symptoms

[Andrew A]

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

[jacey]

Hi Andrew

six weeks!! thats ages! you had to wait all that time to find out what was wrong with you?    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   

[Andrew A]

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

[jacey]

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

[Andrew A]

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

[Derek]

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

[jacey]

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

   

[jacey]

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

[Obita]

Jacey:

Will be watching for a post tomorrow.  Good luck!!

Kathy

[Derek]

Hi there Jacey...

Hope you get some good news tomorrow....be sure to let us know!

Best Regards

Derek

[jacey]

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

[BevM]

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

[jacey]

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!!!!!!!!!!!!

[maarten]

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!