ANA Discussion Forum
General Category => Inquiries => Topic started by: jacey on November 08, 2006, 03:28:40 am
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Hi there,
im from England, i have not had AN diagnosed as yet.
At least two years ago i noticed reduced hearing in my right ear, but ignored it, thinking it was the phone that was the problem! I say to people "oh hold on just need to change ears", meaning putting the phone to my left ear. I was on the phone a lot one day and my left ear was becoming tired of listening, but i couldnt hear out of the right, hmmm, decided may be i ought to mention it to my GP.
He said i had fluid in the middle ear and decided to send me to a ENT specialist, but in the mean time i moved address so decided to waitto see the ENT until i moved to the new place. Up until moving i hadnt had any other symptoms apart from a nerve twitch just above my eye brow, but had not conncected the two symtoms together, why would I?
A couple of weeks after my move i started to get severe ear ache in the right ear and pain on the right side of my head. I thought i had shingles and waited for spots to appear but none did. The pain persisted on and off and my head felt strange. Decided i ought to register with a new GP and get the specialist appointment sorted.
An appointment with the NHS it was a 2 month wait, so i decided to see the specialist privately, but could only afford the consultation. He told me he didnt think it was anything serious but because he couldnt see into the inner ear he wanted me to have a MRI, unfortunatley i will have to wait 3 to 4 months for that. Its the not knowing that is hard, if you know what you are dealing with maybe it makes it easier, or maybe not? He said i didnt have any fluid in the middle ear.
Well the symptoms are still on going, feeling of fullness in the ear, tinnitus, not always sure where noises are coming from, lightheadedness, like im on a boat, pain in the ear, tho not constant like before, nerve sensation down the side of the temple area, like a hair being there or someone running their finger along that area.
So thats me, my partner thinks i have to be realistic that i might have a AN, my GP did say that the MRI is to rule out something that is causing the deafness, but of course didnt say what. So then you have to look these things up on the web dont you, sometimes i say to myself, right im going to ignore the symptoms and get on with stuff, its all in my head, exscuse the pun! But you cant help but feel you are going a bit crazy can you. I hadnt been to the GP since 98 until this, so im no hypochondriac!
Ah well. Thanks for listening. Your site is really great. So helpful and friendly. Thank you.
best wishes to you all
Jacey
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Hi there Jacey...
I'm also resident in the UK and consider myself fortunate to have found this terrific website where you will get loads of advice from compassionate and friendly folks who know what they are talking about. You will note my AN history from my signature so no need to go into that. Your symptoms certainly are consistent with an acoustic neuroma condition but of course there could also be many other reasons. The only definitive method of establishing the causation is via an MRI scan with infusion of contrast dye which has the effect of instantly identifying any presence of a tumour. If you can afford the cost of the MRI scan privately (currently £350 at the Nuiffield Hospital at Newcastle upon Tyne) then have it done ASAP. Please be aware that if an acoustic neuroma is diagnosed don't panic.They are usually very slow growing and are treatable. Depending upon the size, you will have treatment options available re 'wait and watch', microsurgery or radiosurgery. But you MUST have that MRI with contrast in the first instance and ASAP!
Best of luck and keep us posted.
Regards
Derek
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Jacey,
If this doesn't get you going, nothing will........hurry for that MRI with contrast. This is why....you could get to the point if it being a Acoustic Neuroma where you would only have one choice, THE MAJOR SURGERY. I have a choice but, it is close. They miss-diagnosed me for many years and I didn't get referred for an MRI. Now my tumor is so large that I'm very close to having no choice but, the traditional surgery. I still have a choice but, borderline. My Cyberknife appointments are right after Thanksgiving. I'm holding my breath as, I want nothing to get in the way and to get these appointments over with. True, AN's are slow growing but, one doesn't always have time on their side.
Keep us posted and I wish you my very best from the heart..........
