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

[kssquared]

Thanks for the additional info all, I will go through the posts to which I am sure will provide great insight.

The only update my side is my Neurologist appointment is scheduled for February 19th !! A lot further away than I had hoped.  My symptoms remain unchanged although in the last few days my tinnitus has been ringing noticeably louder.

@RaineyP - How did your consult go toward the end of November ?

[PamJ]

Hi everyone I'd just like to pop in and say when I had my first MRI scan (without dye) within a few days the hospital rang to say I had to go back and have another scan with dye that was in a Kent hospital, after my second scan I was sent me up to the Neurology Hospital in London where it was explained to me I had an AN and was put on wait and watch before having my AN removed two and a half years ago.  I just wanted to say that although I didn't have dye the first time they still found my tumour.

[Derek]

Hi PamJ...

Not sure what size your AN was at diagnosis but very small tumours would probably only become visible when gadolinium contrast dye is introduced during the MRI scanning process particularly so if the tumour is located in such an area that it may not be immediately identifiable without the contrast dye added. That is one of the reasons why MRI scans for a suspected AN are normally undertaken in two phases i.e. firstly without the dye and then secondly with the dye added which will highlight the precise size, location and dimensions if a tumour is present. The procedure also provides essential information relevant to blood flow and condition etc. of the adjacent blood vessels. This process assists the radiographer to be absolutely specific on the diagnosis when compiling the subsequent report.

Regards

Derek

[PamJ]

Hi Derek thanks for that I find it all so complicated how different things work, when mine was first found it was only 3mm that's why I was wait and watch for nearly 3 years then ended up having it removed.  Thanks for explaining about the dye I couldn't understand why some had it and some didn't, I know when I had the last dye I had to have blood tests beforehand.

[Derek]

Hi again PamJ...

Re the query you raised regarding the testing of a blood sample prior to the MRI procedure. You will be aware that in the UK the usual pre MRI procedure is to complete a questionnaire form whereby you provide antecedence relevant to your past and present health situation etc. Certain health problems, such as that involving the kidneys, may require a blood test to establish whether the existing condition renders it safe to intravenously introduce the gadolinium contrast dye as there may be a danger of damaging the kidneys when the dye passes through them. Some hospitals will require the test irrespective of what is declared on the questionnaire to maximise protection of the patient and to counter any possible future negligence claim against the relevant hospital authority.

Regards

Derek

[PamJ]

Thanks for your reply Derek.  In the lead up to having my AN removed I didn't know this site or any AN site existed so I was completely ignorant as to what was going on, I never asked any questions because I was so scared I didn't want to know and just wanted to get it over with.  Since having the op and finding this site I find it so interesting.  Thank you again.

[Islandgirl]

Hi Derek

Re your statement about MRI procedure you mentioned that MRI provides essential information relevant to blood flow and condition etc. of the adjacent blood vessels.

I know very little about such things but is that really the case ?. I always thought you would have to have an MRA to see blood vessel condition etc.  I have always wondered about this and whether the MRI we have for AN would pick up such things as aneurysms or mini strokes or MS for example.

[Derek]

'Islandgirl'

Hi Christine...

The MRI images with the gadolinium contrast dye added may provide an indication of any possible problems existing with the blood vessels etc. Should this be the case then the patient would be referred for further investigation via a Magnetic Resonance Angiograph (MRA) procedure just as you have stated.

One of the positive aspects of having an annual MRI scan, in addition to monitoring the AN condition, is that it should also indicate whether any non-AN related health issues are possibly mustering which, should that be the case, can then be addressed at an early stage via the patient being referred for further specialised investigation.

At my stage of life (fast approaching 70) I actually treat the annual MRI procedure as a health check in much the same way as a visit to the optician or dentist etc. and the fact that it is also cost free via the NHS is an added bonus 

Regards

Derek 

[Alison]

Hi everyone,

Just to add my bit about MRI and dye in the UK.

My first MRI that picked up the AN was without contrast and measured the AN at 14 x 10 x 8mm. This was at a private hospital on the NHS where my GP decided to send me to see the ENT guy as the local NHS hospitals waiting list was too long. This was the MRI the neurologist and the oncology doc at another hospital, used to discuss size and treatment. They measured it at 15 mm.

The second MRI that was to be used to plan the SRS was a week before treatment and the oncology doc said contrast would help with exact planning for treatment. This was at a different NHS hospital where the neurosurgeon was based.

My MRI at 4 months to check for hydrocephalus and swelling, was without contrast at a third hospital, my local NHS hospital.

