I was informed by my doctor that the MRI I had at the local hospital had revealed that I have an acoustic neuroma which is pressing on my brainstem. The doctor said that the nearest specialist would be in touch with me as the MRI dept . would have sent my scan straight to the specialist.
My husband got in touch with the appropriate hospital, only to be told that I would hear from them soon but that I was not classed as being urgent. Is this because this kind of tumour is not malignant?
Sue
Hi Sue, I can’t comment on why you’re not considered urgent as I don’t know. However, perhaps you need to find out from them what they mean when they say you’ll hear from them soon?? Does that mean weeks or months?? That may give you a bit more reassurance. What i’ve learnt from my experience with diagnosis and surgery is that you’ve got to get used to chasing people up and don’t be afraid to ask these questions. That’s great that your husband helped by calling, I found chasing things very draining so having my fiancé help me was a great help. Hope you are OK Sue xx
I know how alarming it is but the scan must be telling the docs it’s not immediately urgent. I doubt they would risk anything by leaving you too long.pressing on the brain stem is mainly classed as urgent so don’t wait too long, get your GP to give them a nudge take care, good luck x
Hi Kristyll,Thanks for your reply.
My family think I am not considered urgent because before being diagnosed with an AN I already had severe emphysema due to Alpha 1 anti trypsin deficiency ( which rules out any chance of an operation) and a full length aortic dissection with aneurysm s due to an ACTA2 mutation.
I'm falling apart!!!
Take care,
Sue xx
Hi Sue Hope you are ok. I usually have a 6 week wait between my MRI scan and the results but I get informed of the dates for both appointments. It certainly doesn't hurt to ring and chase regularly. They will understand you are worried. Xx
Hi Sue, I was diagnosed in Sept 20 with a benign A. N. I had a scan within weeks, confirming the size 13 x 8 mm. I had my second scan 1/7/21. I have a tel or zoom appointment on 20/9/21. I have been told that the majority of A.N. Do not grow. I had to chase in July this year. I had my first zoom meeting in Sept 20. The specialist from Salford Royal showed me the scan of my brain, and the position of the A.N. I joined the British Acoustic Neuroma Association. BANA. I have joined in on one Zoom meeting. My symptoms are Tinnitus, Headaches, Fatigue, Deaf in my right ear. But after saying all that I have adapted, pacing my self, I have found the NHS to be great. Good luck. Mike ,
Hi , I'm new to this site. Are you suffering from any neck pain with yr AN, all noises sound really loud does anyone else have these symptoms.
HiSorry to hear your experiencing neck pain. I was too, but it turns out I was tensing all the time when noise around me got loud, I had strained the muscles in my neck and down my shoulder/arm. I was referred for Physio, which helped immensely. I’m aware of this now so try not to tense my neck.
I was only 18 months from diagnosis to treatment as my AN grew at an accelerated rate - from 6mm to 21mm - was borderline whether to be given surgery or treatment.
I am 9-months post Stereotactic Radiotherapy treatment and still experience stabbing pains in my head like being stabbed with a sharp instrument and also brain zaps, although they are much less frequent now. I had another MRI in July and am waiting to hear from Consultant. I purchased noise cancelling headphones and what a difference!
I’ve focussed on staying positive and trying not to worry as AN’s are benign, usually slow growing, I’ve met many people who have lived with theirs for years. It’s life changing not life threatening and that is a blessing.
This is an excellent site for support from people who understand exactly what you’re going through. Hope you get your neck pain sorted. Take care and stay safe x
Hi Birdwatchers, thanks for the reply back. Maybe physio is what I need next. I've had botox injections in both sides of my neck muscles, but they haven't helped. What a journey everyone seems to go through!
Hi Bewley12We all seem to have similar journeys but with different lengths of recovery and different symptoms.
Knowing others experience similar symptoms to me is reassuring as it’s not ‘all in my head’!
Best of luck on your journey, stay positive and safe
Yes the noise in my ear is very loud but if someone drops something the bang drives me crazy
Hello,I suffer with an achy neck. I would not say it was painful, but I can always feel a pressure on the back of my neck.
As for sound......... I find certain noises or pitches really loud and if more than one person is talking, I have difficulty distinguishing the words.
Take care,
Sue xxxx
This Is your body Sue I would contact the relevant medical team and ask why it’s not considered urgent xx if you can’t get an answer and you are in the UK go through to PALS which is the Patient Advice and Liaison service and ask them to look into it for you as the information you have from them is not sufficient for you xxxx good luck 🙏🙏👊👍
Were you given any information about the size of your AN? Mine took 5 months to be diagnosed after I’d seen a neurologist who dismissed my symptoms as ‘a trapped nerve’! Prior to that my GP was reluctant to refer me to a specialist and only did so when I told him I had private health insurance. I’d had symptoms which I’d ignored for two years. My tumour had a diameter of almost 4 cm at its widest. My consultant surgeon (who I saw 2 weeks after receiving the results of my MRI and 5 weeks after the MRI was done) booked my surgery almost a month after my consultation with him. He told me that it wasn’t ‘urgent’ but that he was prioritising me as my symptoms suggested that my tumour was in a particularly aggressive growth period causing pressure on brain stem and trigeminal nerve.I wouldn’t panic but I would ask for more detailed information. I know of someone who was diagnosed before me, that was 16 years ago, she was recommended to not have surgery and is still alive but the quality of her life is significantly negatively impacted.
My diagnosis took tro and a half years and I was skin and bone
Hi Susan, get in touch with PALs, they will chase up yr referral. I've just had a response from them today, took all the anxiety away from me.
Hi Sue I had a AN that was pressing on the brain stem but as mine was considered suitable for stereotactic radio surgery I had gamma knife radiation at Sheffield hospital. Originally the neurosurgeon wanted to operate but I didn’t want the op so went for the gamma knife it took about a year to finally get referred and get the treatment. So if it’s just touching rather than pushing on the brain stem they don’t seem to consider it to be too urgent! You don’t say which hospital you’re under so it could be they’re snowed under with covid or you may have a consultant who’s a bit slow with getting things sorted but I would certainly push for some answers! Ring the consultants secretary and get his/hers email address then you can get in touch and ask what’s to happen and what treatment is he thinking of. Don’t be afraid to ask sometimes you need to push to get the answers once you have some answers you can do some research and decide how you want to continue I would fully recommend taking a look at the BANA website.
How long diagnosis after MRI
So frustrated with it all
Waiting for Gamma knife 
Acoustic neuroma and employment
awaiting diagnosis from MRI suspected AN