Palace
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Hi, Thank you so much for your replies, its comforting that there is someone out there knowing what you are going through.
i know i need to get the MRI asap, im going to phone my GP practice to see how much it will cost me privately. I have heard nothing as yet for a NHS date for the MRI.
I had a bad night last night, the noise in my head woke me up, then i had horrible off balance feeling just lying there, couldnt sleep for what seemed like forever, considering this i havent had too bad a day today!
Tell me Derek, you mention about the contrast with the MRI, dont they do this automatically? Is this the dye that they put into your blood stream, is that what you mean?
I live in Lancaster btw, so not too far from you, even tho i am a Southerner and have only lived up North for a short time. I love being nearer to the Lake District, even tho i find strenuous exercise not all that great at the moment, it seems to make the symptoms worse, particulary the tinnitus, but I hope i can cope with that if its a permanent thing, I just want to know what im dealing with. Thanks again, any info greatly received.
Best wishes
Jacey
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Hi Jacey,
I am glad you are getting the MRI. Something isn't right and you need to find out what it is. I can identify with most everything you have. I too have felt like there was a hair tickling my face and I've brushed it away a hundred times!!
If you need further support, advice, or just a place to vent....just come on back, now, ya hear?? ;)
Sue in Vancouver USA
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Hi again Jacey...
Regarding your query re the MRI with contrast... the dye is in fact gadolinium which is administered intravenously at the half way stage of the MRI scanning process and has the ultimate effect of identifying any tumour that might be present as a vivid white mass on the scanned image whereas adjacent healthy tissues are not affected by the gadolinium. Whilst an MRI or CT scan without gadolinium may still be able to identify an acoustic neuroma, it is accepted that the use of the dye will greatly assist in defining the precise size and location of a tumour.
Albeit you might expect that the radiographer would automatically administer the gadolinium, unfortunately this is not always the case and it would appear that the decision is left to the individual radiographer who may not be aware that an acoustic neuroma is specifically suspected.
It is therefore absolutely essential that you personally ensure and insist prior to the commencement of the MRI scan that the radiographer will be carrying out the gadolinium process.
You are certainly fortunate in residing close to the Lake District area. We love that area and are in the process of acquiring a holiday home at Pooley Bridge which is less than 2 hours drive from our home at Tynemouth on the north east coast. I also enjoy walking and have endeavoured to keep myself fit since diagnosis of my AN almost 5 years ago. I do a brisk daily 4 miles walk along the seafront as well as doing a vigorous daily 1 hour physical work-out in my local gym. I find that this has worked well for me in that I now have absolutely no balance or fatigue problems which has enabled me to maintain my passion for motorcycling.
If I can be of assistance at any time please do not hesitate to e-mail me at derekstorey9955@aol.com
Best Regards
Derek
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Hi Jacey and welcome.
I'm only Brit-by-association as my husband is from England, with family in Shaftesbury-Dorset.... I travel there frequently on business and pleasure.
Everyone here has given you terrific thoughts... and having the MRI with contrast (you can do without contrast, but if anything is there, the constrast will really help it show up better on the films) will be key.
Should it be an AN, there are plenty of treatment options in the UK.... Tony (here on the site) is also very knowledgable and can also help guide you just as Derek has. I'll watch this thread in hopes of updates and wishing you well in the interim.
Hang in there.. and have some Jaffa Cakes and PG Tips for me!
Phyl
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Hi everyone
Just to let you know that i have my MRI on the 11th Dec, not too long to wait now. At times it feels like forever, but maybe it will go quick now. Im scared they will find a AN or something similar and also scared they will find nothing, because if they find nothing, whats causing all these horrible symptoms. The fullness in the ear is particulary bad at the moment, trying to keep calm and positive! I dont suppose i will get the results straight away, before Christmas, knowing the NHS i doubt it!ÂÂ
Thank you for the support, it really does help, my partner is great, but i hate burdening him with the way im feeling, I want to talk to him about it, but i dont, sometimes i have no choice when im feeling really bad, but i try to keep it to myself, so this site is like a godsend to me. Thank you.
