Waiting for results of MRI, Google has taught me so much compassion...

[Cluster_Head]

I am in the UK. I was surprised to be referred just under a month ago for an MRI after a 'casual' visit to the Dr regarding a reoccurring loud strange tone in my left ear. I have had the tone for around six to 12 months (my memory is really poor and I cannot be sure when it started). The Dr said it was unlikely to be a 'vestibular schwannoma' but that it was important to rule it out. I had never heard of this condition before and of course, I went straight on the internet and nearly had a heart attack. It is unlikely that I have an acoustic neuroma, but I have learned so much and have read so many stories of courage. I do not know how I would react if my result revealed an acoustic neuroma. I had my MRI scan on Sunday and was told I will get my result within two weeks. I also had a hearing test two weeks ago and I have lost some hearing in my left ear compared to my test of eleven years ago and have been referred for CROS hearing aids. I have to wait up to three months for those. This could be age related though as I am now 45. I should mention that I am already completely deaf in my right ear since childhood. The main thing that would concern me should I have a tumour, is that it seems there is a chance of losing hearing in the affected ear, either from surgery or from the tumour itself. As I already have no hearing in the other ear it would be pretty bad luck. I do not have any other typical symptoms really, although I did have a numb cheek for the shortest period of time on the left side of my face last week and sometimes my tongue feels like I have burnt it, it is the tip of my tongue though and not the left side. I don't really get dizzy or vertigo but I do feel that my concentration and coordination are not what they once were, but this is probably the joys of 'middle age'. I feel bad for posting here when you all have already had a confirmed diagnosis and are having to live with the consequences of living with a tumour and the repercussions of surgery etc. For now, I am likely just suffering age related hearing loss and tinnitus. I just wanted to say though that your stories of courage have been a great comfort to me while I await my results. I wish you all the very best of health.

[anan88]

Oh, the waiting is no fun is it? Even if it was an AN, treatments can conserve hearing these days if you're lucky. I still have some hearing on the AN side after 2 surgeries and Gamma, so there's always hope. So many of my friends keep saying my hearing and general reduced concentration and sharpness are middle-age and menopause and I was never that sharp (!), it's nothing to do with the AN. They could be right! Let us know when you get your diagnosis, and good luck.

[Cluster_Head in reply to anan88]

I'm feeling lots better today about the whole thing. I had a word with myself and told myself to be more rational. I think writing this post helped. It made me put it all into perspective and helped me realise that the odds are very much in my favour and also that even if it was an A.N. then it is not the end of the world. Not long until I find out so will definitely keep you posed! In a perverse way, I wish I could at least have an excuse or reason to explain some symptoms rather than believe it is just getting older

Thank you for your kind words of support. Have a lovely day :))

[reallyscared]

Hi, pretty much my story too. I'm 49 and been suffering with a feeling of fullness and hearing my heartbeat and a ringing in my left ear since January. Eventually my GP referred me to an ENT and she said I have a little hearing loss in that side but it's almost normal then casually mentioned an MRI and a tumour. Heard nothing past the word tumour. Five weeks on and a lot of surfing the net I am terrified. MRI is today and tomorrow have been told I have to wait till 8t September when I see the consultant again for the results which is the day before I am supposed to be going on holiday. I'm not doing well, not sleeping and it's all I think and read about. Keeping fingers crossed for you. Let us know your result.

[Cluster_Head in reply to reallyscared]

We have VERY similar stories so far! I am a little embarassed that I'm thinking about it so much because my rational self knows that the odds are very slim of my having a tumour, but like yourself, I can't stop researching it. The radiographer touched my arm as I left and said "See you later" which has only exasperated my concerns haha. I'm sure it was just a turn of phrase but when you are feeling a little paranoid I guess it is easy to associate anything. I will let you know when my results come through and please also let me know how you get on too. I imagine that we will both have good news which will be perfect for your holiday. Try and look forward to an amazing break of relaxation and relief I've only a week and a half left to wait for the results. My radiographer did say that if it was anything really serious, I'd hear sooner, so there is that bit of comfort.

