symptoms

[jacey]

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 

[Derek]

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

[Palace]

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

[jacey]

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

[Sue]

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

[Derek]

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

[ppearl214]

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

[jacey]

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! 

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.

[Derek]

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

[jacey]

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

[Derek]

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

[rebarman]

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.

 

[Andrew A]

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

[Derek]

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

[jacey]

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.

Jacey