Hello, my fellow AN warriors! I've been told by the team at Kings that I may not be a candidate for radiotherapy due to the position of my tumor on the brain stem. It's 15mm at it's largest. My only symtoms are (crazy persistent) tinnitus, some hearing loss, numb ear and a new very occasional twitchy face/lip. I'm about to have another MRI with contrast to see how quickly/slowly it's grown since Sept 20. My question is if you've had radiotherapy and didn't have bad symptoms before, did you become more unwell several months after? Anyone else had it pushing on brain stem without bad side effects until given radiotherapy, anyone stayed on w and w for several years with a similar size AN until they had to have surgery, as radiotherapy ruled out? Sorry... Lots of questions!!
Who has had radiotherapy without terr... - Acoustic Neuroma ...
Who has had radiotherapy without terrible balance effects etc on tumor 15mm pressing on brain stem or similar
Hi Flappers 👋 in response to your question I had radiotherapy in Sept 2017 which sadly hasn't worked but I didnt feel worse after treatment. My hearing has deteriorated and although I had a hearing aid I didnt find this to be beneficial. My balance is more noticeable especially in the dark. I dont have any numbness or tingling. My AN at the last scan in Oct 2020 measured 26x14x11 and my consultant has said they arent worried about the 26mm but the 14mm is now just starting to indent the middle cerebellar peduncle (his words not mine!) so Gavin (I decided to name it) will have to be surgically removed. Another scan is booked for June 2021 and as I have another health issue which they would like resolved before this happens but have forecast this for late this year early next. Let me know how you get on xx
Thanks so much for taking the time to reply. I'm so sorry radiotherapy didn't help, but helpful to know it didn't hinder your balance too much, despite where Gavin is hanging out. Hopefully you'll really feel the benefit when they take him out later this year maybe. It's all the lack of certainty which does my head in! We're all in the same position there really. X
Like you its the lack of certainty but one thing I am thankful for which also helps to keep things positive is the fact its benign. The not knowing from year to year is hard though. The positive about the balance issue is that when they take Gavin out they also take the nerve of balance out. As balance issues are part of the recovery process hopefully mine won't be too bad. Take care xx
Hi Debra, wondered how you are doing and if you had surgery? Lin
Hello LinThank you so much for your message. I am good thankyou. Had my MRI on 7 March and will get the results on 22nd of this month. Staying positive that there is no growth again this year. How are you? Xx
Hi Debra, how did results go? Mine had grown 7mm between scans so time for treatment, and although they had said a year or so ago I wouldn’t be able to have radiotherapy, due to position have now decided it is fine and I will have this at Guys in London in the next few months. I was really shocked it had grown but now processed it ( a session with the brain trust charity helped) and feeling hopeful that treatment won’t be too gruesome! Fitting in as much fun as possible in the meantime! Lin x
Oh Lin I am sorry to hear that. Its an awful shock isn't it. We are warriors and you can get through this! I had radiotherapy four and a half years ago and had 30 sessions over 6 weeks. I managed to work half days throughout and my husband and daughter took turns in driving the 200mile round trip to Addenbrookes. Although mine didn't shrink when expected the news I received on the 22nd April was the best. It has shrunk for the second year running. It was 26x13x11 and is now 24x11x8. I firmly believe this is down to various changes I have made in eating habits and trying not to get too excited about things. Please do let me know when you are scheduled for treatment. Keep strong you can do this xxxx
Hi Debra, so good to know yours has shrunk… tell me more about change to eating habits… and any handy tips on chilling with radiation. Mine will be delivered by linac machine at Guys in three shots. I’ll let you know how I get on! So glad yours is now shrinking, have symptoms got any better compared to before treatment? X Lin
Sorry for the delay in replying Lin. Hope you are keeping well and positive. Can we message privately on this platform? Wanted to tell you about my dietary changes xx
Hi Debra
Sorry to jump in on post.I’ve been diagnosed with an AN and awaiting appointment with specialist at St George’s.I was wondering if you could tell me about the dietary changes that you made please?😊
Hi Flappers..I had Stereotactic radiosurgey on my AN on February 7th 2021.
It wasn't near my brain stem but touching my cochlear (one of the hearing bones)
I appreciate its still very early days but I haven't had any New side effects but I still have the original tinnitus and poor hearing on the left.
I've basically got to wait a year before I'll know if this treatment has worked or not.
Stay strong "sister".
Shouie x
Thanks Shouie. I truely hope this treatment works well for you 🤞🏻. Please let me know how you get on over the coming year. Staying strong is what we do! Lin x
Hi Shouie,
I have similar AN as you close to my Cochlea. Had Stereostatic radiosurgery last June 2021.
