Waiting for MRI results - not sure how I will be told (UK)

[RaineyP]

Hello

I am waiting for the results of my MRI scan and am slightly confused as to how I will be told the results!

When I saw the consultant he asked for my phone number and said he would call me when he got the results (which would be about 2 weeks). Yesterday I phoned his secretary as I had realised that I had only given my home telephone number and not my mobile too. His secretary wasn't there but another one said she would take a message and pass it on. When I explained she told me that the consultants don't phone, they write to you!
I said that is what I had been told and I wasn't chasing the results as it is not quite a week since the scan.

When I got home from work my husband said that the hospital had phoned and the lady had said that as far as she could tell, the scans were clear and there was nothing serious to worry about. She said that the consultant would write to me with the results. Then he said that the person who had phoned was the person who did the scan - which I thought was slightly odd.
I phoned the mri department and they told me that the only person who would tell me the results would be the consultant who had requested the scans!
I am now slightly confused as I would have expected a follow up appointment with the consultant to discuss the scan results, but all he said at the time was that he would see me in 6 months time - to see how I was getting on.

I know that I will get the 'official' results by one means or another - but wondered what other people's experiences were when they were given their results.

My journey this far hasn't been without a few 'bumps' along the way - the audiologist I saw in May said that my hearing was fine, yet the test 9 months earlier had identified high frequency loss!
Then, when I had further tests in June (and failed a dichotic test quite spectacularly) the audiologist said he was going to refer me to the audio-vestibular consultant to see if there was a medical reason behind my problems and I would need a scan. It then took 10 weeks for that referral to be made (and that was because I had chased it about 6 times!).

I understand that an AN is not considered 'serious' in the context of brain tumours but am not sure whether to think that the scans were completely clear - or clear of anything 'serious'.

I had a head scan and a scan of the internal auditory area - both without contrast.
As odd as it sounds, I am hoping that something will have been found - as then there will be a reason for my right sided hearing loss ~(which has dropped 25dB between May and September) and the tinnitus (which has got worse since about June time).

Sorry this post is so long, but I really would appreciate hearing anyone's experiences with the NHS in the UK.

Thanks

[Pam Fraley]

My doctor is at University of Michigan.  He schedules my test appointments in the morning and my consultation with him in the afternoon of the same day so that he can review the results at that time.  I do not have to wait at all and I really appreciate that he does this.  It certainly alleviates a lot of stress not having to wait for results.

[RaineyP]

Hi

That definitely sounds like a better system and much less stressful.

I guess the difference is, you are on private healthcare and I am on the NHS - which makes a big difference!
I was considering getting my MRI done privately but the NHS appointment I was given was pretty quick - I saw the consultant on Tuesday 24 September and had the scan on Sunday 6 October, which is very quick in NHS terms!!

I guess it is going to be a case of wait and see what news this week brings 

Thanks for replying.
xx

[kssquared]

Hi RaineyP.  I just had my MRI at Southampton General  yesterday through the NHS and I too was wondering how long and by what means I would get the results.  My follow up consult with the ENT is only in December !! I hope I can get the results before then.

[RaineyP]

Hi kssquared

Fingers crossed all is ok with your scan results 

I was told that the results would be 'about 2 weeks' - which could be 10 days of 3 weeks I guess 

I did contact my consultants secretary again this week and she confirmed that sometimes the consultant does phone people about their results and then follow up with a letter. I said that I thought I might have got a 'follow up' appointment - like yourself, but again, it seems that each consultant does things in a different way - and this can also vary from patient to patient 

I had my scans at the QA hospital in Cosham.
Which consultant are you under?
Mine is Victor Osei-lah - he's a really nice person with a great sense of humour.

If your follow up appointment is not until December you may want to contact your consultants secretary in about 2-3 weeks time - if you haven't heard anything by then. You might well get a letter with your results.

As soon as I hear anything I will let you know - as I fully appreciate how you are feeling right now.

Take care
xx

[Islandgirl]

I thought I would chip in about my UK experience.  Don't hold  your breath.  It can be a very long winded process.  I think it differs throughout the UK, however I was diagnosed with an AN through an MRI at QA hospital Cosham in April 2011.  It took the ENT consultant nine weeks to write to me and tell me I had a small benign AN and that I was being referred to Southampton Neurology. 

