I was told I had an AN in July (via post) 4 weeks after an MRI for chronic headaches/migraines. I didn’t get to speak to anyone about it and pretty much had a mental breakdown. I had a scan with contrast 5 weeks ago now and had an appointment with neurologist on Monday. Neurologist said no report had been done on my last MRI so he was none the wiser. Is it common to wait so long? No one seems concerned about the fact that I have an AN! Should I be worried or not worried? This is madness.
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Stick79
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Firstly I know what it’s like to be freaking out - been there, done that and got the t-shirt. Please don’t go researching online about AN’s as you’ll just make yourself worse by looking at some sites.
I am assuming that you were given some information regarding a further MRI scan? We’re you given any info at all? It’s difficult to reply fully as you don’t say if you were given any follow up appointment?
Thank you for your reply. I don’t have any follow up appointment scheduled so far. My consultant said the radiologist had not got round to reviewing my scan yet due to a back log and assumed they would write to me when it had been done. The Scan with Contrast was 5 weeks ago. So now i’m just sitting around waiting for a letter in the post regarding the next step. I find that crazy! Apparently it can take up to 8 weeks for scan reports.. I know these tumours are slow growing but it’s difficult to sit around not knowing what will happen next
Completely understand how you’re feeling. The wheels of the NHS don’t seem to turn very fast. I would think they will schedule a follow-up appointment once the scan report is in. As you probably know, much depends on the size of the Tumour. I was diagnosed in 2013 and had FSR
eighteen months ago. Up to that point I was on ‘wait and watch’. I had MRI’s every year and hearing tests. Fortunately my hearing has, so far, not been affected. My main problem was balance and headaches.
I know I found the whole process of hanging around waiting for appointments and information very frustrating and frightening. I know I can’t say anything that will make you feel any better at this time but try and remain positive and remember that medicine and technology has come a long way. I know that anxiety heightened all my symptoms.
At this point my Tumour has remained stable with no further growth so
That’s a positive. As I said previously, don’t read all the cases out there because for every positive story you’ll read there will be some horror stories - I learnt the hard way! I really wish you all the very best and I totally understand all your concerns. I’m sure once you get all the relevant information and you know exactly what the plan is you’ll find your own way of dealing with it as we’re all different and approach things in different ways. Just make sure you get all the answers to your questions. I know I had a list of questions as long as my arm!
Try not to worry, in the UK they tend to watch and wait depending on size and position, have you been given that info yet, I wasn't but I phoned. my gp and they gave me the info, mines 1.5cm and want to monitor it till next year to see how fast it grows as there's nothing to compare it to, good luck x
Thanks guys. Yes, the Consultant said they will probably just wait and watch but couldn’t say much more without a report. We had a look at the images but the resolution was so low that he couldn’t make out the AN. He was pretty frustrated with the whole thing as was I.
I guess i’ll wait until the report has been done. I’d like to know the size at least so I know what i’m working with
Do you all get headaches? My initial referral for an MRI was headaches. The Consultant said AN’s don’t cause headaches, just ringing in the ears and poor hearing. I do have a bad ear and the ringing but on the opposite side of my AN.. Very strange..
I don’t know why he’d tell you AN’s only affect the hearing and cause tinnitus? I’ve spoken with two very experienced consultant Neurosurgeons and two ENT consultants (two different skull base teams) who all specialise in these tumours. You will find that people with AN’s experience many different symptoms - headaches, nausea, tinnitus, complete hearing loss, balance issues etc etc. I personally have never had any problems with my hearing. I was suffering from major balance issues, headaches and nausea with a little tinnitus. I guess that’s just your Consultants opinion but I’ve never had any medical person tell me that AN’s only affect hearing. The general opinion seems to be, in my experience, that everyone is different and it’s how your body reacts to this ‘foreign body’ being there. There are people who have been diagnosed that have had no symptoms at all!
Hope it all goes well for you and as I said, ask as many questions as you want from your Consultant and don’t be fobbed off with any sweeping statements! I’m pleased to say at this point, after treatment, I’m practically symptom free so long may it continue! Good luck.
As far as I am concerned, the headaches come from balance issues. The cerebellum is overworking, trying to coordinate your somatosensory system as usual, but failing because it is getting false information from the AN inner ear. A good test to determine that this is the cause of your headaches is to feel the back of your head and see if it is hot (or warmer than the rest of your head); if so, it is probably your cerebellum causing your pain. It also causes static in your head, as does the tinnitus, causing memory loss. If a cerebellum problem, you can do exercises that reset your cerebellum; see the following link:
Hi I went four times to my doctors with headaches n pains injaw n ear it wasn't till 5th time I went when they decided to send me to hospital had a hearing test then was sent for me I scan .I recieved a phone call day later saying a contrast scan needed to be done I had that n then week later or so I recieved letter in post telling me not to worry I had a tumour. I went into complete meltdown too.i saw the Dr at hospital soon after and was told it was AN she then transferred all my notes to Newcastle RVI this all took place from May to October. surgeon at Newcastle explained they would send my scan to Sheffield to see if anything could be done using a thing called gamma knife which ment no surgery. It was a few month before I heard anything I was then told it was to large to use the gamma it would have to be surgery I went into meltdown again saw surgeon he explained they were goin to debulk it and how it would be done.i left the hospital in tears . Then the letter arrived with the date I had op in June 2016 I have never been so terrified. But all done 2 years on I have slight problems but I'm still here
So.... update... apparently i don’t have an acoustic neuroma!! They assumed it was an AN because of how it looked on my first 2 scans but during my MDT meeting the radiologist went through my last MR with Contrast and decided it was a Vascular Loop! So after 3 months of anxiety and stress i am now ‘apparently’ Tumour free. The Vascular Loop is mimicking AN symptoms. I’ve been told to just live with it! So i guess i’ll be dizzy and half death for the rest of my days... thank you for all the responses.
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