My hearing has got worse since with constant tinnitus, however it is more bearable than the pulsatile tinnitus I was getting. I had a follow up MRI in Oct which showed AN had not grown any further and was looking less dense. I was told by my oncologist that the radiosurgery might have caused damage to the cochlea as the AN was so close. Will need AN monitored ongoing however oncologist believes that the surgery has worked and AN will continue to die over the next 5 years. Good luck to all in similar circumstances.
Hi Flappers, my neurosurgeon also gave me similar info about my AN when I was diagnosed in Nov’20. My AN is 22x12 and is indenting my brain stem. I did a lot of research on ANs and decided, due to my mild symptoms, some deafness and much tinnitus, to w and w for 6 months. My neurosurgeon and MDT agreed with my request, so my next MRI is Apr’21. In the meantime I paid for a private consultation with a highly regarded AN specialist in a hospital that specialises in this kind of problem and was told that I would definitely be a candidate for Gamma Knife radiotherapy. I’m now delving into the different types of radiotherapy, being Gamma Knife, Cyberknife and TrueBeam. I have not quite come to a final conclusion about which would be best for me yet. For me, surgery is a last resort, but saying that, it appears from the great amount of research I have done, that the vast majority of surgery is quite successful. I pray to God every day to shrink my AN, and actually think that my symptoms are improving a bit, my hearing is improving a little. Hopefully next April I will get some good news and can make my next decision. I know it’s very hard at times living with an AN, but they are benign and it could be a whole lot worse, the chances are that whatever route you end up taking, you will be ok at the end of it.
Thank you so much for taking the time to reply. I would be really interested in knowing who the specialist team you consulted with privately? ( I'm under Kings and wouldn't imagine there could be a more specialist knowledgeable team out there, I'm mainly curious as to knowing if people have had radiotherapy that worked but without the dreadful side effects months on from treatment.) I know surgery is only a very last resort, when life needs preserving, So if radiotherapy really isn't an option I can or want to take I'll be on w and w until either it stops growing or has to be taken out. I'd love to hear from you when you make a decision and which radiotherapy you opt for. Good luck!
After talking to two specialists in ANs, one in the UK and one in Germany, I’ve come to the conclusion that Cyberknife or Gammaknife are both fairly equal in getting good results for radiotherapy treatment. It seems that Truebeam is not quite as accurate as CK or GK. but what is also important is who gives the treatment. It would be worth you looking at the European Cyberknife Centre in Munich for good information on AN treatment.
Hi Desoto, wondered how you got on and if you had gamma or cyber knife treatment? I’m due to have linac radiosurgery at Guys in June, 3 fractions. Seems that they’ve charges their mind about me not being able to have it! Mine is now 2.2 .
Hi Flappers, I’m still on w and w after my third mri last October which shows my AN as stable. Like you, my plan is to leave alone until I have to do something, and then I would choose Gammaknife. The published success rate is better than 95%, so extremely good odds. Also the now 3 top neurosurgeons I’ve consulted with all tell me the chances of after effects are small and generally, if any were to occur are not long lasting. Hearing loss in the affected ear may happen, but with ANs hearing is usually already a problem anyway. From my research over the past 18 months it seems like any side effects should be reduced with multiple treatment (as typically done in the USA) as opposed to one session, although all three of the neurosurgeons I spoke to recommended only the single treatment, so I think your being looked after well by your team. The treatment itself sound like a doddle. I’m sure you will be absolutely fine and soon will be able to put the whole experience behind you once and for all, and get on with life without having the AN in the back of your mind.All the best for your treatment, let us know how you get on.
Is this a radio surgical team? If not you MUST get a second opinion from a radio surgical team. At the end of the day Radio surgeons know about radiosurgery and micro surgeons know about micro-surgery. Good luck
Thanks bypass! The team that reviewed my scan is made up with all the specific individuals that offer the different treatments. It was the neuro oncologist that raised that, but it will be reviewed at next scan. I will ask who makes up the team but as it's the specialist team at Kings college hospital in London, alongside the skull based surgeon at Guys, I guess they have the specialist knowledge. But your comment has definitely ensured I'll check when I have my next consultation. Thank you. Have you had this treatment and what was the outcome?
Hi, I had radiotherapy in 2015 as I was told mine was getting close to the brainstem. I didn't have many symptoms before apart from Tinnitus. Now I have had Tinitus. And my hearing has gradually got worse on that side. Lately I have been getting bad headache s frequently. So yesterday I have emailed the consultant secretary to see if the headaches could be related. I'm not sure of the headaches could be because I wear a mask all day at work.
