy to help with vertigo, balance and dizziness in the initial stages and again in 2018/2019. Neuroma stopped growing in 2019/2020 but with annual scan in 2021 it had grown quickly to about 15mm. My hearing in the affected ear is deteriorating, my balance is not great and I get a heavy head when I do too much but have learnt how to live with and manage these symptoms.
I have now been offered SRS in Oxford on 12 July and have had all the prep done - mask and all. As the weeks and days are ticking by, I am a bit anxious about treatment but particularly possible side effects. Welcome any thoughts and how it might have been for you. Thanks.
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zeekay
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Hello! It’s so hard to manage the worry, I know! I have recently had steriotatic radiotherapy,for a 2.5cm AN, administered in three sessions totalling 19.5 Gray. This was given on 16th,17th and 20thJune. I had strong dose of dexamethadone on day of treatment and for 7 days. A week on from coming off the steroids, I am still absolutely fine. During treatment we stayed up at a hotel in London and it felt like a really great mini break with an hour at the hospital each day. I had some slight nausea yesterday which went when I ate. I would say drink lots of water, take paracetamol before each session to help with any tension headache and if the mask is uncomfortable, the treatment doesn’t hurt/feel anything at all. I’ve been gentle with myself and rested and swam in the sea and had nice wine and food and generally treated myself as if I’m in a bit of shock, physically all my symptoms such as tinnitus and deafness are the same. Remember to breathe, and know it really really really has been a walk in the park this far. I’m mindful that later there could be some swelling which may need steroids to calm. But so far so good. The trickiest thing was a few nights of not sleeping at all due to the 7 days on dexamethadone but I just watched Netflix and read and knew it was temporary!! Oh, and I ate way too much! All the very best to you, let me know how you get on. 💐 Lin ( if you want to find me on face book I can even send you a video of the linac machine at Guys used to deliver treatment ) Lin Henson
Hi Lin thanks for your response. Oh I see your AN had to be treated in 3 sessions. I am having one session - suspect because mine is smaller. But really good to learn about your approach to dealing with it all. Really helpful. I tend to do a lot of walking. Hope your recovery continues as well as it can be. Take care.
How are you doing now? I think you’re about 10 months on from diagnosis? Any follow up scans yet? Really hoping you’re finding your way though the maze of information and managing to nurture yourself a bit. If we can work how to deal with stress and worry, I think the rest of it becomes a lot easier!
Kind of you to ask. I was diagnosed with a 1.6 AN July 2021. 2nd scan in Jan 2022 shows growth. 3rd scan due this September. Hearing loss and tinnitus has worsened considerably. A feeling of disassociation and light head has crept in now. AN seems to be a complicated condition!I still get the feeling the Team I am under at the hospital prefer to avoid intervention and hope everything just slows down.
I have joined BANA and recently attended a webinar on surgical process and the physiological recovery..really informative.
Just hoping the upcoming scan shows stability rather than growth again. Either way Having a positive attitude like yours can only help.
Lots of help and information from BANA, and also the brains trust, I’ve been having wonderful weekly hypnotherapy relaxation sessions with them, and a monthly support group especially for people with ANs, all free and very very good! I do hope your next scan shows no growth, but if it does and you and the team feel it’s time for treatment, you’ll still be very much within the parameters for the less ( non) invasive radiosurgery. There are other options, as I’m sure you’ve read now, to surgery. I was given the choice as mine had grown to 2.5 and surgery or three sessions of therapy was offered. I’m a month in from treatment and other than needing a nap in the afternoon and residual tension causing headaches ( I’m trying acupuncture tomorrow and some sessions with my physio to help the neck and shoulder strain) it’s way easier than I thought it would be. The stress of watch and wait can’t be underestimated and the brains trust offer free one to one support with that and making decisions about treatment too. Highly recommended. All the very best for Sept, let us know how you get on. Lin
I'll certainly check out the Brains Trust now so thanks for the heads up there. You are right with regard to the feeling of uncertainty around watch and wait..I have tried researching what if anything may slow growth..aspirin of all things came up positively in a recent Harvard trial but my Consultant hasn't heard of it..so was fairly dismissive! I have practised yoga for decades and I think it has really helped both mentally and physically. I would advise giving it a go to anyone diagnosed with AN. Hope the acupuncture goes well for you. Wishing you all the best 👍
Thank you so much for responding. Thankfully I was ok with the mask though they were not able to insert canular to inject the dye. The neurosurgeon assured me it was ok as they had done a dye contrast with the MRI two days before. indeed my appt came through really quickly. Should have been done back in March but I was out of the country for about 3 months. As soon as I got back and contacted them it all went through so quickly. Good luck with your treatment on Tuesday and hope it all goes well. Zee
Hi ZeekayI was on watch and wait for about 5 years and then suddenly my Acoustic Neuroma started to grow quickly and I had Stereotactic Radiosurgery in December 2020 also at JR Hospital Oxford
I was very anxious with the Mask fitting and also the treatment. The Stereotactic Radiosurgery was fine . I had steroids for a week afterwards to help with any swelling and I felt ok, just a bit tired.
