I was diagnosed with AN in March 2022 at a referral to the hospital following a health check up in December 2021 during which a difference in my hearing between left and right ear was detected. AN measured 11x13 mm on MRI scan and I was referred to skullbase surgeon who recommended watch and wait with follow up check in 6 months. Next MRI scan in September/October 2022 showed size of tumour was stable and no growth. Scans and specialist consultant visits were funded by my private health insurance (Aviva) that is part paid by my employer partly by myself. Although I have recently developed some worsening symptoms of tinnitus and went to GP who wrote a referral letter Aviva refuses cover for ongoing treatment because it is classified as a chronic disease. Hence the only option I have is to go through the NHS or pay for scans and consultant visit myself. Has anyone got experience with health insurer refusing to cover ongoing treatment/check ups ? Thanks in advance..
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roland0302
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I have no direct experience with this issue but similarly my husband went through diagnostic scans etc for a suspected neurological condition (Parkinsonism) through his employer based private health insurance, also Aviva. This meant he was diagnosed much more quickly.. but it seems that there was a limited amount of HC funding with his Insurance which 'ran out' eventually and he was re-referred to a NHS Neuro for follow up appointments who then diagnosed him more accurately with Multiple System Atrophy. He then put himself forward for a clinical trial and was monitored regularly but was a guinea pig for invasive surgery.
So once diagnosed, you're in the loop - but with smallish ANs it seems the watch and wait 6-12 months is normal within the NHS. I assume you would have to fork out if you want more scans, unfortunately.
No idea if this helps but best of luck - people seem to have different experiences in different HC trusts.
Hi, Thanks for your reply. I have gone the NHS route now and was pleasantly surprised that I received follow up call next day to schedule an appointment with ENT. I assume that ENT will send me for MRI and skullbase surgeon. Different hospitals but main thing is to have size of tumour checked in case there is any growth. Although symptoms (tinnitus, one sided hearing loss, balance issues) are getting a little worse I was explained that symptoms are not proportional to size of tumour.
Excellent! That's really good to know, thank you, my symptoms seem to fluctuate and it's difficult not to think that little blighter's getting bigger...
Hi, I was diagnosed with a 9mm acoustic neuroma 6 years ago. I have had MRI scans every 12 months on the NHS for surveillance. No change in the first the five years. Waiting on the 6th year results at the moment. Tinnitus is the on going symtom. Worse on some days when fatigued. Hope this helps. Good luck.
Thanks for reply. Hopefully no change again after 6 years and tinnitus is not getting worse. Feeling my tinnitus is also worse when tired/after stressful day in the office. Constant beep in one ear when trying to get to sleep at night.
I’m with BUPA but, as mine was shown to have grown, I can’t say what they would have done, if it had not been growing.
Ordinarily the tumour, if growing, grows slowly.
Apply for copies of the scans, which is your right and get your GP to refer you.
Issue here is, if you do need surgery it appears the NHS need to confirm this and for this, they must do the MRI, so understand. You could go privately and a short notice MRI in London might be available for £250 - that’s a 24 hour notice scan. But, the NHS may insist on doing it themselves, this creates issues for proving it has grown because they would be referring back to a scan the NHS never did.
You may have a time limited plan. It may be worth checking. Ask Aviva if your GP referred you again and you got a second MRI more than 12 months after the last one or it was in a new policy year, whether they would fund it in that case. It’s not unusual for MRIs to be limited to one every 12 months apart from those done at the point of surgery.
I would have expected employer funded cover to include these conditions, so what they say sounds very strange and perhaps a mistake.
Thanks for sharing your experience. I went back to Aviva few times but they confirmed no cover for chronic conditions despite referral letter from GP stating that my conditions had worsened. I will complain to my employer about them since they had not even bothered to respond to my latest email in which I pointed this out. In the end I did not follow up with Aviva on the MRI since it turned out that NHS did a much better job scheduling me in for MRI following the ENT appointment. Now since the MRI showed my AN has grown since last MRI, I have been referred to skullbase surgeon again. Since this was an NHS referral (I did not ask to be referred via Aviva) and skullbase surgeon is in different hospital I was told waiting times will roughly be 9 months after which it would be time for my annual check up again. I am now getting worried that with the growth rate and increased symptoms tumour will be too large for CK and operation is the only way out. Although Aviva did confirm they would cover both operation and radiation treatment, I think they have not done anybody any favours by causing unnecessary delay. From what I read on this forum I can generally expect to be off work much longer following operation than following CK. Will probably go back to Aviva again to convert the NHS appointment into a private one so I can be seen quicker.
Just wanted to say I’m glad you found the nhs route to be good, I too was with Aviva when still working but actually have found the care and follow up etc etc to be brilliant with nhs. You’ll be properly monitored and if you ever do need treatment, which hopefully you won’t, you’ll be in excellent hands. Hopefully you’ll get support from audiology re hearing and tinnitus… if you contact the brainstrust they offer weekly hypnotherapy reset sessions after you do an initial couple of sessions about the benefit of it, and this can help adapt and manage the crazy noise. Plus hearing aid with tinnitus masker via audiology. ( you could possibly get Aviva to pay privately for that?) All the best! There’s lots of us living well with these squatters, you’re not alone.
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