Worried Newbie UK

[mrssteam]

I wonder if anyone out there could give me some advice/reassurance.

I was referred to ENT earlier this year by my GP who suspected I may be suffering from Menieres Disease, following a spell of worsening hearing loss in my left ear, unsteadiness &falls, vertigo and a constant high-pitched tinnitus. I am 47.

ENT did all the necessary hearing checks which confirmed sensorineural hearing loss in my left ear (right ear almost perfect)and referred me for a routine MRI, to rule out any other causes, before my review appointment which will be at the end of April.

I had my MRI last Friday and this is where the fun begins... on arrival at the Hospital the Radiologist told me the scan would be a quick 15 minutes which was indeed the case however, when I can out of the scanner she asked me if I would mind going through again saying "please don't be scared but the images went through a bit faster than I expected and I just want to make sure". I was duly re-scanned (another 15 minutes) and then the Radiologist asked if I would mind if they injected a dye into my arm and repeated the scan for a third time. She advised me that it was all very routine it just made things clearer and to reassure me she patted my hand. The whole procedure took over an hour and not the 15mins I had been lead to believe.

To cut a long story short I was, understandably, having kittens by this stage - as was my poor husband who was waiting for me outside and the problem is now that I have convinced myself they have found something. I know the scan results take about two weeks which does fall in quite nicely with my next ENT appointment but I would appreciate some reassurance from anyone in the uk who has been through a similar experience.

I am trying to convince myself I'm being silly but it's worrying me so much I struggling to sleep and the lack of sleep is making me feel worse.

Thanks

[Kathleen_Mc]

You are not being silly, I too would worry that they found cause to rescan with dye however that being said it might mean nothing more than they wanted to be sure what they were looking at as indeed nothing to look at! I hope the time before you get results passes quickly!

[mrssteam]

Perhaps I was right to be worried - I've just had a phone call and now have an emergency ENT appointment for Monday.

I may call on you all over the next few days....

[Ned]

I had something similar happen to me. The MRI is usually read by the Radiologist the day of the scan and he dictates the report. A few days after the scan I went back to the hospital and requested a copy to send for another opinion and they gave me the report. It was a shock when I read what was on the report but I didn't have to wait another 2 weeks.

[Kathleen_Mc]

Be sure to let us know what you find out on Monday!

[Islandgirl]

Sorry to hear about your current situation Worried Newbie but hope things will be at least explained on Monday.  I am also in the UK and originally in 2011 had a similar experience to yours.  Following hearing loss and tinnitus I was referred for an MRI.  I arrived to have this done and was told it would be only about ten minutes.  After about twenty minutes the radiologist just pulled me from the machine and said she was just going to put some dye in. I then went back in the machine for another fifteen minutes or so.  I was not told anything at that stage and went on my way but I was pretty sure there must be something they didn't like the look of which turned out to be an AN.  I was then referred to Neurology. I had GK at Sheffield in January 2013. 

To be honest it's very likely they have spotted something on your MRI but I am sure you realise that.  All I can say is try not to panic, easier said than done I know but if you do have an AN you will get plenty of support here.  I have learned more from ANAUSA than anywhere else. 

[mrssteam]

Thank you everyone for your kind thoughts and positive comments.   

I am worn out with the emotion of the last few days (coupled with a lack of sleep).  The only positive I can focus on is that whatever I am told tomorrow at least I will know what I am faced with and then I can deal with it.  It is the enormity of what could be happening that makes my current situation such a scary place to be.

Knowing that others have experienced what I am going through is a great source of comfort.

I will of course update you with my results.

[mrssteam]

Well my worst fears are confirmed - its 2cm.

I'm sure I'll have lots of questions but at the moment I'm just a bit numb so I'll sign off for now - thank you all for your support so far x

[Echo]

Sorry to hear your AN has been confirmed, but you will have lots of support and help here with fellow AN folks. The day I was diagnosed I had a good long cry and then felt relief that the AN was not a malignant tumor.  At age 47 with a 2 cm AN, you should most likely have a choice of radiation or surgery.  Once the shock of the diagnosis has worn off, and you get some rest, you will be able to start thinking clearly again and focus on what's next.  We will all be here waiting to help you in any way we can.  There are lots of successful outcomes to treating these little aliens so try and keep on the positive side of the fence! 

Cathie

[iz2014]

Hi,

I'm in the UK and had an experience similar to yours. I ended up with two MRI. One without dye and then a recall for one with dye. Today I had the one with dye. It took about 40mins. I had 20mins without dye and then 6mins with dye. I already know from my last MRI that I have a 3cm AN. It has taken me a while to find my positive determined self after such terrifying news. I totally understand how you feel. But after chatting to the people on this forum and watching a VERY positive YouTube video posted by a 22year old lad in America, I feel soooo much better. With time you will definitely feel more in control of your thoughts about this. I am now waiting to see my ENT in one weeks time to get the details on what exactly is in my head and how we are going to 'exterminate' it... I'm expecting and wanting surgery. Keep us posted and best wishes with your treatment and recovery.

[Rash132]

HI,  I am also from the UK.
I was diagnosed in August 2012.  After an initial MRI scan I was called again after 2 days to be scanned again with contrast dye.  I thought nothing of it.  My tumour was 5mm so I was put on watch and wait.  My recent scan in January showed growth of 8mm in 1 year it now mesures 14mm x 9mm.  I have now been refered to the Skull base Unit in Manchester.  I now having to make a decision whether to go for surgery or radiosurgery.  It am finding it really difficult to decide.