I went back to work after a couple of weeks as I felt no different to how I felt before the treatment
I did have some brain zaps when trying to sleep and I still get them at times now when I am overtired and trying to sleep
My hearing in that ear has deteriorated a bit more since and I have constant tinnitus. My balance was not so good before treatment and not much different afterwards but I had vestibular rehabilitation therapy recently and now it’s so much better than it was
I am now awaiting results from my recent MRI that I had 3 weeks ago
HiThe vestibular rehabilitation was at the physiotherapy at my local hospital
I had to ask for it as it wasn’t offered to me
It involves balance exercises like going up and down stairs, standing on one leg eyes open then same eyes closed , balancing on a soft surface like standing on a cushion on one leg etc , walking up and down turning your head left and right and a few other exercises . I can’t remember all of them
Steroids were fine as only a week of taking them so didn’t put on weight
Had some strange aches and pains for a week or so afterwards though but then wore off
Hi Luna1956 - thanks for your response. Glad to hear that you were able to return to work soon afterwards. Indeed - regarding hearing and balance, I have been made aware there is no guarantee if this will change. I am prepared for that and have managed my situation for 9 years so will continue to adapt and manage. Just thankful for the intervention at this stage. Hope MRI does not show any swelling. What are the brain zaps? Can you please explain how this manifests itself. Thanks and take care.
Hi ZeekayI seemed to experience the brain zaps after I had my treatment it’s when I was going to sleep and it’s an interruption like a zap sound that jolted me awake each time I was dozing off
Happens at times still when I’m over tired but was really bad after I had the stereotactic Radiosurgery
Maybe was so bad then because I could not sleep well when I was on the steroids
Ah, sounds like something I experience when I had really bad episodes of vertigo in 2018/2019. For a good month or so, each time I was falling asleep I will get like a jolt that will wake me up and my head was really messed up then. Not sure how else to explain it. Very uncomfortable. I started leaving my bedside light on as I wondered whether it had something to do with the dark. It eventually stopped as my severe vertigo symptoms calmed down. I hope it eventually stops for you.
Hi Zeekay. I am 87. I had steriotactic radiotherapy seven years ago for a 2,5cm. AN in three sessions each separated by one day. From my experience I would say there is no reason to be anxious about the procedure itself nor the side-effects which in my case were only a very mild headache and nothing more. The result of the radiotherapy appears to be, as predicted, no improvement in hearing (almost completely deaf in one ear), no improvement in balance or the "thick" head, but at least none of these problems has got worse and can be lived with. Best of luck.
Hi, I am 71 on 12/7/22. My AN, grew to 20x10mm. I had the SRS in March this year. My symptoms are about the same, hearing loss in right ear, fatigue, balance issues, I have an appointment with the doctor in Sept, then a scan next year. Each month I seem to feel a little better. Don’t worry about the procedure, NHS are great. Good luck. Mike
Morning, well had my treatment last week It was fine mask wasn’t a problem this time I was quite relaxed I could have fallen saluting tell you the truth ha ha
As the week has gone on I’ve started getting pretty bad headaches and feeling sick and really tired
I’m going back to work today as had holiday booked last week. Dunno if I will last the day but will try x
Ah thanks for the update. Hope you were able to manage best you can your return to work yesterday. Had mine today at about 5:30. Just feeling tired and in bed. I wait to see what's in store for the next few days. Wishing you all the best and hope any side effects get better soon. Take care. Zee
Hi Zee, hope you are able to rest and be gentle with yourself following treatment. I’m a few weeks in now and definitely have benefited from treating this time like a holiday! Get strange heavy feeling headache if I’ve not eaten or am tired, if I have a 30 min nap around 3pm feel much better! If I don’t, by 5pm I need an hour. It’s all possible to manage just about without the extra rest but so much easier with. Keep very well hydrated and eat regularly and rest… that’s my prescription 😎
Hi, thanks for checking in. 36 hours in and the lack of sleep is unbelievable only manage 5 hours to date. But going to try and catch some now. Completely missed that side effect of the Dexamethasone with all the reading I did. Otherwise I feel ok. Thanks for the tips and I wish you all the best in managing symptoms/side effects going forward. Just thankful I had my referral at this stage. Hope you have a good day.
Hi Kim sorry to hear this but I think this is possible as the weeks progress. I don't know as I only got my treatment just over a day ago on 12/07. I think others who have had their treatments before me will best placed to respond. I use paracetamol as my go to for headaches and when I get a heavy head. However we should always be mindful that this thing, treatment and side effects affects us differently. If only you can have some time of work to find a way to manage at this stage that might help. Good luck. Zee
Hi kim, I started to get headaches a few weeks in and migraine flashes for the first time, Think maybe the heat and the stress ( although I thought I wasn’t!) but today woke up no headache, woohoo. Drink loads of fluids of course and know it will soon pass x
Thanks for checking in. I am relatively good. Beginning to overcome lack of sleep. Just beginning to experience serious fatigue and piercing headaches. But I'm sure this too will pass. Just really thankful I don't have to go outdoors and battle with the heat. Hope you are also getting to a better place.
