Referred for MRI - Suspected benign t... - Acoustic Neuroma ...

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Referred for MRI - Suspected benign tumour

Linseyb
Linseyb
29 Replies

Hi all

Thanks everyone for sharing as much as you have on this forum. I have been reading through and everyone’s questions and responses are a great help in an unsure time for me.

I have tinnitus and hearing loss in both ears but the ENT consultant advised there was a notable difference of 15 decibels in my left ear. He said this could be because of a benign tumour and has referred me for an MRI.

I have the MRI on Friday 27th December at the New Victoria hospital in Glasgow.

Can anyone offer any advice or suggest questions I should ask. Also does anyone know if I get the results then or do I have to wait for referral back to the ENT Consultant.

Thanks in advance.

29 Replies
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Rachr1

Hi sorry to hear your news. I can’t offer any advice as I’m in the same position. You may not get the chance to ask questions that day. I’ve already been told I won’t but I’m going to a mobile mri that isn’t at my hospital so hope you’re getting a better service

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Linseyb
Linseyb
in reply to Rachr1

Thank you. Yes my appointment is at a hospital. It is the largest hospital in our area so hopefully a good service. Thanks for the information re answering questions, that is good to know. I will keep them for when they call with the results.

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LisaBod

You will have to wait for the results. I had my first MRI on a Sunday morning and was called by the hospital the next day late afternoon for an appointment at 9am the next morning. I would go with the saying 'no news is good news' Good luck.

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Linseyb
Linseyb
in reply to LisaBod

Thank you, good to hear that they call with the appointment so soon after. I will go with no news is good news. At least I may have the result before New Year.

I am going to try and not worry about it until I have any confirmation. The doctor just worries me so much by saying benign tumour and not giving an example of what else it could be. As if he was sure that’s what it was.

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Sassy77

I didn’t get any indication on the day of the MRI and in fact it was nearly two months before I got the result. I suspect they termed my AN a small one, 1 cm so no big rush. Good luck anyway

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Linseyb

That’s crazy they waited so long to tell you! I am so anxious just waiting for the MRI to happen. I would be in pieces waiting that long for the result. Thank you for sharing.

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drdeanbellavia

Linseyb:

It is important to know the size and location of the AN; so ask them to show you on the MRI and tell you its size in mm.

If around 15mm you can get Gamma knife surgery, which is fast and relatively painless with little to no recovery time. If they suggest a "wait & see" approach it is OK unless: 1) the AN is becoming greater than 15mm and 2) is not in the bony vestibule between the ear and brain, which will crush the 8th cranial nerve and blood supply to that ear; this is why location is important.

Also, if you are not having significant balance problems yet, get rid of the AN before you do; I wish that I knew about my AN before that happened to me and it was too late.

It is odd that both ears are affected by an AN that usually effects only one ear, but maybe the +15 db ear was your worst ear before the AN. That's what happened to me, my better ear (+30db) got the AN and my worst ear ended up being my only ear. Usually, the AN ear is about 70-80 db lower than your unaffected ear indicating that you might be able to save some of its hearing if you get rid of the AN ASAP using Gamma knife surgery.

Dean

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Linseyb

Thank you for your reply. They advised I do have sensorineural hearing loss in both ears. It is just that there is a 15 decibel difference in the left. He just said straight away ok will send you for MRI to rule out benign tumour. I’m unsure of what else it could be. I will keep in mind this advice for what to ask and look for on scan.

Thank you.

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TripleB

Hi Lindsey, I went through a similar process in August (being told I was going for a scan to rule out AN) and if your experience is anything like mine they won't discuss the results with you on the day their role is simply to carry out the scan and pass the results to the ENT dept, I had to wait a month before I had my ENT appointment so didn't get the all clear until then so don't expect too much on the day.

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Linseyb
Linseyb
in reply to TripleB

thanks TripleB I can’t decide whether to call the imaging department and ask what there process is after the scan. I can then be prepared for a wait. Or make an appointment with the ENT and just hopefully get the results then.

