So I find myself here like I am sure many of never thought you would. So I had an MRI due to loss of hearing on left side. Dr rang with my results yesterday found what looks to be a more than likely benign growth of 1cm on the right side. I am now getting referred to neurology and need a contrast MRI. I don't know what to expect, how to think or what to feel? I am hoping someone might have some advice or guidance ?
Update........
As I was unable to hear due to zoning out when the GP was on the phone, my husband rang the GP to get all the information again. It's a 1 cm AN or vestibular schwannoma as some people may know it. The GP said my results were send to the main hospital and I would be notified in due course, I received a text message from the hospital confirming an appointment for Thursday coming. I rang the hospital as the message didn't tell me who the appointment was with, I was told there were holding an MDT to discuss and that my appointment was provisional and they will confirm ,?:still waiting to hear so panicking after it's been reviewed the intial diagnosis is wrong 😬🙄
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M27b
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Hi there you should try not to worry or overthink this. I know that’s a tough thing to do. I can only give advice that I know by experience. It is a great shock having the diagnosis but there’s an extremely clever medical team that will do all the thinking and any worry they will soothe and try to answer your questions. MRI are scary. I’ve got another in two weeks. Just focus on each day and take each day as it comes. I am sure that forums such as this and asking your doctor and/or hospital contact what the process is moving forward. Easy to say not to worry but take it from a totally awful over thinker and worrier, it’s not worth winding yourself up because it will only upset you, your sleep and diet.
Thank you so much for the reply I really appreciate it, I have a fantastic supportive husband so very lucky. It's so overwhelming like you say I am trying not to think about (I am a huge worrier and super anxious normally). I so. Have any symptoms so hope that is a good thing. I am going to speak to my Dr again tomorrow with my husband so he can take in what I didn't.
Fantastic that your Hubbie is going to shadow you through this. Very important position too. So much gobbledegook is going to be said and if the doctors have to repeat them selves so that all the information is received by you both, it won’t be new to them. You need a tight unit between your husband and you. This is unfamiliar territory and you’re husband will be as anxious as you but he’ll be keeping it in check. Take each day and each appointment as it comes. Rest up and please accept any offer of assistance from your healthcare. Let us all know how things are too. This forum is new to me too. I never leant on anything or anyone and it didn’t do me any favours. I’ve found having like minded folk is valuable. 🌻
That sounds scary for you. As Wolfie04 says try to trust in the fab medical team and take each day. MRI is a noisy and confined experience, but it’s a relatively little time to deal with, for an accurate & clear understanding of your diagnosis. Stay calm and neutral and don’t let your mind run riot and keep off google. Continue to live your life, don’t waste it on worry. (I know it’s hard, but experience tells me this is right!) Good luck and may you find all the strength and courage you need to face what your in right now. 🤗
Most fine message. Try to have a support person with you too as information will come your way but you might not take it all in. A lot of stuff will be said and you’ve got enough to think about with your health and wellbeing. The need now is to “lean” on your support person. I unfortunately kept saying that I didn’t need help and that I could do it all myself but folk stopped asking and now when I could do with help and support it has gone. Definitely not worth going down the google route. You need facts and neuro teams are extremely clever and you must use what you are offered. Support networks, your doctor and your health team at the hospital might have a online/on call team that you can reach out too if you get overwhelmed. You need to share this situation and never feel alone. There’s always someone to talk too. 😇🦋🌻
Thank you for the response I am steering clear of google 😳 hopefully I won't have too long to wait to speak to the hospital. Oh the MRI machines are scaet I thought I was going to have a panic attack last week x
The MRI machine is a scary looking unit but strange! I’ve had more lie downs in the contraption than I’d like to admit. I think it’s what occurs before walking into radiography! One visit I actually fell asleep in the thing! I don’t know why but maybe that drink with my sister before hand had an effect! Got to tell yourself to lie still! It’ll take longer if you don’t. Been there too! One time the headset was on and fleetwood mac were playing! A bit of escapism. 😄 best not to overthink the pesky unit. Thank god someone designed it. Life saver for sure. In time they’ll get the design sorted and they won’t bang and clank. Definitely no stressing out. Just close your eyes and wander off! Best too 😎
Hi “welcome” to this forum - as they say wish we met in happier circumstances.
Yes have faith in our NHS & the medical teams. Keep good care of yourself Maybe pampers & treats - a great excuse & distraction while you are waiting. (Of course as much as health allows it).
On the day yes v helpful your hubby is there but of course he will be emotional too. Ask them for leaflets if available you can then see it later if needed.
The MRI machine - just take a deep breath & think “happy thoughts” . Images of things that calm you - the seaside ? A walk in the woods whatever is easy. Possibly try it out before & it will help you on the day.