[Boohoo123 in reply to reallyscared]

Me too... got to go back for MRI as I was clostrophobic audiology wanted to rule it out but I had no reason to panic. Until I dis ova lettter from my dr surgery saying I have to have it. I have profound hearing loss high frequency very bad in right hearing aids don't work really

Good luck

[Njd59 in reply to reallyscared]

This waiting and not knowing results is the toughest bit of the process for most of us. It helped me to call it a "lump" rather than a tumour, and somehow our brains jump from tumour to cancer which is NOT right. I had 2 or 3 years of Watching and Waiting, the the scan showed by AN was starting to grow again, so I had radiosurgery in Sheffield which seems to have cut off the blood supply and the lump is shrinking. Try to fill your mind with enjoyable things and not to brood too much, which I know is hard. It's amazing to me how relaxed I am now, 4 years down the line, and just getting on living with the tinnitus, fullness and hearing loss. All the best to you in the months ahead. xxx

[reallyscared in reply to Njd59]

Thanks for the lovely comment. So glad you are doing well. You are right, not knowing is awful but trying to be rational.

[reallyscared]

Thanks, I'll try to take any possible chance remarks from the radiographer as just that but I am the queen of overthinking!! I am trying to focus on the scenery, sunshine and Soave waiting for me in Italy rather than this afternoons grim trip to the hospital. Please let me know your results.

[Cluster_Head in reply to reallyscared]

I hope your MRI went well! I felt really sleepy afterwards because the 'bed' thingy was so comfy haha. We should get our results around the same time. I wish I had the beauty of Italy to look forward to, I'm rather jealous

I am also an over thinker. It isn't a bad thing because it can leave you well prepared. The odds are in our favour though so let us hope for the very best. Try and let me know how you got on with the scan.

[reallyscared in reply to Cluster_Head]

Hi, I'm home and all done. It was fine, I'm not at all claustrophobia but not sure how anyone who is would be. I'll never feel the same about Elvis,Costello or the Pet Shop boys again. Now just a waiting game I guess.

[Cluster_Head in reply to reallyscared]

Haha I can imagine you won't want to listen to them for a while!. I opted for no music becuase I wanted the full MRI experience

Let me know as soon as you hear anything. It'll be interesting to see how our different hospitals differ with returning the results.

[reallyscared in reply to Cluster_Head]

Will do. Whereabouts are you?

[Cluster_Head in reply to reallyscared]

I'm in Plymouth

[reallyscared in reply to Cluster_Head]

it will be interesting, I'm in Durham. Fingers crossed for good news.

[Cluster_Head in reply to reallyscared]

I called the Doctors office yesterday afternoon just on the off chance that the results were back but no luck. What date are you away on your hols?

[reallyscared in reply to Cluster_Head]

Hi, 9th September. I have a follow up appt with the consultant on the 8yh.

[reallyscared in reply to reallyscared]

any news?

[Cluster_Head in reply to reallyscared]

Not yet I'm thinking of calling again tomorrow morning so that I can ask what the protocol is, whether they will write to me or call me so I know to not keep 'bothering them'. I know it will come back all ok but there is always that tiny part of me that can't stop worrying. My partner is really stressed about it too. Will be glad when I can move on. Waiting is so awful isn't it?

[reallyscared in reply to Cluster_Head]

It's horrible. My ENT consultant's secretary said I could ring her 10 days after the MRI so I am going to try really hard not to ring before then bit might cave in before then! I do think that its cruel making us wait this long. Def you should ring tomorrow, let me know.

[Cluster_Head in reply to reallyscared]

Just called them and results not back yet (although she did take along time to check). She said their policy is to call me if there are any concerns from the scan but advised I call back at end of week if I want to confirm all was ok with the results becuase they should be back by then. Somehow I think the results are back and she was reading them and everything is ok but just needs the Dr to sign it off. That's my guess anyway.

[reallyscared in reply to Cluster_Head]

That sounds like a reasonable assumption to me. I know that to them that seems ok but when it's you and your results you just want someone to say out loud that all is well. Do you feel less worried? I'm going to ring on Thursday and see if they can tell me anything, that'll be a week since the MRI.

