ANA Discussion Forum
General Category => Inquiries => Topic started by: RaineyP on October 12, 2013, 06:14:30 am
-
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
-
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.
-
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
-
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.
-
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
-
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.
-
@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 ?
-
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.
-
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
-
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
-
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
-
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.
-
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
-
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
-
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.
-
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.............
-
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 ??
-
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
-
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.
-
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
-
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........
-
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
-
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.
-
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!
-
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
-
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.
-
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
-
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
-
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.
-
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
-
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 ?
-
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.
-
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
-
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.
-
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
-
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.
-
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.
-
'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
-
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
-
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
-
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 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
-
Thanks Alison, I might do that then. It might be useful to be able to prove that I do actually have a brain ;D
-
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
-
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!
-
Fiona...Unless I have missed some info from one of your earlier posts, NHS patients in the UK attending their GP surgery with a medical problem are usually referred by the GP to a hospital department catering for the relevant symptoms for investigation. A consultant is ultimately appointed to oversee the patient and it is the consultant who actually refers the patient for further investigation / tests including an MRI scan etc ???
-
When I first had problems my GP referred me to ENT who did a hearing test. ENT said MRI because of sensorineural hearing loss and after that when my AN was discovered my results were forwarded to consultant neurologist at Southampton. I didn't come across a consultant until the later stage and wasn't aware I had one until then. This is the trouble it's all so bitty in the UK with no one knowing what's going on half the time, which consultant you are under and even which hospital sometimes. You end up with a consultant one way or the other.
-
In my case the GP referred me to the hospital for an MRI and to the ENT department because he thought my problems were "something to do with the nerve". He said at the time that he wasn't sure which appointment would come through first. I don't know how it's usually done, because this is the first time anything like this has happened to me ???
-
Hi again Fiona/nn
As Islandgirl says, it follows no pattern! I also was referred to ENT via my GP who ordered first scan. ENT referred me to neurosurgeon who sent me to oncology for radiosurgery. I'm now waiting to see the neurosurgeon for follow up.
I never saw ENT again, but others I know are still under ENT after radiosurgery! Hopefully in your case it'll be something other than an AN .
Re the MRI CD copy palaver. Derek has a different experience again. Having been through the long wait before I took the form with ID and cheque in on the day of the scan, having got my form beforehand from the medical records dept after ringing them. I got the CD 3 days later in the post! Very quick. I had to get the radiologists report from my GP though, a week later.
As I said before your GP will have it on the system shortly after it is done and when he gets the radiologists report you'll know the outcome too. I know this because I asked at my recent scan in Jan and was told the GP will be able to access it immediately as its on the same system. So the GP ordering it should get you a quicker response than the labyrinthine hospital referral for MRI!
When I previously had an MRI at a different hospital trust to my local hospital (the oncology hospital) my GP couldn't access it.
Complicated or what!
Alison x