Take care
Also I forgot to mention, mine was watched for years but it got to the stage where they had to do something. So after very carefully looking into surgery & radiotherapy, radiotherapy carried less risks. I didn't have many symptoms after apart from Tinitus and hearing loss. And the consultants are happy with me now as it's shrunk .
Before you have the radiotherapy, a whole multi disciplinary team meet to work out the best care for you.
Hope this helps
Thanks so much. It does help. I have only read about people having terrible balance issues after radiotherapy so good to know this didn't happen to you! I do hope you can get some relief from the headaches. I too was struggling with headaches and had some physio on neck and shoulders and acupuncture by the physio on my head at same time and it sorted me out!
I understand your preocupation. At the beginning of 2018, I was diagnosed with a brain stem tumor. During that year he was under observation and the symptoms were hearing loss in the right ear and some imbalance. At the end of that year 2018, the tumor began to grow and in January 2019 I was treated with radiotherapy and concomitant oral chemotherapy. Two years have passed, I am still alive, the treatment left me sequelae, but I understand that if they did not give me the treatment the tumor would have continued to grow. I suggest that you do not look for certainties, except the certainty of feeling that you are in the best hands and trusting the medical team that has made the diagnosis and defined the treatment.
Good luck and strength!
Thank you so much. You're so right about not looking for certainties... I'm just thinking about possibilities at the moment. And the same luck and strength to you. We've got this!
Hi I had a 18x 12 mm which was pressing on my brain stem it was a long thin finger shaped with a bent top, the top was the bit was the bit that was touching the brain stem. I had Gamma Knife in 2013 at Sheffield, my neurosurgeon wanted me to be operated on but I wanted Gamma knife because I had a better chance of preserving my hearing ( I already had hearing loss apart from what was being caused by the tumour) he wasn’t happy about it due to other health problems I had and asked a few specialists what they thought, they all said they didn’t recommend radio surgery but if I did have it to have 28 doses! I thought no way was I going for 28 doses so I insisted on a referral to Sheffield who looked at my scans and said no problem they could go one dose and to ignore my other health problems it wouldn’t make any difference. So cutting a long story short I had gamma knife I did have worsening symptoms for about 2 years and still have slight balance problems if I move my head quickly or change direction too quickly, my hearing did get worse but has settled back to slightly better than it was. I do recommend going to see the consultants at Sheffield even if you decide not to go down that route, they are a centre of excellence and I’m very happy with my outcome. All the best in your AN journey
Hi Lupie Cathy, I was diagnosed with AN approx 20 years ago at Queens Med Nottingham. The neuro surgeon was keen to operate ASAP but I wasn't! I requested i be referred to Hallamshire Sheffield to check out Gamma Knife. The surgeon there said I should take the watch & wait approach. I had an MRI scan with contrast annually, 2 years ago I was put on Bi-annual scans with contrast, the next is 11th Feb. Watch this space.
Hi there! I know exactly what you're going through - I had a tumour pressing on my brain stem and asked my Neurologist if radiotherapy could be an option. He sent me to see a Consultant, who explained that, because of location and size, radiotherapy would not be advisable at that stage. I have since had an operation to remove the tumour - most of it was removed successfully and I am now being considered for radiotherapy to finish off the rest of it. I'll know more when I've had the next scan. W and w can be really annoying, but be guided by your team as to what's best. Ask them questions and ask for a second opinion if you don't feel you are getting the right answers. All the best....
Thanks so much for your reply. Can I ask the size of your AN when they first advised you shouldn't have radiotherapy and the size when the operated, and the time scales in-between. Obviously I know it's different for us all. I do hope you are doing well and continue to do so.
Hi! I'm not too sure about the size - only that it was decided it was too big for radiotherapy to be effective and that surgery would be the next step, if required. That was about 3 years ago and fairly soon after it was first discovered and at that stage it wasn't known just how fast it was growing. I would certainly ask about having radiotherapy - I found it helpful to have discussed the option and then you are not left wondering 'what if'. I had fairly regular scans and eventually it was decided that the op had to be done as the tumour was growing quickly. ( When a tumour is first discovered, there is no knowing how long it has been there). I had the op last October and am now in the process of follow ups. I have a scan later this month when decisions will be made regarding which type of radiotherapy will be the next consideration. As you say, everyone is different and location/size of tumour has to be taken into account. I was beginning to have real problems - balance, hearing were all badly affected
I think my reply went before I had finished! Since the op I have felt like a new person! Ok, the hearing hasn't improved, but balance (with a few sessions of physio) has really changed for the better. Maybe it's too soon to say just how things will work out, but watch this space! And above all, stay positive.