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Hi again Jacey...
Very best of luck with your MRI scan and be sure you check that they will be adding the contrast dye.
I share your thoughts re not wanting to burden your partner but I'm sure he would understand what you are going through if you were to show him the various posts on this site. Meanwhile, stay positive and remember that we are all readily available to help you through this anxious time.
Best Regards
Derek
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Hi Derek
Thanks for the reply. Im staying positive! Honest!! I worry about the contrast thing a bit, what if the person doing it insists i dont need it, do i make a fuss? I dont make a fuss normally, but if i have to i will. i have been thinking about the MRI, i have heard they are not overly pleasant, i dont mind the being in a small place, but the noise is the thing thats on my mind, i think even with ear plugs its going to be very uncomfortable. How long does it normally take to do?
Another question, has anyone noticed that they have a cold tongue? I havent noticed it myself, but my partner said to me yesterday, that my tongue felt really cold, and he had noticed it a few times. We did not elaborate on what or why it was like it, but it did seem an odd thing to notice, its never happened in the past. Do you think its another symptom of AN?
Thank you for your replies, they appreciated, very much.
Best wishes
Jacey
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Hi there Jacey...
You MUST insist prior to the MRI scan that contrast dye be added as it clearly identifies the smallest AN as a white mass. If you need to make a fuss then do so...we are talking about your personal health and welfare here and there is nothing more important than that. The contrast dye is usually introduced via IV mid way through the scan and the whole process from start to finish should last no more than between 30 and 40 minutes.
Whilst the process can be a tad claustrophobic re being in an enclosed 'tube' with the roof virtually upon your face, it is really a doddle. You will be given ear-plugs to lessen the clanking and banging noises and you will have a hand held buzzer which you can activate at any time if you have any distress. The operator will also be in verbal contact with you and will occasionally ask that you are ok. Take my tip and keep your eyes closed throughout the procedure and you will find it a lot easier.
Very best of luck and let us know how it all went when you get your results.
Regards
Derek
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I actually did fall asleep during my MRI. He came in and woke me up saying that my "rapid eye movement" was causing problems. I had gotten up about 4:00am (after going to bed at midnight) that morning so as to get some work finished before my 3:30pm appointment. The hum (and clacking) of the machine along with the music (classical jazz) just put me out like a light. After he woke me up, he'd get oin the speaker every so often and say something, just to make sure I didn't doze off again.
:D
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Hi Jacey,
Good luck with the MRI scan. I've had three NHS MRI scans now, two at Hexham and one at North Tyneside. I didn't have the dye for any of mine and they seemed to find my AN alright so, if they don't want to use the dye, then I wouldn't worry too much about it! I went to talk to the staff in the control room after my last scan and asked to see the pictures and you could see the AN really clearly. (Mine is currently about 15mm). I would guess that as this is your first scan, the MRI staff won't tell you anything and will just tell you that the consultant will be in touch.
I had another appointment with the ENT consultant at Hexham yesterday and he and the MRI consultant are of the opinion that my AN is growing, albeit very slowly. Can I ask how old you are, as this may affect your treatment decision. I am 44 and my consultant and I were of the view that I would have to do something at some point as I hopefully have another 50 years to live with the thing! I haven't made my final decision yet but I am almost certainly going to opt for the GK treatment at Sheffield. My consultant thinks that there is a waiting list of about 3-4 months at the moment, once he refers me.
Don't worry about the scan. I found the process fascinating and they played Radio 2 (Steve Wright in the afternoon!) to me whilst I had the scan. No cup of tea, though!
Good Luck and let us know what happens.
Andrew
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Hi Andrew...
Not sure if we have had a previous 'cyber' conversation on this site or on the BANA site?
I reside in the North Tyneside area of the UK and all of my MRI scans have been carried out at the Nuffield Hospital in Newcastle and all have had the contrast dye introduced.
