How long from non-urgent to urgent

[Lilolilo]

In January 2023 I was aware of tinnitus developing in my left ear only. After checking a NHS site to see if it could be linked to Covid the site flagged up possible issues with tinnitus in only 1 ear and recommended a visit to my GP. I saw a doctor in early June during which the possibility of an AN was discussed and the benefits of an MRI scan. At the conclusion of my visit I was told that I would be referred to the ENT unit of my local hospital as a non-urgent case. In August I received notification from the hospital that they had received my referral but could give no time scale of when I may have my first visit. Since this my tinnitus has got worse combined with a noticeable decrease in hearing plus an increase in headaches. I appreciate that the NHS is currently overwhelmed with a backlog of appointments but would benefit for any guidance as when to contact my GP with the aim of getting re classified as an urgent case. This medical issue is constantly on my mind which could be the result of increased headaches.

[Sheryl5013]

Hi there

If you have Facebook there’s a fab group that’s active that would give you answers to your questions..very supportive too…

British acoustic neuroma support group.😊

[Lilolilo in reply to Sheryl5013]

Thanks Sheryl, I picked up on this group by reading posts on here yesterday, I’ve submitted a request to join the group which is currently being processed.

[Sheryl5013]

My timescale was drs in February

I took myself off to spec savers for a hearing test and went to the drs with the results.

Referred to ENT had appointment in April ,MRI end of May and results given middle of June.

Got referred to St George’s hospital and had a telephone appointment at end of July.

I haven’t had a face to face appointment yet and I’ve just been put on watch and wait till next MRI in December.

I know it varies on treatment depending on size and location of tumour and if you can join the group on Facebook that i mentioned you would get loads more advice and help from the members…good luck 🤞

[Lilolilo in reply to Sheryl5013]

Thanks for details of your journey, I think I will give it another month and if no appointment for ENT by that time I will push it more.

[Karbob]

Hi Lilolilo, sorry to hear what you are going through. You could try to get hold of the ENT Secretary, and see if you can get a cancellation. Urgent cases would mainly be anyone with suspected cancerouus tumour, thankfully AN aren't classed as urgent because they usually grow very slowly in comparison to a cancerous tumour. Hope this helps and you get a cancellation. Everyone also seems to go down different pathways, you could see an audiologist about you hearing and tinnitus. Some get referred to audiology by their GP, it depends where you live.

[Lilolilo in reply to Karbob]

Thank you, I will try and contact the ENT secretary but in my letter of acknowledgement from them they did say not to contact them until they have been in touch again. I will try though

[Sunshinelater]

Hi, you have described worsening symptoms since your GP appointment, and if that was me I would go back to GP to let them know , and also how that is impacting you. Hope you get some progress.

[Lilolilo in reply to Sunshinelater]

Thank you, if I haven’t heard anything or been able to move things forward in the next 4 weeks then I will return to see my GP.

[Hidden]

I was referred in Mar 22. Had first ENT appt August 23! That was only because I complained. MRI done but ENT consultant just ruling AN out. 'Shadow' seen and had CT and another MRI done. Waiting to see what this all means which is a particular kind of torture. Go back to your GP and ask them to expedite the referral due to worsening symptoms.

[Lilolilo in reply to Hidden]

Cheers Cubby, will do otherwise I feel it could be well into 2024 before anything happens. Our health trust is on its knees.

[JDN57]

Sorry to hear about your problems but you 'waiting game' journey has just begun. I was diagnosed in September 2021 and apart from one telephone appointment with my consultant on 17th January 2022 I haven't spoken to anyone since. Mine is relatively small AN 11mm and told watch and wait with a scan every 12 months. Scan in October 2022 I didn't get the results until July this year (even though I chased after 6 months and told I would have to wait until MDT had review the scan). The results came in the form of a letter stating the AN had grown and I would be scanned again in October 2023. Just received date for next scan and just crossing fingers the results don't take 8 1/2 months again. My symptoms are still as bad - no improvement in balance and tinnitus is now much louder than it was. Spoken to my GP who said I should just wait for the scan results. You just have try and carry on and not think about it which is much easier said than done. Good luck.

[Lilolilo in reply to JDN57]

Thank you for your reply. The more I see about AN makes me realise that the journey through the NHS is not a quick one which I’m slowly beginning to accept.