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Bad1

I had to wait 6 weeks after mri for results and a further 3 months to see a specialist to find out the size and location. The nhs is very slow + consultants are on ‘work to rule’ due to pension reforms. There are many explanations for your symptoms and the odds are in your favour: mri is offered routinely for unilateral high frequency hearing loss and if it does turn out to be AN, it’s a worry but you will be well looked after and treated before it is disabling. Try not to worry and good luck

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Linseyb
Linseyb
in reply to Bad1

Thank you for the reassurance re odds being in my favour. That is helpful to hear and also that is routine to send for mri. Only a week and a half left until mri.

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Johnv102

Been through this same journey last year, it’s nerve wracking. My advice is to be very proactive. Start making phone calls, and keep going until you have the results. Shouldn’t really be more than 10 days before a radiologist has seen your results and written a report, so by then someone should know something.

The NHS is full of brilliant clinicians; unfortunately, when it comes to administration, the organisation is very poorly run generally. You’ve got to learn to keep chasing and chasing until you get what you need. For the admin staff it’s a job. For you it’s your life. Be polite, but keep going and going until you are where you need to be.

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Linseyb
Linseyb
in reply to Johnv102

Thank you so much for this. I think the usual thing for me to do is to be polite and wait for an appointment to come through for results and follow up etc. But I will keep calling and pushing things along as much as I can. However I am not in my normal state of mind. I am very anxious and forgetful and tired. I left the keys inside the car tonight outside my house for hours. Anyone could have stolen the car and I wouldn’t have a leg to stand on with insurance. I have zero patience and I am getting very agitated at the smallest of things. I just want this all to be sorted, I wish I knew before Christmas what was going to happen but just need to wait. Appointment is 27th December so will just enjoy my Christmas with family and friends and see what happens in the new year.

Thank you for the advice, yes there are great people in the NHS but it just takes a long time for letters etc. I wish it was more digital. I sit in work and wonder if a letter has arrived but it hasn’t. Sleep tight everyone.

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Johnv102

It ain’t easy at any level. My GP now offers online access to my medical records, along with making appointments and prescription renewals. I would suggest you sign up for this soonest, as yours should have this capability. Here’s why:

In my case my first MRI was August 21, 2018. The lovely ENT ordered it immediately after hearing test; loss in both ears, but rather worse on left side. She had a very serious look of concern on her face and explained the possibility of a tumour, so time to start worrying.

I was supposed to get the result by ‘virtual clinic’ (ie, a phone call) from St. Mary’s in London on September 4th at 10:00. No call at all. I started making phone calls in the afternoon. Someone at the hospital told me rather casually that they must be busy and would call later that day or tomorrow. Not the right way to handle this at all.

Next day no call, so I walked into the ENT clinic, where the two women at the desk told me I wasn’t supposed to come in; no kidding! I ignored that and explained as calmly and politely as possible. They gave me the number of the woman who ran the ‘virtual clinic’. No answer, no voice mail.

Finally realised my GP has probably had the MRI results, so another phone call. He wasn’t in, but another GP was there. He agreed to check, but was reluctant, as it wasn’t really his job to deliver such bad news, and he wasn’t really prepared. Nevertheless, he read it out to me and suggested I come in.

Long post, but it illustrates the administrative chaos that is so prevalent in the NHS. I could still be sitting on that bench outside St Mary’s waiting for a phone call that was never going to come, because somebody ‘forgot’ to do something.

The admin doesn’t get any better, but I won’t bore you with the dozens of other cock-ups and incompetencies.

Last thought, if you read the literature, we have the right, according to the NHS, to receive this kind of news in person in a private setting with a bit of support on hand, not left on our own with some phone call. Looks good on paper, just doesn’t happen very often.

Best of luck. Take it one day at a time, and try your best to be your best.

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Linseyb
Linseyb
in reply to Johnv102

Thanks Johnv102 I am just going to be as tenacious as I need to be with them. I have this constant feeling of a burning loss of air feeling in my stomach and I just feel so anxious waiting around. It is only 1 week tomorrow until the MRI but I like to know what the next steps are in life. I will perhaps call in advance and see what I can find out or try to make an appointment with the ENT. I don’t want to piss anyone off by being pushy but I am so nippy with my family and husband right now. It isn’t fair to me or them to wait unnecessarily. If only I still worked for my last company as they have full medical care and I would probably know by now. But I need to trust in the NHS and keep on top of everyone I need to.

Thanks for sharing your story also l, I hope you are doing okay.