Following this I received an appointment from Southampton for some four months later in October.  I managed after considerable stress to get this brought forward to August 2011 by my GP writing to Southampton.  I saw the consultant and was left in watch and wait and expected to have another MRI at beginning of April 2012.  No appointment came, oh joy, what a surprise.  I chased this up and had the MRI at QA again at end of May 2012.  Saw the consultant in Southampton again at the beginning of July 2012 but only by making a private appointment as I wasn't prepared to wait another four months for the results.  He recommended in July gamma knife treatment for me at Sheffield Radiosurgery unit as my AN had grown quickly.  Fast forward to end of September I contacted Sheffield to find out if they had my referral.  You can guess the answer.  I then went back to Southampton and pointed out that Sheffield had not had my referral yet. Again surprise surprise it hadn't yet been signed off or even sent.  As you can imagine all of this was causing me considerable stress and had it not been for one or two very helpful people along the way and this forum to read I might have gone out of my mind.   

I eventually got to Sheffield Radiosurgery unit for my treatment on 8 January this year.  Now there is some good news.  The NHS department in Sheffield for this treatment are highly efficient and professional and I cannot say enough about them. You feel so much more confident when dealing with people who specialise in AN's and appear to care about you.  They are absolutely the best in my view. Well here I am 9 months later and I never got the six month appointment follow up I was expecting from Southampton.  I never even chased it because it's nothing but hassle and I figure without an MRI at six months there is nothing they can do. I have however already received my next MRI appointment at QA Cosham for the end of January 2014 but I don't know who has ordered this, Southampton or Sheffield.  I can only assume it is Sheffield because nothing happens without prompting at Southampton, for me anyway.  It will be 13 months by the time I get the MRI  since I have been seen by anybody and by the time I see the consultant or receive a letter telling me the result it will probably be sixteen months.  At least I do have the option to go back to Sheffield for follow up if I am desperate but since I live in Portsmouth it's a pretty long trip. 

Meanwhile I am left wondering what this thing is doing in my head and if this raging tinnitus which is by far my worst sympton and affects me severely every day of my life will ever improve.  It seems not although I desperately try to ignore it and lead a normal life.  My AN was 17mm x 11mm x something when it was treated so I am hoping it is diminishing

Moral of this tale is if you are in the UK and you do have an AN it is not an easy ride believe me.   The truth is in my view there is little they can do about the symptoms so they don't involve themselves that much. Other than keeping an eye on the thing and making sure it doesn't grow too large that's about it. 

[kssquared]

@RaineyP

My consultant is Mr Hellier, although I have not yet seen him.  My initial consult was handled by another person in the practice, so I am hopeful at my next visit I will get to see the real deal.  Thanks for the advice, I'll chase up for results at the end of the month as the waiting is killing me.

@Islandgirl
Wow, that's been some road to travel !  Thank you for sharing your experience.  Seeing as I am dealing with Southampton, I hope I do not have the same experience.  Good news that you have had the surgery but clearly the tinnitus is a major issue.  Is it any different after having the surgery ?

[Islandgirl]

It seems worse and I didn't think t could be worse.  I guess that's why this whole journey is disheartening sometimes.  You have the gamma knife and I'm grateful for that but it doesn't change the symptoms one bit.  I hope you get quicker responses from Southampton than me.I will be interested to hear. If you are dealing with ENT it may be completely different than Neurology I don't know.  As I said previously it's completely different at Sheffield. They are excellent.  Another thing about Portsmouth is that I was referred to QA tinnitus clinic.  I went to a couple of appointments not that there is anything they can do but early this year my appointment was cancelled.  When I enquired about this I received a letter to say the tinnitus nurse had left and was not being replaced.  Unfortunately this is why my view is pretty dim overall apart from the gamma knife unit. 

It seems everyone has their cross to bear with this darned thing some far worse than others and I am lucky I don't have balance issues and I still have about fifty per cent hearing in the AN ear although it has worsened since the gamma knife treatment.   Sometimes I wonder if what I have is more than tinnitus.  Very often it feels as if there is something crawling around in my ear like an insect or something.  Other times it's as if drops of fluid are leaking out but there is nothing there.  It just hisses constantly as if a switch has been left on with no reprieve.  I don't know if anyone else has this type of tinnitus.  I'd like to know.

[RaineyP]

Hi Islandgirl

Your experience sounds absolutely horrendous and has made me realise that I have actually been quite lucky with how things have gone so far for me.

We all know that the NHS is stretched and, in my (humble) opinion, since QA was made a 'Super hospital' things have deteriorated. They are great at 'emergencies'  - last November my mum collapsed at home and was rushed to QA where they discovered that she'd had a brain haemorrhage, which the consultant described as 'of catastrophic proportions - the worst they had ever seen'. We were told that she wouldn't last the night - and then were hit with the blow that my dad was in another part of the hospital as he'd had a heart attack! Both QA and Southampton Neurological unit (where mum was taken the next to have the aneurysm coiled) were absolutely fantastic. Through her sheer determination, mum did survive and came home at the end of January this year and dad is well again too.