I have private medical insurance hence my scans being undertaken at the Nuffield. In my discussions with the technicians they always advise that contrast dye be added particularly in furtherance of attempting to identify the presence of a suspected acoustic neuroma which can of course be very small at diagnosis.
I have not yet heard of anyone else on this site who advocates having an MRI scan without contrast dye, in fact the contrary appears to be the norm. If you have never had the contrast dye added in any of your MRI scans, you may not be aware that the dye must be administered via the IV method and is of course time consuming. I am not being critical of the UK National Health Service (NHS) but we know that they always seem to be under pressure and short staffed. I am a little suspicious that it may just be a tad convenient to carry out the MRI scan without contrast in furtherance of saving valuable time and resources.
Best of luck with your ultimate future treatment choice.
Regards
Derek
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Hi Andrew
Thanks for the reply. I will ask questions when i get there, I obviously i cant make them give me the contrast, but if they say they are not i will give it my best shot in getting them to change their mind. Nicely of course. How long did you have to wait for the results the first time, the ENT consultant told me he would send me a follow up appointment after the MRI. Im 45 by the way. When the consultant asked me my age i told him 46, he thought that was really funny, said im the first woman who he has known to increase her age!
I have been suffering a lot with the ear pain the past couple of days, i wish the MRI was going to be the cure! I keep debating whether to go back to the my GP, but cant think what he could do to help. Reading the site, it doesnt seem if there is an answer to solving the pain other than normal pain killers and trying to be positive!
My MRI appointment is at 1.30pm or there abouts, so you never know, i might get to listen to Steve Wright in the afternoon! Some of the factoids are really interesting!
I will of course let you know what happens.,
Thank you for the good luck wishes.
JaceyÂÂ
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Hi Jacey,
From what I can remember, I think that it was about 6 weeks between having the scan and getting to see the consultant but I would imagine that this varies according to local waiting lists. It didn't matter much to me as I had no pain and I expected the scan to be completely clear. If you are in a lot of pain, then get on to them and see if they can squeeze you in earlier.
As far as the entertainment goes, it went downhill after the first scan. At the second one they put the headphones on but the radio didn't work and at the third one they just gave me a pair of earplugs!
Good Luck!
Andrew
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Hi Andrew
six weeks!! thats ages! you had to wait all that time to find out what was wrong with you?  :o what symptoms were you having prior to diagnosis, what made you go to the Drs? How long have you had the AN for? Hope you dont mind me asking?
If my appointment isnt for 6 weeks that isnt till the end of January, sounds quite likely being the time of year. You are right, if i wasnt in pain i would quite happily wait, i had hearing loss for at least a year and a half before i mentioned it to my Dr, and that was only because i was seeing him about something else. All the other symptoms have only occurred the past 3 months, apart from one, which was a twitchy eye, not constant, so i ignored that too. The past few days i have been feeling sorry for myself, it will pass, i always bounce back, probably hormones!
I know theres lots of people far worse off than me but sometimes you just cant help yourself can you. Are you on a wait and see?
Oh well, i think i will go and immerse myself in Christmas cooking!!
Jacey ÂÂ
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Hi Jacey,
My symptoms started very gradually in that I noticed that I was slowly losing my hearing of higher frequencies on my left side. For example, if I was lying in bed on a summer's morning, then I would notice that I couldn't hear the birds if my right ear was on the pillow. My Dad is pretty deaf and my hearing loss was a very gradual thing (over a couple of years) so I put it down to early onset of old age! Other than the slight hearing loss I had no symptoms until I went totally deaf in my left ear one day (April 2005). The hearing came back the next day but I thought that I ought to get it checked out. My GP couldn't find anything obvious so he referred me to the ENT clinic at Hexham (July 2005). They gave me a hearing test and told me that it was probably the result of an infection but they also decided to give me an MRI to check for one very, very unlikely thing. I had the MRI in August 2005 and saw the consultant in September 2005 and got a big shock. I had always thought that I was immortal so it comes as a bit of a shock to find out that things can go wrong with you. The wait to see the consultant didn't bother me as I was convinced that the scan would not have found anything. ::)
I had further scans in December 2005 and September this year. I saw the consultant again on Monday and he and the MRI consultant are of the view that my AN is growing slowly. We both thought that I had quite a few years left in me, though, so he thinks that I will, at some point, have to do something. My symptoms are just the same. I have had a couple of hearing tests since the original one last August and the results are very similar to the first one.