There’s a proper technique where you breathe calmly, close your eyes think of a calming view, then say do a simple gesture - say touch your thumb with the index finger, then just breathe in & out and say a word .. say for eg “peace “ or “I’m fine “ etc.
After you do this many times the body associates all this together so that if you close your eyes do the same gesture & breathe calmly your body automatically gets into that calm state. I’m sure there’s possibly a proper instruction on the internet somewhere but hope it helps.
All the v v best we are praying for you!
I’m new here too & trying to get a diagnosis & help with the symptoms - all since last 2 months+ Take care.
Thank you for your message, sorry you find yourself here too. This forum seems really lovely with lots of support and guidance already. I am waiting for a call back from the Dr this morning to speak to my husband as I didnt really register what was being said. Thanks for tips on MRI a bit like focused breathe etc x
Yes it is a really nice forum with lots of support & helpful info from all. Hang in there it will be fine.
Yes & don’t worry about these scans, just think others have done this so it can’t be all that bad! And it gives such helpful info that Drs need to get you right again!
TC all the best. Now don’t let your hubby out of your sight - typical isn’t it if the Dr calls & he’s in the toilet!!
Ha ha just kidding 😂 . Helps to smile !
Take care. (& apologies if any words bother you, not intended) - Sarah J
No not at all laughter is the best medicine, yes we were just saying he can't leave my side until she rings. Yes that's right do everything it takes to get ok again. I have so many questions for her this morning, x
Ha ha thanks! Just needed to say it as every one is diff.
Yes get your list there will help.
I was just told that I had it in A&E no follow up so chasing Drs & med teams for it. May have to go pvt to get a MRI! Even that’s a long drawn out process! So at least your Drs got you this Scan. TC all the best & keep us posted when u can. SJ
Oh no sorry to hear you have been left like this mine was an incidental find as I have been experiencing hearing loss and the MRi was last Thursday Dr rang Friday ( which I new wasn't good news seeing as it was so quick) she they had found 1cm tumor but that was not affecting my hearing loss it looks as though its more than likely benign and will contact NS team to see what to do next. She probably said a lot more but I zoned out a tumor x hope you get somewhere with your Drs x
Aww poor you! Yes must have been a shock. I’m sure it’s gonna be ok . Be positive it will be ok.
Yes mine was similar hearing going in1 ear. But after antibiotics, sprays & symptoms getting worse to intense pressure, drooping face, numbness in that side of face- went to A&E. that’s where Dr there said AN! They gave me v v strong course of steroids & a consultants appt. went in thinking will get decree - he goes if it stays for 6m come back & will give a scan! Apparently A&E Dr had written AN on the records but it can’t be diagnosed without the scan & that’s the process for now!
So you are lucky you got the scan & follow up! I’ve been doing this for over 2 m now. Had another trip to A&E as numbness was getting worse they thankfully did a CT scan to rule out strokes - so thankfully that’s ok. Nothing seen there but at times AN’s not seen in CT scans.
But now trying to go pvt for another look & an mri to check/rule it out. And having to do it all myself! So your med team are much better (touch wood). TC
That’s just another name for an acoustic neuroma tumour. So the same thing, just fancy names each saying where it is located. “Acoustic” to do with sound. “Vestibular” to where is is in the ear.
Don’t worry about those you just keep yourself well otherwise take a deep breath & have healthy food, rest etc.
Main thing is it’s been found , YES it’s benign & small . And you have one of the best health service in the world - looking after You!
And you will be Fine & taken care off by the medical teams. (Here in my religion we add - God willing & giving You the strength)
If it worries you i.e all the medical stuff - just leave that to the experts & look after yourself. Eat, sleep & rest as best as possible! Take care !
(PS - & sorry if being “too cloying” or too much with my words - just trying to help. And I know we don’t really know each other & wouldn’t say these to a stranger but the forum I guess puts us in one similar place facing this!
I’m off to the A&E today again ! About a month ago an annual routine check up showed I possibly had holes in my retina. They had referred me into hosp. But after many chasing found there’s no running Clinic for Covid & so A&E (opth.) the best bet! So some of the headache has been for this rather than any tumour! Chasing Med teams still! TC
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I was diagnosed with a slightly smaller schwannoma behind my left eye on the 6th nerve. Like everything life throws at us there is adjustment to be had. I have cried, ranted and raved. Am now waiting to see if can get 2nd opinion as told mine is inoperable and the tumour and painmeds had wrecked my life,
Advice is take time, life changes, things change then it all becomes the new normal and you settle down. This advice was given to me and Im hoping its true
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