You said that when you were first diagnosed in April 2011 you had a small AN, yet at the time of your next MRI in May 2012 it had grown considerably. Throughout that period it sounds like you had experienced quite a bit of stress with appointments etc. and I just wonder how much that stress affected the growth of your AN.

At the moment, I do not even know if I have an AN - but I do know that from when my I first started to notice the hearing loss in June 2012 (and had it tested) through to May of this year my hearing and tinnitus got a lot worse. I wondered if this could be connected to the stress of my parents being ill.
Then, when I saw the audiologist in June and he raised concerns about my auditory processing abilities and said I would need a scan to establish if there was a medical problem causing it, I have to confess that I was straight on the web looking up what it might be (bad move I know). Since then my hearing and tinnitus has gotten a whole lot worse (hearing down 25 dB between May and September) and I wonder how much that is to do with stress?

I know that stress and tiredness do make tinnitus worse which is ironic when you think that you are going to get stressed if the hospital are not being very supportive, or if takes months before you are even told what is wrong with you (leaving you to think the worst!).

I completely understand your comment about feeling like you have got something crawling in your ear - I quite often react as if something has just flown into my ear and I try to get it out (which can be quite embarrassing when in public!!)
My tinnitus is a constant high pitched whine in both ears and pretty loud too!

I am assuming that the problems I am experiencing are down to an AN, but I have problems processing noise once my ears have received it - which doesn't seem to be something that features in the 'typical' AN symptoms!
That may be the subject of a separate post!

Oh well, I guess it is only two weeks today (yes, Sunday) since the scan - so next week may bring some news.

I hope you find some relief from your tinnitus, although I know how difficult that can be.

Take care and thanks for taking the time to write.
xx

[RaineyP]

Hi kssquared

It is interesting how different hospitals handle similar situations - in that you have not seen your consultant but one of his team instead. When I had my audiology appointment in June I was seen by one of the ENT team at QA who referred me to Mr Osei-lah who is an 'Audio-vestibular Physician'. I am not sure if that is a different field to Mr Hellier - but having 'Googled' 'Audio-vestibular Physician' there are not many in the UK!! 

This may bring me back to the question of whether I am correct in assuming that my problem is being caused by an AN! In June, the audiologist identified an 'auditory processing' weakness in my right ear which seemed to be of a bigger concern than my hearing loss. At that time it was a 'slight' loss in high pitched frequencies in both ears. When I was tested again in September my right ear had dropped 25dB in the high frequencies with some loss in the lower frequencies. My tinnitus had also significantly increased in that time and is now in both ears and not just in the right ear (as it was in June).

Mr Osei-lah recommended using an 'App' called 'Hear Coach' to help 'retrain my hearing'. This was an excuse to go an buy a 'Samsung Galaxy tablet'  . When I tried the 'speech in background noise' tests I didn't really have any problems, but when I tried the 'memory' test one I fail miserably 
This test has 5 different levels where you listen to a series of numbers and then type them into the keypad. Level 1 gives you 3 numbers, level 2 gives you 4 numbers, level 3 is 5 numbers and so on. I am ok on level 1, get 60% of level 2 correct and have never got beyond level 3 as I can't remember that many numbers!!

Auditory processing problems doesn't seem to be listed as a 'usual' symptom, which leads me to wonder if the problem is being caused by something else!!

Hopefully I will hear something this week - and even if it was 'bad news', it has got to be better than being in limbo and imagining all sorts!!

xxx

[Islandgirl]

Hi Raineyp

Yes I agree NHS treatment n the UK can be fantastic especially in an emergency.  It seems to be the clerical and admin side where the problems lie in my experience.  The doctors and consultants don't have the support systems in place and it varies widely. I also agree about the stress side of things. I first noticed my ear problems in August 10 when my mother was going downhill.  It was a highly stressful period.  She died in the November and the hissing had started by the end of December which took me off to the GP. My AN apparently grew from 11mm to 17mm in one dimension in that first year but I can't even be sure of that as my consultant didn't even have a copy of the first one with him at my appointment in July 11 when I was referred for gamma knife.  I know the pre treatment size from info I got at Sheffield.

