PS. I am a 55 year old female ! My username is my favourite band in case you were wondering !
Gender: PS. I am a 55 year old female... - Acoustic Neuroma ...
Acoustic Neuroma Support
Well hello Tabbycat ! I found it hard to think of a username tbh ! X
Just checking in to ask how you are doing? Have you had your second scan with contrast yet? Please keep in touch and let me know how you are doing.
Thinking of you,
Hi there ! My 2nd scan is this coming Monday . I’m quite worried because my tinnitus is so bad 😞 it seems to be getting worse but maybe that’s my anxiety.? Had a few tears but at least I will find out what’s wrong with me . The waiting is awful . Everybody has been so amazing and supportive and it really is helping . I’ll let you know how it goes . Please keep your fingers crossed 🤞 and thank you 😊
The waiting has always been the worse part for me. My initial diagnosis was in November 2014 at my local hospital. I had been referred there by my GP as I had suddenly gone deaf in one ear and felt dizzy a lot of the time. The consultant did loads of tests and then suggested I had an MRI 'just to rule anything sinister out'. About a week later he told me that he thought I had a brain tumour and it might be an Acoustic Neuroma. He referred me to the skull-base team at Leeds General Infirmary (LGI).
I was terrified - I'd never heard of ANs and neither did anyone else that I knew. My GP was very good and found some basic information for me. She told me it was quite rare and not to worry about it too much😼!! I eventually got the appointment letter from the LGI, but I had to wait another two months before I met the team and was told it was definitely an AN.
You can imagine what that Christmas was like! My husband had come to the appointment at the local hospital so he knew, but I didn't tell anyone else in the family or at work. I wanted to wait until the initial diagnosis was confirmed and we knew what we were dealing with. I told our two daughters and my immediate boss at work after the appointment at Leeds. That was hard, as soon as people hear the words 'brain tumour' they immediately think cancer and ask you how long you've got left?
But, life carries on! An AN is not cancer and is very rarely life-threatening. The AN I have is not going to be passed on to my children. I've met lots of people living with AN through BANA (British Acoustic Neuroma Association) - we used to go to their support meetings before COVID-19. Many of them are still working, getting married, having children etc. The guy who runs it, Mark, took up marathon running - I checked that's not compulsory 😹!
Please feel free to ask any questions if you think that will help and I will try to be as honest as I can.
You will be in my thoughts and prayers on Monday,
Hi Tabby ., thank you for replying. 🙂 so can I ask you what your treatment was please ? Did you have radio surgery or have it removed or watch and wait ? I have so many questions. How big was it ? My family know I’m having the 2nd scan on Monday and I’ve told my boss . My mum is beside herself so kinda wishing I hadn’t told her until I know what I’m dealing with . My aunt has just been diagnosed with Breast cancer this week so it’s been a tough 😞 I will let you know what happens and again thank you . There is no Alterbridge emoji .. lol
Hello Alterbridge 🌉
Once I'd been to the LGI I was put on 'watch and wait' with yearly MRI scans. After a few months the tinnitus started and continues to this day. I was referred to the audiology department at my local hospital for more hearing tests and had a hearing aid fitted, which helps with the tinnitus.
I had a right side acoustic neuroma diagnosed in 2014 when I was 61, they said it was about 8.5 mm ( my first MRI at my local hospital was without contrast so not as accurate). I was on wait and watch for 4 years with annual MRI scans. Each year the tumour grew (16.3 mm at its maximum), so I chose to have Gamma Knife Surgery in 2018. I have had two MRI scans since which show my tumour has stopped growing.
Any more questions, just ask.
Hi Tabby .. well today is the day I’m having the scan with dye . Feeling anxious but hopeful after reading your journey .. it’s been a long one for you but you’re still here thank god . I’m going to take flappers advice and imagine I’m in a spa being injected with the fountain of youth ! I’ll keep you posted x
Glad to read you got through the MRI with contrast - managed to keep still and got it done in one go! Little victories!
Are you still at work this week? Have you got your family around you? Just be kind to yourself over the coming days as you wait - plan activities that you enjoy - listening to music, reading a new book, watching a favourite TV show or film, going for a walk in a park or in the countryside, having a warm bath, phoning/Skyping/whatever a friend, eating a favourite food or meal etc etc. Just small things to look forward to.
I find it very hard to read an actual book when I'm stressed, so have got into audio books - our local library has loads of them to download for free or check out BBC Sounds app. I'm also working my way through my Netflix list and watch a film or a series when there's nothing on TV except people going on about COVID-19 or Brexit - just about to start Dinnerladies with Victoria Wood, Julie Walters and Maxine Peake (when she was straight out of drama school ) - still makes me smile. I do like to keep up with current affairs, but some days it just all gets too much, so I limit how much 'news' I listen to.
Loved flappers reference to 'your best big girl pants' and being strong women!