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MrsDuke
MrsDuke
in reply to Linseyb

I am going through a similar position as you, I am also being snappy with my husband over the slightest things. I just want to feel my old self, I can put up with the tinnitus, it’s the rest the tiredness etc.

I had my MRI finally last Friday, in a Mobile scanner in the hospital car park.

It’s still the waiting now.

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Linseyb
Linseyb
in reply to MrsDuke

Same, I just want to know what is going on and to have results. Thinking of you.

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MrsDuke
MrsDuke
in reply to Linseyb

Yes thinking of you, been ok for a couple of days but today is a bad day, my leg seems week today

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Linseyb
Linseyb
in reply to MrsDuke

Sorry to hear you are having a bad day. I hope tomorrow is a good one x

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Johnv102

This is not an easy time for you, so feel whatever you feel. Hopefully your husband and family are understanding and supportive; they are probably just as scared as you in their own way.

It is most unfortunate that we are not very good at just sharing how we are feeling and how we are coping, or not. Men in our culture are not very good at sharing how we feel and letting it be known we are sometimes vulnerable, sad and scared sh*tle$$. Women are much better at it. Just look how many women are here bravely sharing, and how many men.

If it turns our you have an acoustic neuroma it’s really not that bad. It is eminently treatable, and outcomes are good. Not always perfect, but good. I am grateful every day that my tumour is not cancerous. I am grateful every day that it is not growing (3 MRI’s in a year, no change, another in Feb 2020) and that I have the luxury of deciding to watch and wait (my present status), and to consider gamma knife or surgery if I want to go down one of those roads.

Sometimes the annoying parts of this experience get the better of me, until I look at the Brain Tumour Charity pages on FB for 10 minutes, and I am back to grateful and humble. We carry on; some are not afforded that luxury.

Check this out:

It’s Mark Ruffalo’s story about his AN. I found it uplifting, hope you do too.

I am doing ok, thank you, at least most of the time. It’s been over a year now and it can get overwhelming from time to time; not everyone understands, and some are too frightened to ask plainly about it. There are still many I have not told.

Your MRI is just around the corner, and results hopefully not long after that. Do let us know the scan results. And remember the Patient Advice and Liaison Service (PALS). When the NHS is failing you, call them. They are part of the NHS, and their job is to intervene on your behalf to get things done.

Best of luck.

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Linseyb

Thanks John, yes I understand your feeling of being overwhelmed sometimes. I had the MRI scan today, so will wait now for the results and if any longer than a week I will ask for an update. Just bad timing with all of the bank holidays over Christmas. I will keep you all updated on any results.

It’s so crazy but the mind plays tricks on you and I overthink. The radiologist was so cheery and nice to me when she showed me in but on the way out she gave me the saddest look ever and just did a half smile and said to go back out to get my bag. I now immediately think she has seen something on the scan but just couldn’t tell me.

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Linseyb

Oh and thank you for the video, it was very insightful and great to hear someone’s end to end experience.

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Ballantyne56

Hi Lynsey, I was the same I can’t get mine operated on, I have just to wait and get MRI’s every 6 month. I also attend The New VIctoria

Margaret

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Linseyb

Hi Margaret, nice to speak with someone also in care at New Victoria. Can you advise how long it took for the consultant to contact you with the results and how did they contact you?

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Ballantyne56

Hi Linsey,

I had the letter under 4 weeks with my appointment to see the consultant as they had noticed my AN the way my AN is I am not suitable for it to be removed

Regards

Margaret

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Linseyb

Thanks Margaret, that really helps me to understand the wait I will have before I know. Take care x

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Linseyb

Hi everyone. So I had my results from the MRI and there is no tumour to be seen. So no AN.

I got a little impatient and called the consultants secretary who said he was on annual leave for a few weeks but she could give me the results over the phone.

They said the MRI came back unremarkable which means there is nothing of concern.

So I am to wait for an appointment to find out what the blockage is that is causing the 15 decibel difference in the left ear.

Thank you so much to everyone for their support on this forum and for the direct messages I also received giving support and asking how I am doing.

I will keep you guys updated as I know some will want to know what the other options could be if it is not AN.

Take care x

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Ballantyne56

That’s good news Linseyb

Regards

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