I was diagnosed back in March 2021 with an AN on my left side by an ENT at my local hospital following an MRI. I have some symptoms that align with an AN (hearing loss and tinnitus, issues with balance) but I also experience headaches most days. I was referred to a neurology team at a bigger hospital and was finally “seen” (telephone consult) by an ENT there last week. He informed me that it’s not an AN but an Osteoma which apparently isn’t the cause of any of my symptoms and doesn’t require monitoring so they’re discharging me. I feel very confused and concerned now as I feel back to square one in terms of not knowing what’s causing my hearing loss and other symptoms, as well as feeling unsure whether to trust them. Has anyone else been misdiagnosed with an AN?
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I have and I’m utterly confused to because the second opinion said it’s vascular something that’s been there 10 years in scan and hasn’t changed. Left ear screaming all day where this thing is so confused what to do now??
Hi thereSorry to hear the uncertainty around your post it must be very worrying for you. The new diagnosis hasn't addressed any of your symptoms so if it was me as you're currently entitled to ask for a second opinion following your diagnosis I'd be doing just that.
The brain tumour charity that's linked into this site has some info on how to go ahead asking for a second opinion and they have a support line that you can contact for advice and support as well.
If it isn't an AN then that is very positive news on one angle but you still have symptoms so there is no harm in confirming the new diagnosis. Stress negatively impacts on everyone's health so this could help relieve some of the worry.
No worries. Meant to say that I have headaches with my AN which my radiologist dismissed as being related to my AN during one of my radiotherapy reviews. I stuck to guns as the headache's were one of the reasons I went to my GP in the first place. Diagnosis remained the same despite difference of opinion so 'one size really doesn't fit all'
May I ask which part of the country you are in? I have just had my MRI and am waiting for results. I ended up 40 miles from home at Addenbrookes for this as my local ENT consultant had been downright rude and wrote saying that if I felt that i needed a scan ‘I should arrange one myself’
I’m in Durham so was seen there first and was seen in Newcastle by the “specialist”. I’m sorry to hear that, I felt both people I saw were pretty rude and dismissive as well. It’s so frustrating as I’ve just been through fighting with doctors over my mums care for the last four years as she had a terrible time and passed away two months ago from breast cancer and I know an AN is not as serious usually but I’m tired of not being taken seriously or listened to, to be honest.
I hope you have a better time at the new place! Good luck with your results.
It was 17 years ago when I saw my GP about numbness and tingling on the left side of face and scalp. i told him it had been happening over a 6 month period intermittently but had been consistent and more pronounced in the last month. his 1st suggestion was that i 'just see if it goes away again.' His 2nd was to offer to prescribe anti-depressants and steroids. i told him I wasn't depressed but soon iwould be if i got fat on steroids. I told him I wanted to be referred to a consultant; he began to argue with me but I cut in and told him I had private health cover. that made all the difference.
I saw a neurologist (who I learnt was a mate of my GP). He dismissed my symptoms as 'probably due to a trapped nerve.' by this time my hearing was affected so I questionad him about that. He told me to 'go see an ENT guy.'
It took over a month to get another GP appointment; by this time i had no discernable left side hearing (there were sounds if I put the phone to my left ear but they were scrammbled). This time I was referred to a wonderful ENT consultant, correctly diagnosed, confirmed with MRI, fast-tracked to Proff. Ramsden (aka GOD); successful surgical removal 7 months after 1st GP appoimtment. He was then the leading surgeon in this field in Manchester; he handled my surgery but I met 2 other surgeons who were following in his foot steps. I had every confidence in their skills
Unfortunately, some of the post operative side effects that i was told i would have to learn to live with(and i have perfectly happily) have worstened and extended to a greater area of my face scalp and throat. This time my experience with different GP, (I sacked the other), and hospital departments has been exemplary. I'm having my MRI tomorrow. I'm hoping for the best (over-active imagination) but fearing the worst, that there's been regrowth of the AN over the last 16 years. if its causing more problems now than it did then it may well be 4+cm in diameter.
Hi Lois, and thank you for responding. It is now 6 weeks since my MRI and no results yet. I chased it up through PALS at the hospital last week and they rang back yesterday to say that the scan has now been reported and that the consultant is writing / has written to me and that an appointment would be forthcoming. The guy in PALS clearly had access to that letter and I asked him, on the phone, to simply confirm that it is an AN. After quite a long silence he came back to say that ' it is not as straightforward as that and that I need to wait to discuss with the consultant'.
I hope things work at well for you and that you manage to have a good Christmas
it's such a bumber when you get a medic who seems to have no empathy for what you;re going through. I've experienced polar opposites, thankfully the brilliant have outweighed the rubbish.
hope you're consultation goes well, remember you're not in a crisis and a delayed intervention won't have the possible catastrophic effect that a delayed response to a malignancy may have.
If you are able to , ask if you can have a second opinion from the skull base team at Manchester royal Salford. They are supposed to best in the U.K. with Acoustic Neuromas and often treat people from other countries due to there expertise.
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Head tingling face, legs, and arms 
Surgery 1st April 2019
Waiting for Gamma knife 
spoke to my consultant today and will be referred to queens square,london. 
Awaiting results but saw scan