I had stereotactic radiotherapy on my AN in July 2013/4 - not quite sure - and although I felt ill afterwards for a while, I have improved a good deal. I do have constant tinnitus - worse when I’m tired ill or stressed. My hearing is also poor on my right side. But my balance has improved with constantly pushing myself to be as active as possible. I am now on a scan every 2 years but could contact the docs if necessary. My question during Covid has been is having an AN an underlying illness? Will we get the vaccination any sooner? No one seems to be able to say. I’m sure your doctors will be able to work out exactly what is best for you but there is no reason that you won’t make a full recovery after surgery - yes things/life might be different but you should be able to function normally. They always tell you worst case scenarios. Take care.
Thank you so much Sarah. I'm so hoping I'll just be on W and W if I can't have radiotherapy and it'll never grow! I did ask my GP re vaccinations and those with AN having any priority under vulnerable groups and he said no, even if you're having radiotherapy. I wonder though if you're on strong steroids as a result of surgery or swelling caused by radiotherapy then you would be clinically vulnerable. It's bad enough the waiting game with AN... Now we add world pandemic to our waiting game too. Stay safe and well. X
All the v v best. My prayers for you. (& all others here)
Haven’t looked in here for ages now. For me Still going thru the balance issues, heating issues sorted out now, more or less. Nov onwards had numbness waist down & legs. Have had MRIs etc. Possibly Covid I may have caught in March spiked up my MS! So all that still being looked at. Possible AN sort of shelved on one side, till others sorted.
Just going with it. Although pvt consultant had thought could still be an AN! Oh well fun & games!
TC all & stay strong!
First question is were you told this by an experienced Radiosurgery Team? If not then request a second opinion from such a team. My AN was far larger than yours and treated with no recovery issues. However, whilst I am NOT a Doctor, we all know that position is something else to be taken into account. For what it's worth, this was my experience - anarchive.org/chris.htm
Thank you so much for your reply and the link. I believe the team who reviewed my scans are a specialist team which include a neuro oncologist and a specialist radiotherapy person as well. However I am going to see what the feedback is from my next scan. I will make sure I explore all avenues. Thank you!
Hi, I had stereotactic radio surgery in July 2016, I was diagnosed with a large AN in April 2016 at 28mm. I was offered treatment pretty quickly and offered surgery or radio surgery. I opted for the radio surgery and lucky when being scanned each year since it’s reduced in size.
Side effects for myself was fatigue, I would get really tired but as time as gone on that’s eased and I’m now kinder to myself and know when to rest. This being said I have continued to work throughout. I have loss more of my hearing and found the hearing aid didn’t help. Generally my balance isn’t the best but I didn’t suffer from tinnitus.
Good luck with your treatment
Hi flappers. I had gamma knife surgery in 2014. My AN was 23.5 mm and pushing on the brainstem. I had lost most of the hearing on that side and my balance was affected. I have tinnitus which improves when I am wearing my hearing aid. I have had no side effects from the radiation and the tumour has shrunk. I am going for an MRI in June and will post my result. Good luck and I would be happy to answer any questions if I can. I am 73 years old.
Thank you so much! Hope your scan gives the results you hope for
Thanks. How are you now? Have you had your treatment?
Booked in for three sessions of linac radiosurgery at Guys on 16th 17th and 20th June, as last scan in Feb showed 7 to 10mm growth to 2.2. Was given option of either surgery or SRS and gone for SRS. Bit nervous re the impact as I manage all my symptoms now very well. I now have a baby granddaughter so hoping I can still look after her and travel etc.
Lots of luck, everyone I know who has had that treatment have been fine with no side effects. I belong to an AN group over in New Zealand where my AN was discovered and lots of members had had SRS. Not too long for you to wait now. Take care
My darling sister is over here at the moment for a couple of weeks from New Zealand (Baylys Beach). Great to know. Thank you so much xxx
how was your scan last June? Still showing shrinkage or stable with no growth I hope! You were right, all fine after three sessions of radiotherapy, the steroids were the worst bit, no sleep for 5 nights!! But other than a bit of fatigue and pressure headaches ( May have been the heat during the summer) it was way easier than I imagined. Hope you’re still enjoying life in New Zealand and not affected by the summer cyclones!
Hi flappers, all was fine with the scan, no sign of any change thanks for asking. We are enjoying summer in NZ and will return to the UK in May. How are things with you?
I did have some fatigue ( felt very heavy headed and like I was wading through treacle) which finally completely lifted about a month or so ago… so we’re off to Thailand for a month to celebrate life generally! Enjoy the rest of the summer and safe travels for May… Lin x
there great questions alwsys inmy mind too in case it gets bigger best wishes
we’re here if you need to ask anything if you ever do need treatment. Hopefully you’ll be one of the 40 percent where it doesn’t grow anymore!
Hearing 'restoration' post-op
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Facial drop and AN