My MRI year post treatment is going to be in Jan at the same local NHS hospital. This was ordered by the oncology doc who treated me at the oncology centre who said they didn't need contrast for that one.

Are you all keeping up! My question is, who is right? Seeing as contrast can result in some nasty kidney problems, albeit rarely, I'm a bit loathed to have it. I had to ask for a blood test beforehand for kidney function at my GPs as I wasn't offered one at the hospital. As I have Gilberts syndrome, a raised bilirubin count in the liver, I thought the hospitals would have insisted on a blood test for kidney function beforehand but they didn't. I felt nauseous for a few days after the contrast and arm a bit sore and I learnt on here to drink lots of water afterwards to try and flush it out, again the hospital didn't tell me about that.

So to contrast or not to contrast that is the question. Should I be having contrast to better see whats afoot with my AN post treatment? I  have lots of worsening symptoms especially this past month, worse imbalance, full ear, tinnitus and intermittent facial twitching. I guess if they need to know more after a non contrast MRI they can always order another one with the dye and a blood test before if necessary? Bit concerned now as Derek says they can see the blood vessels better with the dye. But then really not keen on gadolinium!

Alison x





 

[Derek]

Hi Alison...

Whilst I am not medically qualified my understanding of gadolinium contrast dye is that it is absolutely safe when used on patients who do not have a major health problem with their kidneys. When such renal problems are known, especially severe kidney failure (renal insufficiency) the use of gadolinium may increase the risk of developing a rare but serious disease called Nephrogenic Systemic Fibrosis which causes a thickening of the skin, organs and other tissues for which there is no effective treatment. That is the main reason why blood test screening is often carried out prior to the use of gadolinium.

To sum up then, if a patient does not have such a pre existing kidney condition the use of gadolinium is perfectly safe. It does not cause problems in healthy kidneys and is instrumental in identifying the dimensions, consistensy and location of the acoustic neuroma whilst providing an initial indication of the blood flow in the surrounding vessels.

Regards

Derek

[Nuttyneddy]

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.

Hi Derek

I would be particularly interested to know how to go about doing this please.  Can I do it in advance of having the scan so that they let me have it soon afterwards?  Or do I have to wait until they have some records about me before I can request to see them?  Or shall I just chase the results after a week or so (assuming I've not heard anything) and let the doctor do it?  I'm guessing it will be him that I go back to for the results as he was the one who referred me and he is pretty good I think at progressing things rather than fobbing me off.

Thanks

Fiona

[Alison]

Hi again nn/fiona

The doc who ordered the MRI gets the results on the system immediately although the report from the radiographer can take up to two weeks. If its your GP who ordered it then you can contact them and ask for the results. I was ref to ENT who ordered the MRI but after a week of waiting I rang him to be told it was an AN. Others had been kept waiting ages thinking no news was good news but it wasn't! So if your GP has ordered it you will prob get results quicker than by a hospital dept, such as ENT.

If you want a copy of the MRI ask for the form from the hospital where you have the MRI from the medical records dept. They ask for a cheque for 10-20 pounds depending which trust, then they will send you a CD copy. Some MRIs are readable but some are not. I had one CD that wasn't clear and one that was, both without contrast. Fun looking at your own brain though! Hopefully your scan will be clear.

Alison x

[Nuttyneddy]

Thanks Alison, I might do that then.  It might be useful to be able to prove that I do actually have a brain 

[Derek]

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.

Hi Derek

I would be particularly interested to know how to go about doing this please.  Can I do it in advance of having the scan so that they let me have it soon afterwards?  Or do I have to wait until they have some records about me before I can request to see them?  Or shall I just chase the results after a week or so (assuming I've not heard anything) and let the doctor do it?  I'm guessing it will be him that I go back to for the results as he was the one who referred me and he is pretty good I think at progressing things rather than fobbing me off.

Thanks

Fiona

Hi Fiona...

You may only request copies of the CD images and corresponding neuroradiology report after the MRI scan has been completed. You must initially complete an application form once the MRI scan has taken place which is obtained via a telephone request from the Records Office of the relevant hospital where the scan was undertaken. Allow three weeks between the date of the scan and requesting the copies. I usually telephone the relevant consultant's secretary a couple of weeks or so after receiving the copies and request an appointment otherwise it could be several weeks or even months before you get an appointment if you leave it to them!

Regards

Derek

[Nuttyneddy]

Thank you, I won't worry about it for the minute then.  I don't have a consultant, it's my GP who ordered the scan so fingers crossed that'll make it a bit quicker getting the results - especially since I'll be continuing to bug him if the scan is clear!