Does anybody know what the re-growth probability is many years after stereotactic radiosurgery? I had treatment for an AN in 2013, which then decreased in size and then remained constant to 13x8x9mm until at least 2019 (last MRI). I've had a sudden increase in tinnitus in the past 10 days or so, so I'm a bit worried.
I recall the overall chance of re-growth for relatively small neurinomas is about 2% but I was wondering if regrowth can still likely happen so many years after...
In any case, I'm trying to get an MRI scan ahead of the next planned check (2022)
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cbpd
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Hi I had surgery to shrink my neuroma in 2016 ,my last scan in Oct thus year has shown it has grown by bout 2mm I'm now waiting for stereotactic radiotherapy would be interested in knowing what side effects you had from treatment , consultant told me there was chance of it regrouping
Hello I am also in same situation operated in 2015 last mri in August 2019 shows no changes but from last few days feeling horrible pain in AN side and muscle twitches on same side of face hope AN is not growing MRI due soon just want to know you are doing MRI in 3 years as my dr said I must do in 2 years previously every year but now onwards every 2 yrs ...
Hi I had gamma knife in 2012 and then had annual scans. At my five year scan I was told that my an had started growing again. It continued to grow and in May 2021 I had surgery (translab approach)to remove most of it. A little bit was left to preserve the facial nerve as the an had grown around it I had a scan the day after surgery and then another at the begining of November. All looking good. I am completely deaf in one ear, tinnitus has reduced hugely, balance improving all the time. I have facial palsy but again it is improving all the time.
Wait to see what your scan and consultant advises, but whatever the outcome I am sure you will be fine. Good luck
Thanks a lot for your reply! Can I ask where you are based? Imoved to the UK two years ago so one of the additional problems I have is that I don't really now how the health system here really works for this problem
Sorry, one more question. Did the surgeon find the operation more cpmplex given that you had had gamma-knife radio-surgery before? I understand that there's different opinions around, with some people saying it gets much more complicated and other that it doesn't really change much. Thanks!
Mhmhm, scary... let's hope I manage to find a good surgeon, if I need to go down that route. As far as I understand in the UK you can't really choose the surgeon, can you?
Yeah, I think it's about 2%, but I just seemed to understand that it would occur within the first 3-4 years (and given that my GK was 8 years ago I thought I was almost "safe" by now). Well, I guess let's see the MRI and then I'll do what needs to be done...
Just had a scan recently and it looks like mine is growing again but difficult to tell because I just moved to Scotland and the English Neurosurgeon hasn’t forwarded my notes! So there’s nothing to compare the last few scans. I had gamma knife at Sheffield in 2013.
The outside of the tumour was quite white compared to the centre in the scan and was definitely a different shape to before I had the gamma knife so I’m a bit concerned especially as it’s rubbing on my brain stem! Dr in Scotland says repeat scan in a year. I forgot to ask him the current size that would have given us a better idea although with the swelling you get after the stereotactic dose it might be just be that and it’s not gone down but after that length of time you’d think it would have shrunk! He also told me to come off the cinnarizine as he thinks it freezes the brain but to do it very slowly currently down to half a tablet not feeling much different but definitely getting a few balance shifts now and again.
The Tinnitus has actually been better recently but still there unfortunately but since the scan has been very up and down guess that’s a bit of stress making it worse! I really don’t want to go down the op route and the consultant says they do linac here in Scotland now which I’m not keen on either would rather go back to Sheffield for gamma knife! Thought I was safe too Cbpd! Oh well just have to wait and see I suppose. Good luck whatever route you go down x
Just got my MRI results and the AN is completely unchanged (if anything the size they state in the report is 1mm smaller on each side, but I guess that's just the measurement imprecision). Quite a relief! I guess tinnitus is then just due to stress/anxiety, let's see if it settles down. I have an appointment with the neurosurgeon in January to discuss.
Well, I guess luckily I had the chance to just go back to Italy and get an MRI privately for 200 euros. Going private, if you want a quick answer not to stress for too long, here in the UK is really crazy expensive)
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