You have been through a very difficult time yourself with your parents and I am sure it takes it's toll.
I hope you don't have an AN but if you do I hope you get a bit more attention than I did early on.  I shall look out for your posts.  I shall report back next year when I get my first MRI after gamma knife results.  xxx

[kssquared]

I am unsure too if I have an AN.  It started when I noticed an echo mainly of high pitched sounds in my left ear. I went to the GP and they treated me for an ear infection. A couple of weeks passed and there was no improvement so they sent me to the emergency ENT at Southampton Hospital.  They treated me with antivirals, steroids, aspirin, and a whole myriad of other drugs. They sent me for a hearing test a few days later which showed a bit of a mixed reading but mainly some loss in low frequency sound. I was referred to the ENT consultant for an appointment about 3 weeks later.  At that visit my hearing was tested again which showed further hearing loss in the low frequency range. My other symptoms had progressed to tinnitus consisting of a continuous tone which varied in volume but never disappeared. I began experiencing what I can assimilate to car sickness or the result of being spun around although the world does not seem to spin.  Headaches, head pressure, sore neck as well as fullness at times in my left ear. They performed an indescope to check my throat which was clear. I was scheduled for the MRI which happened on October 16.  My initial symptoms started mid August.

I asked the member of the team of the consultant that examined me and he thinks it could be Meniere's disease. I guess this is based on the low frequency loss however my symptoms are progressive and not fluctuating apart from the car sickness which is currently at random intervals.  As a result I think an AN is more likely although I am not really in a position to diagnose !

That's the story so far, so not a long journey by comparison to others. 

[RaineyP]

Hi kssquared

Crikey, that is a relatively short time period between the on-set of your symptoms and your MRI scan - which is good for you. I guess it goes to show that it isn't always a long drawn out process.
Your symptoms seem to be slightly different to mine - although, from what I have read there are no 'hard & fast rules' with this type of problem as it can present itself quite differently in different people.

I found it difficult to answer some of the questions asked by the consultant - 'did I have dizzy spells' for example. Like you, the room doesn't spin - but if I bend forward, when I stand back up again I have to hold on to something because suddenly all I can hear is a pounding/whooshing noise in my head and it feels like everything is going 'dark' (if that makes sense) and I am going to pass out. Sometimes I don't even have to bend forward for this to happen (although it doesn't last very long). Also, if I close my eyes when standing up I start to wobble - like being drunk!!

Something else I have noticed recently is that I've got a dull ache behind my right ear - on the bone. It feels like I've had glasses on for too long, or they have been too tight and put pressure on the bone - making it feel bruised.

When I saw the consultant he used a tuning fork to test my hearing and when he pressed the end of the fork to the bone behind my right ear and asked me if I could hear the noise, I said I could - but in the left hand side of my head (which I am not sure he believed as he did it a couple of times and each time was the same!!).

As a matter of interest, when you had your MRI did they use the contrast dye?
Mine was done without - I've noticed that the use/non-use of dyes seems to vary depending on consultant and the area you live in!!

I still haven't heard anything about my scan results and am trying to be patient - but may make a phone call today to see if the consultant has received the report from the radiologist - that would be a start!!

xxx

[RaineyP]

Hi

Just thought I would update you following my telephone conversation with the consultants secretary this afternoon. It appears that a letter was typed up yesterday advising that the MRI scan came back clear!

That is good news, but doesn't answer the question of what is causing the problems I have been experiencing - which are not in my imagination.

I am also reluctant to believe the result as the scan was done without a contrast dye - which, reading the posts on this forum, are what is really needed to identify smaller AN's.
I am not due to be seen again for another 5 months but have asked if that date can be brought forward as I am now experiencing brief dizzy spells.

I am also going to arrange for another MRI scan to be done - this time it will be privately and with the contrast dye. If that comes back clear, then I may believe that the cause is something else.

My husband thinks I am mad for not being pleased at the 'clear' results and that I am looking for something 'bad' to be wrong. I'm not - I just want to know what is causing me to feel the way I do!!

xxx

[Islandgirl]

Hi RaineyP

Just to say I am glad your scan came back clear although I do understand your concerns.  For the record though when I had my first MRI at QA hospital in April 11 the nurse told me it would be a straightforward ten minute scan, there was no mention of any dye.  However I knew/guessed something had been spotted on the scan as after about ten minutes I was rolled out of the scanner and the needle for the dye was inserted and I continued to be scanned for another twenty minutes or so after that.  Apparently the dye just enhances the image.  The point I am making is that an AN unless tiny would still be picked up on the MRI without dye or at least mine was.  Now if you do have a tiny one there and it is picked up on MRI with gadolinium fact is at the tiny stage there is little that would be advised for six or twelve months anyway other than watch and wait.  If you can tolerate the symptoms until your next consultants appointment I would suggest you request another MRI at that point with gadolinium.  It's annoying really as I don't understand the reason for not using the dye in the first place although I believe there is a small chance of adverse kidney function so may'be that's the reason or the cost more likely I suppose as it's NHS.