Keeping you in my thoughts,
Tabby, the warrior, cat😾
Hi Tabby cat . So sorry for late reply . Yes I’m at work but my last day tomorrow until next Tuesday for one day then back on the 4th . Thank you for all the tips and advice and I’m also working through my Netflix list ! The queens gambit is brilliant if you haven’t seen it and I STILL don’t understand chess ♟.. flappers made me and my hubby laugh with the big girl pants too and boy do I need a laugh 😂 I do actually physically feel better when I’m laughing so maybe I should watch some old Peter Kay shows . Funnily enough I’ve just been watching dinner ladies as I never watched it 1st time around . Very funny .. Petula Gordino 🙂ace name . So it’s just a waiting game now but I’m planning a nice Christmas dinner with hubby and a long walk . I live in Holmfirth if you know where that is ? Anyway it’s sleepy 💤 time now . Thank you and flappers for cheering me up and I would love to meet you both one day x🙂
Yes, I know where Holmfirth is. My nephew and his family live near Huddersfield and my daughter recently bought a house on the outskirts of Oldham.
We have been supermarket shopping this morning, so I was braced (with my big girls pants on), list in paw and ready for action! But there were no queues to get in or at the checkouts and we got everything we needed. I've been finding the whole thing a nightmare since the first lockdown what with one adult per trolley (especially when I'm having a wobbly day) and people not wearing masks and refusing to keep their distance - but not as bad as I expected today. 😺
Hope all went well at work today and that you enjoy your time off. Have a good Christmas break with your husband - eat, sleep and relax!🎄🎅🏻🎁
You are in my thoughts and prayers,
Just wondering how you are getting on? You said you are back at work this week - how's that been? Any sign of a results letter/email/ phone call yet?
Thinking of you,
Hey there lovely lady . Yes I finally got my results and thankfully I don’t have a tumour!! What I do have (that looks like a tumour ) is Asymmetrical pneumatisation of the petrous apices .. no me neither ! Basically it’s fatty marrow on my left side which shouldn’t be there . Quite a few other anomalies too but the report was all medical jargon . Even my doctor didn’t understand it all but whatever it is it isn’t life threatening so I’ll take that for now . My tinnitus is actually getting worse so I’ll have to sort something out with my doctor. He’s actually not completely happy because my diagnosis has raised a lot of questions . Next step is an ENT specialist so hopefully I can get some relief . Thank you so much for asking and I’ll keep you posted x 🙂
Thinking of you today and hope your scan goes well and you get a call quickly to go through the results. We all hate the wait! We are dealing with something already tricky during extraordinary times so be extra kind to yourself! X Lin
Thank you Lyn. It’s at 2:30 this afternoon. My tummy is feeling very fluttery . I’m hoping I won’t have to wait too long for the results because the waiting is the worst 😞 I’ll let you know how it goes and hope I don’t have a reaction to the dye! Xx
If it helps, I am mega sensitive to lots and lots of things and I've had the contrast dye 3 times, twice for a back issue and once for the AN... And no reaction, no problem at all. Try to pretend you're in a lovely spa and they are inserting the fountain of youth into you😂. X
Hi Lyn . So I’m glad that’s over and done with and you were right . No problems with the dye and I stayed very still for 1/2 Hour. The Radiologist didn’t give much away except to confirm that there is something in my ear canal . Tbh I was in a bit of a daze so can’t quite remember what he said . I will get my results in the new year but I suppose if it’s urgent they will let me know sooner ? He told me not to worry and to have a nice Xmas but naturally I’m worried sick 😞 I just want to know now as I don’t think I can take another wait . It’s even harder because I can’t be with my family . Sorry about this self pity . I need to get a grip don’t I ?! X
Oh lovely, it's so HARD not knowing and waiting and everything difficult is amplified so much more because of the pandemic, it being Christmas and of course then not being able to be with our favourite people. But, you've got through another step with this the scan. I received the results two days later on a phone call. I guess it will totally depend on how quickly the teams are sharing info as to when you'll get more info. I would email or ring the GP or whoever referred you for the scan today and ask if there is any way of them chasing, but then accept you've done what you can and actually speaking to someone in the New Year is manageable and you can set it aside as much as the alarm call in your ear allows, and appreciate whatever small pleasures each day can bring. Have a cry, say that you are scared scared scared ( say it out loud) write down all your fears about it. Then close the book for a week or two and breathe. Really properly have a BREATHE. Slowly and fully, and slowly out. Until you feel calmer in your belly. Then pull up your best big girl pants ( we've all got our favourite pair😘) and know you can manage this, and you're not alone. I think we can private message through this so ANY time you feel over whelmed, please reach out. And let the feelings come out. And then know us women are warriors and can deal with SO MUCH because we know how to comfort othes. Look after yourself as you would someone else through this. One day at a time xxxx Lin
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