hi everyone first post on here but actively read the forum, been diagnosed with an accoustic neuroma 15mm x 15mm across 2 axis ? Due 2nd mri around now but with contrast. I was told at 1st consultation that after this mri if it has grown at all i will need to choose Radiosurgery or Surgery. Ive already decided on surgery as recovery is around the same and also dont like the idea of " debris " being left inside my head. Anything i should know about contrast dye ? And also if anyone doesn`t agree with surgery decision i would be welcome to reason also. Im just a bit fazed by it all.
Thanks in advance.
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reveresco
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Hi welcome to the AN journey😊 I had dye with an MRI nothing to worry about just a cold sensation when it goes in l opted for Cyberknife radiation as didn’t want the surgery have regular MRI to keep an eye on it next one 11th Feb fingers crossed it will have reduced at the end of the day it’s what you feel is best for you it is really overwhelming at first but with lots of support you will be fine
thanks, was overwhelmed for around 8 mths till i got consultation in Aberdeen, after that it seems i have passed it on to them, i `m around 85% deaf in right ear with really bad tinnitus , tried a hearing aid but wearing specs when working it kept falling off my ear,,,, rather than launch it into the nearest field i handed it back, just waiting on appt now, always seem to be waiting !!!! Thanks again and good luck on the 11th.
I also tried a hearing aid but didn’t help with tinnitus or deafness l also gave it back you seem to adjust to not hearing in one side just really hard when you’re in a crowded place . Good luck and keep posting its good hearing how everyone gets on
Hi, understand your choice, my wife had gamma knife surgery 2 years ago and is doing ok with now a reduction in size of the AN. Think the position of your AN is an important part of the decision, is it clear of any other issues, facial nerve etc. This will decide the effectiveness (and risks) of conventional surgery. Hope this helps and best of luck.
thanks,apparently mine is in a canal in the skull ? I`m not a great fan of radiosurgery and would rather it was removed, i realise they may not get 100% but its a risk i`m willing to take. i`ve been told my affected hearing may not recover and im fine with that although its a nuisance. Thanks
I am in a similar position, had diagnosis in September 2019, waiting to see specialist at another hospital.
The mri with contrast is nothing to worry about. I had usual mri experience then was taken out of the scanner, the dye was input intravenously, I was told it might feel cold but I didn’t feel anything at all. It had no effect on me at all so please do not worry. . Good luck with your treatment.
Hi. I had my AN in July...CT and 2 MRI, one with contrast.
Showing a AN 22mm, before this I was at home. Didn’t have a clue I had one. But started getting terrible headaches, dizzy, falling over.
Then one day i was standing at my kitchen door, and fell backwards straight onto my head... and started to have seizure.
My 2 daughters were here, I can’t remember any of this. I totally blacked out. Woke up to Paramedics in my kitchen.
Finally after making it to the ambulance, I started to be sick, another seizure.
I only know all this as I find it so hard to remember. I was taken straight into Acute Medical unit....was kept in for 5’days. No more seizures...! Couldn’t walk proper, needed a walking stick..... and now I’m how I’m so depressed. Referred to a different Hosp who my hospital was working with while I was there.
I haven’t even seen a neurosurgeon or neurologist yet!!!!!’
I think it’s terrible. So since being discharged from hosp I haven’t seen anyone!!!!!
Simular situation here. Diagnosed with a 40mm AN in November 19 and feel very ill all the time. Fall over all the time, severe pain, deaf in one ear etc. I still waiting, I am seeing a specialist at another hospital on Wednesday. It feels like hell on earth with the wait. Good luck.
Hi, don’t worry about the dye but just remember you go through the machine twice and the dye does feel a bit cold. Other than that it’s the same as the first MRI.
I had a contrast on my first MRI before I was diagnosed with an AN. Had one scan, they found something and then did the contrast on the 2nd scan. The dye you cant feel its just the needle they put in your arm. The contrast helped the doctors realise my AN is affecting my CSF flow. Good luck with your scan.
It can all be very overwhelming. Once you make your decision, interview at least two or more surgeon. I found out later there was a better surgeon in my area;I just got anxious & really liked the 1st guy, I just went with him.
Contrast dye... I know of two different kinds...I cannot remember the names. All I remember is one the nurse said it would feel cold when they administered it & the other felt warm. I did fine with the
"cold" one, but broke out in hives & felt nauseous with the "warm" one. As far as during the process, it was no worse than just having an IV. Wishing you the best! Glad you are reaching out for support before. Continue to do so after as well.
Unfortunately I don't have the option to pick and choose as being dealt with by NHS, confident though and wish they could just get on with it. I'm not the most patient of patients and feel my whole life is on hold, just frustrating... Thank s. Good luck.
Hi Reveresco, just saw your old post. How are you? Did you get the scan and hope all is well?
Of course realise being 7m ago must have been just before Covid struck. Wishing you the best. I’m new here too. Went in to A&E after hearing going on left ear & pain then going numb. A&E said AN gave v strong steroids. Numbness went down that side of body - later ct scan but nothing. Have Preexisting ms seeing that consultant to see if that’s what it is - ie a new episode .
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