I am fortunate in that the size of my AN (currently about 15 mm) means that I have choices. From all the reading that I have done, I have come to the conclusion that any advantages of surgery (e.g. physical removal of the tumour from the head) are more than outweighed by the greatly increased risks that such a major operation involves. I know that many people come through it fine but, as far as I can see, I can get the same medical effect, i.e. stop the thing growing, with GK treatment so if I decide to do anything, then I will go down the GK route.
At the moment, I am deciding whether to sit on it (so to speak) for another year, or whether to have the GK treatment in the first half of next year. I am pretty relaxed about it now. At first it was quite a shock but I pretty soon realised that it was actually very unlikely to kill me, or even to have a major impact on my life. I'll let you know what I decide.  :)
Good Luck with your scan.
Andrew
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Hi
Just wanted to let you know how my scan went yesterday. It was in a portable MRI unit, i didnt have the contrast with my scan, I asked, but was told they didnt have the facility to do it in the portable scanner, and looking round I think that was definetly the case. It felt like being in a cattle market, get you on there quick, and get off and get out so the next one get get started! I was in there about 10 mins. I asked if they could tell me anything, but I knew they wouldnt, apparently the results will be in a weeks time, but i have to wait until I see the specialist which i was told would be about six weeks time! So thats about it, they had radio one on the head phones, and asked if i would like to listen to something else, but they couldnt find radio 2 so just turned it off completely. I thought the little mirror was good, so you can see down the room, much nicer than looking at the ceiling! I am so scared they wont find anything, I know something is very wrong, i suppose worrying about what hasnt occurred yet wont help, but the frustration of it all is immense. :'(
I just hope they find whatever is causing me all my ear problems. Thanks for being here.
Best wishes
Jacey
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Hi Jacey,
I can understand frustration - I just typed a reply and then the thing crashed when I posted it. >:(
What I was going to say though, was that whilst the delay is a pain, the good thing is that the scan is a major step forward to finding out what is wrong and the first step towards fixing it. Keep your chin up. With Christmas coming, the weeks should fly by.
Good Luck
Andrew
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Hi there Jacey...
I am pleased that your initial MRI scan was not too bad an experience for you albeit under 10 minutes in a portable unit without contrast is not ideal and your version of events tends to mirror what can happen when you get onto the NHS 'production line'. I appreciate that you did not have any choice in the matter but if you are not 100% happy with your ultimate scan result, you could request a further scan privately which would cost in the region of £350.
Anyway, just offering my 'two pennyworth' for what its worth and hope that your results are OK. Meanwhile put all thoughts of acoustic neuromas and such like nasties aside over the next couple of weeks and have yourself and your family a great Christmas.
Best Regards
Derek
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Hi Derek
Thank you for your reply. Yes, i will try and have a good Christmas, not easy when you are wobbling about all over the place, people might think ive been drinking when i havent!!!
Yes, i was disappointed and very very frustrated on Monday with the MRI, but what could i do. If the scan comes up with nothing, i think i will have no choice but ask to have another one done privately, im trying to ignore the frustration and having Christmas is helping me to concentrate on other things, but i do feel really alone with this, I feel as if i have no one fighting my corner apart from me, and it feels too exhausting to fight it. But Im plodding on. Thought I might pop down and see my GP today and just have a chat to see if I can get him to understand my worries etc, its a new GP to me, so makes it a bit harder as we dont know each other. I dont mean to seem negative, and i hate it when i sound as if im unable to sort it out, but like i mentioned before, the computer seems to be the only place i can vent my frustration and worry. Once I know what im dealing with I will cope with it.
