Odd sensation to ear: Hi. I am still... - Acoustic Neuroma ...

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Odd sensation to ear

8 Replies

Hi.

I am still awaiting a diagnosis of an AN. I was referred to ENT in May last year, hopefully not too much longer to wait. My symptoms are left sided tinnitus and hearing loss.

Over the last 3-4 weeks I have started to develop an odd sensation to my left ear, almost like a tingling feeling. It's not painful, no discharge etc to make me think it's infection. It's not in my ear as in feeling like it's in my head it's kind of like on the opening of my ear canal if that makes sense.

Has anyone experienced anything like this? I'm not sure if I should update my GP with it. Or even if it is related to potential AN. I do also have a cough (non covid) that I've had for 6 weeks so unsure if it's just connected to that....

I'm just falling a part I think 🙃

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8 Replies
Lois_Howell profile image
Lois_Howell

You need to chase up the results, that’s a crazy long time you’ve been waiting. The tingling sensation was the only symptom I had of a quite large AN 17 years ago. It was surgically removed. I have continued to experience tinnitus and more extensive tingling almost numb sensation. It seems to have got worse in recent months. When I reported this to my GP I got an immediate referral to ENT and MRI was ordered. Both happened really quickly, less than a month but now I’m waiting for the results.There’s a 1 in 20 chance it’s grown back. Has any one else experienced regrowth and/or is it common place for routine follow up MRI to check on this?

in reply toLois_Howell

Thank you for your reply. It is a ridiculous long wait. I called the hospital to enquire 2 weeks ago and they said it would be about another 8-10 weeks. Hopefully not much longer.Was your tingling sensation in your ear when all this started for you? I have no problems with facial paralysis etc.

Im sorry to hear you may have some regrowth, hopefully you get your results soon.

Rogerthedodger profile image
Rogerthedodger

Hi, which hospital have you been referred to? Have you not even had an outpatient appointment or a scan yet? Hope you get seen soon

in reply toRogerthedodger

I have had nothing at all yet. I received a letter from the hospital about a week after referral to say I'm on the waiting list. That's it. I will need to see the consultant first who will order an MRI according to my GP. Local waiting lists are fairly hectic around here, and it just so happens ENT are the longest unfortunately.

Rogerthedodger profile image
Rogerthedodger

I would strongly advise you to make at call to PALS (Patient Advice and Liaison Service) at your hospital and ask them to investigate for you. I did that, stressing that it was not a complaint but a request for information, and they got back to me with updated information.

Bad1 profile image
Bad1

Hi, it’s so difficult to know if your ear sensation is connected to your other symptoms without a diagnosis. I have a small AN but also have other noises and sensations in the same ear however this is due to a blocked tube Which connects to the throat as I also have rhinitis. Diagnosis is all about exclusion. If you went private you would have an instant answer! I would recommend that you speak to your Gp to chase up the referral as waiting is very stressful. I use menthol crystals to reduce pressure in my ear when it is blocked by fluid. This does not of course get rid of the An symptoms but I have noticed that tinnitus is more noticeable when I have a cold or congestion .

flappers profile image
flappers

Hi Kimberry5! Your GP can ask for an MRI, mine requested one and I got one within a week with the results 2 days later (my GP rang with the result) Get back to your GP with your worries and new symptom and ask for help escalating the MRI, for no other reason than you feel as though you are falling apart. Waiting is AWFUL! I do hope it is easily resolved for you and you do not join our AN club, but if you do, there really is a lot of helpful support out there from BANA and it is something that won't kill us, just becomes part of our ongoing story!

in reply toflappers

Thank you for your reply. Unfortunately where I live GPs are unable to request MRI scans directly, it has to come from a consultant. It all changed about 5 years ago. I'm not feeling too bad at the moment so happy to wait my turn. It will come eventually.

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