Just wanted to say I had proper acupuncture for the first time last week, and felt like a different person afterwards and ongoing… headaches gone! Just feel lighter all round and will go back for more! Hope you’re doing okay. Lin
Hi Lin - good to hear from you. Great news about the acupuncture. I may try it. I have been relatively ok and doing more as the days go by. Just having dizziness and headaches. Gosh I had almost forgotten what it can be like with the dizziness but I treat as if it was before treatment. Lie down when I need to. I don't feel confident to leave the house yet without hubby but but can't wait to start my walks again. Thanks for the mention of the BANA - I re-registered with them again after many years. Was hoping to join the Oxford virtual support group last Saturday but I don't think they picked up my email request for the zoom link - never mind. Will get in there next time. Hope you have a good day. ☀️🌞
The brain trust do a brilliant online support group once a month for those with AN and a weekly hypnotherapy relaxation session ( I tend to fall asleep!) Highly recommended. Hope you are soon feeling up to getting out and about, xx
I’m managing the headaches by drinking lots and lots of water and eating little and often (when I eat the headaches seem to go!) and closing my eyes for a bit in the afternoon. Mainly feeling good. Hope you’ll soon feel yourself again.
Hi ZeekayIt’s interesting reading everyone’s journey of diagnosis, treatment and recovery regards their AN. I still get the heavy head and some balance issues when I’m really tired.
This is my story….
I was diagnosed with Tinnitus in July 2018, age 53. I had an MRI in March 2019 and was diagnosed with a 6mm. It grew to 11mm by October 2019. I was due MRI in March 2020 but Covid19 put a stop to that. I had MRI in July 2020 - AN was 2.5cm.
Due to accelerated growth, I was given 6 doses of Steriotactic Radiotherapy over 2-weeks in December 2020. I took my mind off the treatment by thinking I was lying on a beach, sun shining, reading and drinking a cocktail. The more I relaxed, the easier it was to deal with the experience.
It was a 100 mile round trip for each dose. I was given anti sickness tablets as the nausea and sickness was awful.
I spent a few weeks in silence as I was hearing double. Experienced head bangs and head zaps and stabbing nerve pain that was debilitating. I suffered memory loss and anxiety. I had amazing support from my GP who I spoke to regularly.
I received Vestibular rehab. As I’m a hillwalker, my Physiotherapist recommended purchasing Nordic Walking Poles rather than using my usual walking poles. They were the best investment, gave me confidence and my balance got considerably better doing the exercises.
My recovery took longer though. I went back to work in July 2021 but after living in peace and quiet for 7 months, I couldn’t cope with the noise and busy environment so I resigned from the NHS after nearly 30years. By January 2022 I was feeling much better. I use ear plugs to reduce the noise and can now go back to concerts as I love music. I got a new job in March 2022 and I love it!
I still experience the odd stabbing pain but I can live with it.
I look positively on my diagnosis, which was life changing and not life threatening and I’m making the most of every day counting my blessings.
I hope you’re treatment and recovery go well. Take whatever time you need to get back to100%. Best wishes to you and let us know how you’re doing.
Hi Margaret has been and absolute pleasure reading your story. Very positive approach amidst all the challenges. And indeed all the more reason why even though I worry sometimes, I am always also thankful for my situation and the lessons and opportunities it presents as you never know what the next person's situation is.
I am also thankful for opportunities - the opportunity to share with others, the opportunity for access to resources, the opportunity to adapt to my situation - a lot of which I have done gradually over the years and now live a very calm peaceful existence. I am taking it slow, recovering from treatment and it's side effects and knowing it will pass.
I hope you continue to enjoy the things you love and your new job. Thank you so so much for sharing.
Hey Lyn, thanks for checking in. I am good. How about you. I keep thinking of you having had 3 sessions and what it must be like for you. My Dizziness has been a lot better in the last few days but the fatigue is what I'm struggling with. Not used to napping during the day. Trying to fight but I have to nap in the end usually much later in the day. Otherwise ok. Had a trip to the seaside on Saturday which was lovely. I hope you are lot lot better. Best Zee
Ah, don’t fight the nap! I was the same, if I didn’t have a nap at 2, by 3pm I was all over the place. But last week and weekend haven’t needed to do that most days…. The more you listen to your body right now, the better it’ll heal and life will feel more normal again I think! I’ve been seeing an acupuncturist for the last few weeks and it’s been amazing how much more energy I have for the days after each session… and the headaches/weird head feeling has practically gone. Hoping that’s it and I won’t get the 3 to 6 month swelling that can happen and it has worked in terms of stopping growth eventually. Glad you’re doing okay. I’m lucky enough to live by the sea Ava have been swimming/ floating around every day.. it’s such a tonic. X
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