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

[kssquared]

Hi RaineyP

Great news that the scan was clear.  As with Islandgirl, I completely understand your concerns.  I also had the MRI without contrast.  Unfortunately I only found this forum after I had been referred for the scan by the consultant but before the scan took place.  I contacted the ENT secretary before the scan date to ask if I should not be having the contrast with the scan and was told that it was not necessary.  I am of the opinion if the MRI results will be used to absolutely rule out possible causes then surely it should be as accurate as possible ?

The fact it has come back clear for you is great, but is the consultant not looking into further possible causes ?  Waiting 5 months before another consult seems rather concerning seeing as they have yet to reach a diagnosis for you.............

[kssquared]

So an update from my scan :

I called the ENT secretary today and she confirmed they had my results from the MRI department.  After running them by the consultant she gave me a call back, and said that the MRI was not normal and moved my follow up appointment from early December to 7th November.  I asked if she could shed some light on what the results of the test were however she said she was not a doctor, and could only pass on what she had been told by the consultant.  She said it wasn't anything urgent and that it wasn't a large mass in my brain.  I tried to get more but with no joy.  I did ask specifically if it was an AN but she skimmed around it.

So its now a waiting game for 2 weeks to see what they have found.  It could be an AN, which has been my thought all along, but I am now wondering what else would show up on an MRI scan ??

[RaineyP]

Hi kssqaured

Am glad that you got an answer about your scan, although it is only a partial answer.
I know that it's easy for me to say, but try not to let your imagination run away - if it was anything 'serious' they would have arranged to seen you before 7th November.

I think it is very easy for a consultant to say your scan results are 'not normal' and not think of the impact it is going to have on you. They may be dealing with things like this on a regular basis - but you aren't!

It may be worth calling them back and asking for your consultant to phone you for a quick chat - to help put your mind at rest.

I wish that there was something I could say that would help make those two weeks pass by quicker - but I will be thinking of you.

A quick update on my life: after speaking with my consultants secretary and explaining that we were going to pay for private scans (with dye) to see if there was anything that perhaps was missed off the scans taken last month, she suggested waiting until I had seen him again. That wasn't going to be for another 6 months and I wasn't going to wait that long as I need to find out what is causing the problems I am experiencing, which are affecting me on a daily basis (including my work). So, I have managed to get an appointment to see my consultant again on 24th November (based on the fact that my daily life is now affected!)
Once we've seen him (4 weeks today) we will decide whether to go ahead with the private scans.

I really do hope that the next couple of weeks fly by for you.

Take care & do keep us updated.
xx

[kssquared]

Hi RaineyP,

It's great you have been able to pull your appointment forward. You mentioned that the symptoms are affecting your daily life. Are they still getting worse ? Hopefully you will get enough from your appointment to make a call about the private scans and get some direction on the cause.

I have decided not to call the consultant as I have not met him before so am playing the waiting game instead !!  I have been trying to figure out what else apart from an AN could possibly be seen from the MRI. I know I shouldn't but I can't stop myself. To be honest I haven't really come to any other possible conclusion yet.  I guess we will know in 8 days time.

[RaineyP]

Hi kssquared

I can't imagine how you must be feeling at the moment - just counting down the days I guess.
I think it is only natural that you are wondering what has shown up on the scan. I was doing that before being told the results   
I have just received a letter telling me that the scan results were normal (it didn't mention whether they had actually found any evidence of a brain though )

I believe that the problems are getting worse - and it is having an impact on my work.
Part of my job is to visit schools, etc. and carry out inspections/audits and the problem I am finding now is that I can't write notes and listen to what is being said at the same time. It's a bit embarrassing asking a question and then waiting for the answer before writing it down and then having to repeat part of the question - because I've forgotten half of what they said by that point 

I really hope that the next week goes quickly for you - I shall be thinking of you

Take care

[kssquared]

So an update from my visit on Thursday. The consultant says there is no sign of an AN. However the scan did show more "white spots" than expected from someone my age. As a result he has referred me to a neurologist although there may be no link from those spots to my hearing and dizziness.  Another waiting game to see when my appointment will be scheduled.

I am not sure if this is good news or not to be honest. I also am aware that I did not have any contrast during my scan so I am not sure I can absolutely rule out an AN yet. My symptoms remain as before with no obvious change for the better or worse........

[RaineyP]

Hi kssquared

It's good that your appointment with the consultant has (finally) taken place - but fully appreciate how you are feeling. In some ways, it is worse when you get told that there is no AN showing on your scan - because then you are back in that 'limbo' of not knowing what is wrong.

I was diagnosed with cervical cancer when I was 30 years old and have to say that I actually felt calmer once I had been told what was wrong - because I knew then what I was facing (and reality is no where near as bad as your imagination!).
I am seeing my consultant on 22nd November but am not holding out much hope of what the next step will be - as he was quite happy to not see me for another 6 months

I hope you don't have to wait for your neurology appointment and an answer to what is causing your problems.

Have got to ask, what is the 'normal amount' of white spots? And how many are you supposed to have for your age?

Take care
xx

[Islandgirl]

Sorry to hear about the rather vague result to your MRI kssquared.  Unfortunately it's not very helpful telling you that without more info.  At least Neurology will have a better idea of what they are looking at which is obviously why you are being referred.  There are many possible causes of the white spots of course but all you want to know is if any of these are causing your symtoms or if it is something else.  I think you will have to have a further MRI with gadolinium or an MRA even to diagnose what is going on.  I hope you don't have to wait too long for your next appointment as I have had to in the past although in my experience as long as they don't see anything too worrying on your MRI it's likely to be some time.  I wish you well with that.