Hope you have a good Christmas too.
Best wishes
Jacey
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Hi there and Happy New Year everyone.
Not too much to tell at the moment, apart from I had a phone call from my ENT specialists secretary to say she was going to fax my results to my GP and she would send a appointment to me in the post to see the ENT guy. Well, not too sure what to make of that, but i have an appointment to see my GP tomorrow, I just get this feeling that they havent found anything, particulary as i received an appointment this morning to see the specialist in MARCH!!!!!!!
By this time tomorrow i will know, actually funnily enough since Christmas eve the pain in my ear has reduced, which is good, i had the worst pain ever in my ear on xmas eve and nearly went to the hospital, but since then the pain has definetley been better, but i still have the other symptoms, balance problems and facial twiches etc, I hope im not going to have to pay out for a private MRI, but if i have to i have to, I would rather be proved wrong than them be proved wrong in a years time or so. Sorry i know im waffling, but im worried, i dont know whats worse, worried theres nothing or worried theres something. :'(  Thanks for listening.
Jacey
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Jacey:
Will be watching for a post tomorrow. Good luck!!
Kathy
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Hi there Jacey...
Hope you get some good news tomorrow....be sure to let us know!
Best Regards
Derek
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Hi all,
Well, good and bad I suppose. The MRI came back negative, thats good isnt it? I put my cards on the table with the GP, told him i thought i had a AN, he told me thats what they were looking for as i have all the classic symptoms of it. I mentioned about not having the MRI done with a contrast dye and that it was a mobile unit and i was only in there for 10 mins max, that included talking to the radiologists. He did say that some MRI units are not as good as others!!
I asked where do i go from here then? He is bringing the appointment forward with the ENT specialist, i also mentioned that i have not yet had a hearing test done! He was understanding about my predicament, all i want is an answer, something is wrong with me and im not imagining it either, i know there is.
If i need another MRI done in the main unit with dye, it has to be requested by the specialist, so i will let you know the outcome when i get to see him if i manage to persuade him that i need another.
Can anyone tell me if they have had an MRI done with a negative result but then found to have an AN? also does anyone know what the percentage of negative results are from non contrast MRIs, I would be really really grateful for your input.
Thank you for your help
best wishes
Jacey
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I had an MRI with contract 5 years ago because of Tinnitus and they did not find a tumor; then 1 year ago I was back with more symtoms, ear pain, imbalance, increase in headaches (which I have also had for over ten years. The ENT could not find any reason so I INSISTED on an other MRI and they did find a 9.5mm AN. I am thinking that at the time of my first MRI the tumor was too small to be detected on the MRI but big enough to cause symtoms.
Keep advocating for yourself!!!
Bev
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Thanks Bev
i appreciate your reply, and its given me hope that im not going crazy, imagning symptoms etc, I will keep pushing the Drs until i get an answer, not easy tho is it, they know best dont they!!!!!!!!!!!!
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Hi Jacey
please be very careful with the advice received at NHS. I lived in London until 2 yrs ago, and went to seek medical advice when I first started noticing my left ear wasn't hearing properlyl. I was only seen by a nurse, who told me not to worry and not to waste doctor's time. Now, 2 yrs later, I live in new york and still had the reduced hearing (no other symptoms). I went to my GP, who sent me to ENT, who sent me for MRI (45 mins, use of dye) and then I found out that I had a 5 cm AN -- if I would have gone for proper treatment sooner, I would not have been in the situation that i'm in right now: I only had surgical removal as remaining option because it had remained undetected for too long. NHS can be very dangerous, please be careful and get to the bottom of whatever it is you might be experiencing. Good luck!