Finally...I was referred by my GP to ENT services to check for an acoustic neuroma back in May 2021, finally 1 year later I am due to see a consultant next week. It's been that long waiting for a referral that I'm a little nervous now 😂 it's just to see a consultant then they will list me for an MRI scan.
My symptoms are left sided tinnitus, hearing loss and more recently some feeling of being slightly unsteady when walking. This is intermittent. I also have some odd sensation coming from my ear, a bit of a tingling sensation, again intermittent.
Hopefully I will get some answers soon. I feel like it's been a long year. The joys of a pandemic!!
That's good that the ball is rolling and you will finally get to see the specialist. If it is an AN they tend to be slow growing so that can take some of the anxiety out of waiting but it is frustrating that you have had to wait so long, hopefully things will be much quicker now and you will get the MRI soon after the consultation. Hope all goes well for you, keep us updated.
Good luck! My symptoms (mostly same as yours) turned out to NOT be AN, potentially Meniere`s. It`s all a worry, but it is good to know what you`re dealing with then you can take the appropriate steps.
I’m in exactly the same boat. It could have been my post. Was referred in June last year and have an appointment in about 2 weeks. Should have been last month but I caught COVID. Hope everything goes well. Let us know how you get on. I would love to compare notes.
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Hi llamahead. The pandemic has caused considerably long waiting lists for us both. Certainly not the hospitals fault, it is how it is. But it did get me thinking there will understandably be some people's anxiety going through the roof when toke it could be a tumour so you're being referred. To then wait a year. It just seems to unfair. Which hospital are you waiting to be seen at? Good luck to you!
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University hospital birmingham . You?
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Oh...not far from me! Worcestershire acute
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hi Kimberly. any news from you ? my consultant appt cancelled again due to her being off sick. i don’t have a date at all now. so frustrating. have you had an MRI yet?
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Hi llamahead. How are you? That's awful you're still in limbo, do you have another planned appointment? The hospital called with a cancellation MRI but unfortunately we were away but I've got mine on the 13th July. Not long now.
Hopefully you will get some answers soon.
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no appointment date yet. hope your MRI comes back clear. i’ll be thinking of you on the 13th.
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Thank you Llamahead. Fingers crossed for the both of us
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hope your MRI went ok this week. was thinking of you. I’m still waiting for an appointment date with the consultant. it’s been cancelled twice already.
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Oh no, I can't believe you are still waiting. Hopefully not too much longer. The pair of us have had a considerable wait. My mri scan was on Wednesday morning, so far I've not heard anything but they did say results would be in about 2 weeks. I have no further followup planned with the consultant so hopefully they will call with the results.I've not been fitted with a hearing aid. It's helped with the tinnitus but not sure it is helping much with the hearing loss, but only had it for a week so must persevere.
I'm really hoping you hear something very soon, it surely can not be too much longer.
I was referred in Dec 2020 by my dentist for left sided facial numbness. I did have deafness/tinnitus in my left ear for about a year before but hadn’t connected the 2. Saw the oral surgeon yesterday who told me I have an AN and is referring me to Neurology. Fingers crossed it won’t be too long.
I have my operation in 2 weeks time, dreading losing my hearing and even more upset about the possibility of my face dropping, hoping they can save that nerve.
Hi Kimberry5, they delayed my operation it is supposed to be later in July but not 100% confirmed, it’s like the sword of Damocles hanging over me, I am getting stressed with it all. My numbness getting a bit worse in hand and face.Thank you for asking and hope all ok with you
Hi Kimberry Hope your op goes smoothly, I had a nightmare on Tuesday, my operation was all booked I did my lateral flow test 3 days before and on the day both negative , I had had covid on 29th June and was negative 3rd July, my call from Admissions came in saying op was on 19th July, I told them I had just got over covid, nothing was said and I was sent the info about testing.I had Pcr when got to ward and told nurse I had covid 3 weeks before and was pleased to have got it over with, blood test too, lovely staff, anaesthetic, shaved head, catheter, injection, cannula, breathing tube and everything…. I was woken up after an hour and a half in the OR and told my pcr came back that I still had covid in my system and they couldn’t operate as it would hamper my recovery and it should have been 6 weeks between operation and covid, the nurse didn’t take my pcr for checking until AFTER I was anaesthetised, and no one told me.
I felt dreadful for the surgeons, and all the lovely people but mainly also for myself, now another wait to get this wretched tumour done.
So please please check everything before your operation and let us know how you get on.
Hi Whiskas23,That is a nightmare mainly because you are mentally prepared for the surgery and you wake up to find out that it has not been done. Just hang in there, I hope you get your next date soon.
I hope it is. It's been 14 months since my GP advised it could be an AN and referred me to ENT.I've had my MRI so just waiting on results. The MRI department said 2 weeks for results which is this Wednesday 😳 but I have no further follow up planned with the consultant. He was very dismissive, he never said how he would get results to me. Your guess is as good as mine. Will leave it 3 weeks I think then chase his secretary.
As you say it's the not knowing which is difficult.
Hi hidden, just wondering how you are getting on? My experience of waiting from March 2021 until seeing consultant in May 2022 is similar. I then had scan (after getting back to Secretary)in July 22. Was seen quickly on insistence of GP.Have since had a nightmare trying to get scan with contrast as the consultant I saw said they didn't do scans with contrast(after waiting 10 weeks to tell me) so somehow the GP has again managed to get the contrast scan sorted(November 11th 2022).I have very similar symptoms and was told that the neuroma is only small(1.2mms x 7mm x8mm) on scan on July.
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Why do some AN grow quickly over a short period of time, could stress or hormones play a part? 
