Hi everyone
I’m 9 weeks post surgery for ACC and my hearing went in one ear 4 weeks ago and this last week my swallowing seems to be getting worse. I thought I should be ok by now?? Tried popping my ear and had popped a couple of times (hurts when it does) but lately unable to pop them. It’s driving me nuts and my family as I can’t hear them ?
The whole area inside/outside remains numb since surgery.
any advice would be appreciated
thank you
Hi Elaine it might just be inflammation and scarring but all of us are asked to report anything that’s worrying us so it might be a good idea to contact your CNS. At least your surgeon would be able to put your mind at rest. My team has never complained about seeing me out of my normal appointments
Best of luck.
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
Hi Elaine Has Dani has said contact your team. My e n t consultant says to me every time if you need time seen between appointments get in touch.
good luck Hazel
Hazel aka RadioactiveRaz
My blog is www.radioactiveraz.wordpress.com HPV 16+ tonsil cancer Now 6 years post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help
2 videos I’ve been involved with raising awareness of HNC and HPV cancers
Hi Hazel
Thats good. I had my op in a regional hospital and my follow up is in local hospital , awaiting to be seen by oncologist. 9 weeks post op so not 100% sure who will follow me up? I will check with Macmillan nurse
thank you
Elaine
Hi Linda
im sure it’s nothing I’ve no fever it’s just annoying that it’s not getting better. When I saw the consultant he gives me the impression that I’m moaning over nothing and anxious. Feels a bit like he’s done his job and I must just get in with it. I suppose it’s true really but didn’t expect it as bad as it is. I shouldn’t moan as many more in much worse situation than me.
thank you
Elaine
Hi Elaine in my case i was referred back to ent at my local hospital. I was treated at a regional cancer centre where I saw my oncologist but has you can imagine they are busy with new patients so at my trust you go back to local ent. I was seen by oncologist up to my pet Ct scan now see him once a year.
Hazel
Hazel aka RadioactiveRaz
My blog is www.radioactiveraz.wordpress.com HPV 16+ tonsil cancer Now 6 years post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help
2 videos I’ve been involved with raising awareness of HNC and HPV cancers
Hi Dani
it sounds like your team are great and very supportive.
on the times I have said anything I have felt like I haven’t been listened to and I need to crack on with what I have. They did do a post op mri which was ok but they didn’t seem too bothered about my hearing or discomfort, didn’t even look and advised me to ask ent to look in my ear when I next visit my local hospital, been deaf for 4 weeks now with tinnitus.
also still waiting to see a speech therapist, care transferred from regional hospital to local and now on a waiting list to be seen, 9 weeks post op. I think it seems a bit poor to me although I do understand the pressures of the NHS. Had to Google mouth and jaw exercises as the leaflet I was given by tge specialist didn’t really say much.
Thanks anyway, sorry seems like a moan
Elaine
Oh ok, yes I see.
I just had the surgery (maxfax) at the regional hospital and oncologist at local. I assume I will stay under local care afterwards.
thanks
Dint worry about moaning. You fire away. There seems to be quite some inconsistency between trusts doesn’t there.
The was mention of me being moved back to my local hospital and I was going to say that if it was ok with them I’d rather not but it never came to anything.
It’s a bit sound destroying having to be so proactive considering what you’ve been through. There’s always PALS to get things moving.
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
Actually Elaine, it all sounds pretty rubbish to me.
I've been treated at the same hospital from diagnosis and I've been lucky to have been referred to physio, speech and language etc promptly.
I understand the impression you're left with is that the consultant feels he's done his job and therefore, provided you remain cancer free, his job is done but if you're in a lot of discomfort the least he can do is ensure you get some help from relevant departments.
I was thinking along the same lines as Dani in that if you don't feel you're getting anywhere you should maybe consider contacting PALS.
I do hope you get some appts soon. All the best.
Linda x
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