Yea had my appointment last week with my AN specialist assistant to get the most unusual news I have ever heard, they started off my going through how long ago my Surgery was which is just over 14years ago them mentioned it was just over 12years ago that I had Radiotherapy, so he explained what the Radiotherapy did and how it works and said after 8years the Tumour won't shrink anymore, so me and my Partner are looking at him thinking so what's going on why you telling us this that we already know super confused only for him to get to is Point that my Tumour has Shrunk by 0.002mm he then went on it saying it really Rare for that to Happen he then went on and showed me the Scans over the year's so I got a Picture of how the Tumour went from golf ball to half a pea and if in 3years time my scan show's no growth again I'll b discharged, don't get me wrong am Absolutely Buzzing with this News considering I was expecting to b going under the knife again b4 i turn 50 the amount of luck i have, my only concern well my Partners concern is how the Hell will i know if it starts to grow again and were do we go from here, you hear all kinds of Stories were it's started to grow again but I suppose I need to turn everything i hear off and just stay Positive on my Good News and stay away from Negative thinking, there's Two Questions id like to ask you all,
*1 I suffer with MH and know that alone is hard work to stay on top of, Anyone else who suffers with there Mental Health because of there AN or who was suffering b4?
*2 Anyone else been told a similar thing to me and how are you feeling and doing knowing that you've been or are due do b Discharged?
Happy and Positive Thoughts to you all Peace and Love Folks ✌🏻❤️
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Ga131078
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Hi - replying because I also got this news this year. Had gamma knife 10 years ago and have been having an MRI every 2 years since. This time, my follow up telephone consultation said the same - we won't expect to see regrowth after 10 years so you are discharged. I asked some questions - are you sure/what about cysts/what's the evidence etc. he told me that if I had any concerns, maybe go back to my GP in 5 years and ask for an MRI! Can I ask what hospital you are at? I presumed they would just go to an MRI every 5 years from now, but no, I am discharged.
I had no idea I'd be discharged, I have some health anxiety and it bothers me that they have closed the door, but I have to believe that this is normal protocol post (any) surgery and they are not trying to save money? First time I've felt unsure about things. I've had brilliant care.
Hi am under the Walton Neuro Centre but go to the ENT Centre for my appointments there both part of Anitree Hospital, I was told from the Off I'd be discharged after 20 years if everything stays good, unsure what nxt myself after my nxt appointment in August 2027, so here's to Positive Thinking for the both of us and no more treatment ✌🏻👍🏻👊🏻
I was at Queen Square in London. But now live in the north west . I know my symptoms have contributed to anxiety and this forum has really helped me to realise I'm not going mad, so I'm thankful for all the posts. From a mental health point of view, it's been nice to know I'm not alone. Good luck in 2027! 🍀
Cheers Bud, yea me suffered with Mental Health since I was 5 had bout's of Severe Depression and Stress and Anger Issues all due to trauma I've seen many of Counsellors and of late Psychologist, I now been told I have PTSD explains a lot along with ADHA which am trying to get tested for, No one in Life should be Scared to talk about things that are affecting them in their day-to-day lives. Stay safe. If you ever need to chat just drop me a message Peace ✌🏻🕊️
10 years of no growth seems a reasonable time to discharge you. I was similarly discharged after 10 years, but asked my GP to arrange a follow up scan at about 17 years for reassurance. That was done and showed all was well so I haven't bothered again - I had Radio surgery in 1998.
Well firstly you've been given good news so that's worth celebrating. It's probably odds on everyone with AN will have some form of mental health issue as a result, usually anxiety. Neuropsychology on referral with your MDT team helps enormously. I had Retrosigmoid surgery so not 100% versed in the radiotherapy approach. I do know there is delayed result for shrinkage of tumour which seems to have worked well in your case. It's often hard to know if the tumour is regrowing apart from re emergence of symptoms. Monitoring with MRI is really the only sure way. The tumour grows so slowly even though 3 years to the next one seems a long way off is probably the right time frame. I was told around 10 years before discharge unless there is nothing significant happening prior to this. I think it's a bit more cut and dried with surgery as the whole thing is more immediate and visible on scans, making movement with either growth or shrinkage perhaps more readable as there is no recommended time lapse to evaluate radiotherapy.
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Husband is facing surgery next week for the removal of acoustic tumour.
Just found out about my AN
Who has had radiotherapy without terrible balance effects etc on tumor 15mm pressing on brain stem or similar
Facial drop and AN