[Cluster_Head in reply to reallyscared]

I feel a lot less worried today. Also I had to take my cat to the vet this morning unexpectedly which helped take my kind off of it all.

I agree with you that the doctors etc don't realise how much it means to us to hear confirmation that all is ok with our tests. I could have used my private health care with work and for just a fifty pounds fee I could have had this all done privately and I'm sure I would have had my scan and given the all clear weeks ago.

We live and learn! Definitely call them after you've given it a week. I'm sure they get people chasing their results all the time.

[Cluster_Head in reply to reallyscared]

Well, my partner bugged me to call Dr again today and I'm so glad that I did. Results are back and they say "All normal, no action required". What a massive relief! I hope our little conversation here will help others like us who are worried while waiting for their results.

Please let me know as soon as you get your results back.

Today for me is a fantastic day! Much love xxxxx

[reallyscared in reply to Cluster_Head]

Hi, brilliant new, so happy for you!!! Funnily enough I called the consultant's secretary at lunchtime. She said that the consultant is on leave till Tuesday but any scans that come back with ANs usually get to the consultant within a couple of days and they have had none from the MRI unit I attended so I am taking that a good sign. She suggested that I call back next Thursday. Still a bit worried but not as much. I will let you know and yes this has helped loads. Hope you and your partner do something lovely to celebrate. Luv Maria x

[Cluster_Head in reply to reallyscared]

We are going to celebrate by de-fleeing the poor cat. He is an habitual scratcher and also over groomer and he seems to love visits to the vet. We are hoping a strong flea treatment will sort him out. Bless him. Have a good weekend and fingers crossed for your results to come through very soon! Sean x

[reallyscared in reply to Cluster_Head]

Hi, finally got MRI result. All fine, no further action required. Sort of knew but so good to hear it said out loud. There is def something wrong so I have to see the consultant again as it seems that she thinks I have a tiny perforation in my ear drum but that I can live with. Thanks for your support, it really helped. Maria xx

[Cluster_Head in reply to reallyscared]

I'm so happy for you! I agree that it doesn't stop the symptoms and we still have to live with whatever is causing those, but at least we don't have anything too sinister going on. Have a fantastic, relaxing holiday! All the best, Sean xx

[Kristyll]

You seem to have got all the info. Best to not second guess but start your process once you have a diagnosis. It must be very worrying regarding your hearing. Thinking of you x

[Cluster_Head in reply to Kristyll]

Thank you. I will be fine. I've got the worry of my first ever hearing aids to keep me occupied I'm more concerned what colour they're going to be than anything else!

[Anza1974]

Hi I'm completely new to this, for the past year my problems started with a full feeling in my left ear ( no earwax) I then experienced total Loss off smell and taste eventually when my smell came back I started to smell diesel 😳 Thought this strange so made a visit to my gp, I presented my symptoms so my next visit was with ENT I had a hearing test all test perfect, camera up the nose was also with no problems, the doctor didn't like the sound of my symptoms so within the following week I had my first MRI 😩 I had that on Wednesday its now Monday , he said if there was anything to untoward he would personally ring me, or if all is okay a letter.... Hope and pray not to hear anything.. How long and when did you find out... This waiting is worse thankyou x

[Cluster_Head in reply to Anza1974]

The waiting can be terrible. I can’t recall how long it took to get the results but it felt like a very long time. I think it was just two weeks, but I called the Doctor’s office a few times. It might have been three weeks but not longer than that. I hope you get your results soon and that they come back all clear x

[Highwycombe]

Hi am a newby still waiting for MRI phoned secretary up to see if results are in and I heard her say oh them said I will send letter to gp.next day I had a nurses appointment at the time she then said oh you had an head MRI I said yes but the results our not back she kept on reading something then printed a letter off then went out came back with gp the gp then said you have cysts I said a cyst or cysts the doc said I don't know I had a look at the letter and it said dermoid cysts growing on something gland but am going mad not knowing what's going on hospital appointment not till April what do I do to find out.