[Karenk]

I know how you feel! My without contrast mri was negative, but I'm still worried about it. I'm in N Ireland & had it done privately. I got the CD (6 weeks later) & had a look myself, but I couldn't tell one way or another. It seemed a bit blurry & not terribly high quality. I'm claustrophobic though; don't think I was a great patient!

[Derek]

Hi there...

I have been in the conservative management (W & W) treatment mode since diagnosis almost 12 years ago and tend to spend most of my Forum time on the 'Watch & Wait' sub forum. I was delighted to note in this thread, the presence of fellow UK members and just thought I would mention that many of my 400+ posts contain much information relevant to my experiences within the UK NHS system relative to matters concerning the management of my acoustic neuroma.

You may find it of particular interest with regard to the obtaining of early results of MRI scans etc. that in accordance with the provisions contained within the Data Protection Act 1998 and the Access to Health Records Act 1990, you can make application to the Hospital Trust holding your health records and upon completion of a simple form and payment of about £10, upon request a CD copy of your MRI scan and a copy of the neuroradiology report will be posted to you. You only complete the application form once then thereafter you merely telephone the relevant hospital records office and request your copies which are sent direct to you by post within a few days. They will then invoice you accordingly. I have used this system successfully for the past 5 years and it puts you in the unique situation of often being in possession of the MRI scan results before they have been forwarded to your consultant! The big 'plus' factor with this system is that if the neuroradiology report indicates something adverse, you can immediately contact the consultant for an early appointment rather than having to wait months which is unfortunately typical of the current UK NHS admin system.

Oh and by the way within the NHS system...you do not always get an early notification from the consultant if the MRI scan result indicates that there is  a problem. When I was originally diagnosed in 2002 I didn't get the results of my scan for two months even though the images indicated that I had a 2.5cm AN! It came as quite a shock as I had convinced myself that 'no news was good news'.

If I can be of any further assistance to our UK forum members then please feel free to ask.

Regards

Derek

[Islandgirl]

Thanks Derek for this useful information.  I may well use this system.  Although I have now had gamma knife in Sheffield in January this year and my forthcoming Mri follow up is end of January 2014 I am also in a perpetual state of watching and waiting, the waiting bit being the endless weeks or months before I get NHS appointments to find out the results.     

[Alison]

http://www.anausa.org/smf/index.php?topic=17755.0

Above link to my thread/posts about UK experience.

Hi islandgirl, I'll email you!

Hi, I'm in the UK but mainly hang out in the radiosurgery part of this forum, or a UK based one, so only just noticed this thread. I have been posting for around 18 months and have detailed my UK experience from MRI to treatment and then my post treatment trials! The above link is the thread "treatment in the uk" which I started to help other UK based AN sufferers, as our experience can be different on the NHS to the USA. I also detailed my diagnosis story in my thread "just diagnosed " which you can link to through the above link. This gives my experiences of timescales when waiting for results etc. From what I hear from others in the UK its usually a case of having to chase up appointments/results etc. I am currently awaiting an apt supposedly in Jan for my post SRS MRI. Post treatment I have had a  worsening of pre treatment symptoms mostly imbalance, dizziness, tinnitus and hearing loss. I had linac SRS in Dec 12. Hope that helps fellow uk sufferers!

Alison

[Derek]

Thanks Derek for this useful information.  I may well use this system.  Although I have now had gamma knife in Sheffield in January this year and my forthcoming Mri follow up is end of January 2014 I am also in a perpetual state of watching and waiting, the waiting bit being the endless weeks or months before I get NHS appointments to find out the results.   

Islandgirl..

Coincidentally my conservative management treatment mode is under the supervision of Mr Jeremy Rowe at Sheffield...a real gent and a man whose judgement I trust implicitly.

Regards

Derek

[Islandgirl]

Derek I don't know if you have read any of my few previous posts but I must say that my treatment and the way they operate at Sheffield Gamma Knife unit is first class, everything about it was a like a breath of fresh air.  I wished last January when I was there that I lived nearer.  I saw two consultants there Mr Kemeny and a Mr Yianni.  There are at least seven  people in the unit where you get treated, all the neuro people imaginable.  You do get looked after there, totally efficient and they are a huge credit to the NHS in my view.  Unfortunately my comments about "waiting" refer to my local hospitals here on the South coast where I have my MRI's and see a consultant if I am lucky.  I have read your posts from time to time about the progress you have made.  I hope it remains that way for you for many years to come but at least you are in good hands with the Sheffield team.

[Derek]

Islandgirl...

I have just read over your posts Christine and it is good to note your praise of the treatment you received at Sheffield. I am in total agreement with your endorsements. I reside in the Newcastle upon Tyne area and my annual MRI scans are carried out there then the results forwarded to Sheffield. The NHS administration at Newcastle is not the best hence my use of the various aspects of legislation to obtain my scan results ASAP....worth every penny of the 'tenner' as the rapid return eases the stress of waiting for the result....and acoustic neuromas just love stress!

Best wishes for a good result from your forthcoming MRI scan.

Regards

Derek