Sammieslump

[Sammieslump]

Hi, I’m new on here, been reading through posts trying to help me get to grip with my diagnosis... I’m bricking it! Since August 2016 I suffered what I thought was an ear infection and so did my doctors was put on antibiotics yet pain and fullness still there...had audiology test as was suffering tintitis Abd heating loss, was referred to ent fir mri long story short docs messed up and I wasn’t seen till may 2017! More audiology tests still deaf mri I bottled very chlosyerphobic! Finally at ct with contrast managed blindfolded mri ( well pleased with myself) Abd cane back an 1.5 com x 5mm on nerve stem! Referred to Addenbrooks top neuro surgeon for skull base . Thus is on 24 November, currently signed off work as on stemetil as balance is hirrenfous, got every symptom going, headaches jaw ache toothache nausea .... done lots of research and radiotherapy to me is nit an optioon frankly options are simply terrifying ! Started meditating to keep calm/control balance better all in all very frightened, trying to get as much info as I can before my appointment once that’s done I know where I stand... hoping any of you brave people on here can help me? I’d be so grateful of any input to help me get through this scary time x

[Debra1963]

Oh Sammieslump sounds like you are having a real hard time. I have not long completed 30 sessions of radiotherapy at Addenbrookes. I get a little claustrophobic and was quite scared but the mask is breathable and to be honest you don't spend too long for each session. I was very lucky not to have many side effects. I live in Norfolk and worked the mornings and travelled the 120mile round trip in the afternoons. My balance is off slightly and I have a fullness in my ear and hearing loss. Very easy to say but don't panic. I hope your appointment goes ok. Let me know.

[Sammieslump in reply to Debra1963]

Thank you so much for your reply Debra x I am so scared, I’m so worried about each treatment process, first definitely thought yes to radiotherapy, but could no t go through my panic zone ie tunnel like mri and certainly not the head brace biggest fear! ... but mask seems more palatable so warming to this idea a bit more than surgery........ especially now hearing from you thank you .... questions I shall be asking is what is best? As I read radiotherapy only works for tumours under 2 cm and it also swells after treatment so would this cause major side affects?, as I already suffer full pelt with these? ..... many sessions too also puts me off ...

crikey you reAlly are put through the mill with all your travelling too bless your heart . May I ask what size is your tumour? And does size dictate to which option is required would you know?

Once again thank you for replying and I certainly will be updating my progress . Fingers crossed to us all x

[Debra1963 in reply to Sammieslump]

I took on board the information given to me by the consultant and made my decision based on their expertise and what was right for me. My tumour is 22x10x8mm. I had a couple of panicky moments when wearing my mask but the radiographers were brilliant and I just sort of wiggled into place, put my head in a different zone and put my brave pants on. x

[anan88]

Dear sammieslump, you will feel calmer as you get used to the idea of how many people go through what you're going through, and come out fine the other side. The emotion is kind of worse than the AN itself, which is just a few cells misbehaving. The emotions can run riot though! My Gamma Knife therapy was done in the May after surgery in February. That surgery couldn't remove the tumour (3 cms, cystic, wrapped round a couple of nerves) completely, but they "debulked" the cyst, and then the Gamma was to get the remaining part. I also had a CSF leak, so they went in again a couple of months later, just for the hell of it. Doctors love all that stuff........ My Gamma was only ONE session, somewhere between 30 and 45 minutes, with a frame on the head. You're given a bit of medication to keep you calm, but it's all a bit of a non-event really. I was home (by train Sheffield to London) the same night. The hearing loss, wonky balance, tinnitus etc. (now 6 years after) are inconvenient and tiresome, but they (Addenbrookes-wow, lucky you!) are very used to dealing with these ANs. You'll get totally bored with it all. It's hard on your body keeping panic up for long, so try to give yourself a break from it for a while. Take life as normal, and tell yourself you can go back into panic mode if you want when you've had a bit of a rest. Best of luck, we're thinking of you. X (PS, after swelling up after the Gamma, the tumour shrank and is now totally stable and tiny. Yours will be too).

[Sammieslump in reply to anan88]

Wow anan88 amazing that you are ... you have given me such hope and an excellent insight of what’s to come and have helped me get to grip and understand what is going to happen. Thank you x ... have researched that surgery was best first then gamma knife to finish off and was aiming for thus route and now hearing your story of events has really helped me thank you again and I wish you speedy ongoing recovery and healthy happy life ahead of you x

[Debra1963]

Hi sammieslump how did yesterday go? X

[Sammieslump in reply to Debra1963]

Hi, sorry late update... ok I’m on watch n wait, 6 months time mri and if grown apparently I shall be having surgery, was told by nurse stop taking stemetil ... just stop taking.... found odd so not stopping as it helps with my bajance dizziness will be clarifying at clinics, have an online contact fir any questions and to go back if symptoms worsen although suffering horrendously !!! Got clinics to go to for tinitis and bajance, I’m 70% deaf in ear no use having hearing aid as an is a blockage and hearing aids won’t help... all in all still hanging and going back to work Timor but I’m lucky as work is fabulous regarding my AN.... so not great but nit bad 👍🌟

[Sammieslump in reply to Debra1963]

Thank you fir asking debra1963 x