Morning, It’s six months since my Radiotherapy and I have the following side effects hanging around I wonder if you can help with your experiences if they improve or can be fixed?
Complete Hearing loss and loud tinnitus in one ear treatment side) Waiting on ENT as hearing aid no longer works)
Facial numbness treatment side
Fatigue (unable to regain fitness)
Dry eye
thanks
I am on watch & wait and hearing aid still works. I would try to get a cancellation apt. I know NHS apts long wait times but really.... Good luck.
Sadly, I suspect that the hearing aid works perfectly but your ear doesn't. You will probably need to have a cross aid or a BAHA now. What sort of Radiotherapy did you have and where? Facial numbness is very unusual 6 months afterwards.
Hi thanks for your reply, I had one blast in June of radiotherapy to the tumour (25mm) and the right side of my head / face is affected. I was hoping a device of some kind would give me some hearing back but from what the NHS have said looks unlikely 🤷🏼♂️
The NHS will provide you with a Bone Anchored Hearing aid in due course if you press them for one. Everyone who has one thinks they are wonderful. I don't have one as I have managed so far with the single sided deafness. I do however use bone conduction headphones for listening to stereo music.
Hi Dutch! I’m 7 months in from radiotherapy ( 3 sessions over 5 days for a 25mm squatter) and I really recognise some of what you are going through. Re fatigue, I found eating little and often and drinking a lot of water helped with very heavy dragging myself through treacle feeling and heavy head… and about 4 weeks ago, it must suddenly lifted. I hadn’t realised how very tired I’d felt until it lifted! But we all have different responses, just know it will get better!
Re heating and tinnitus, hopefully you’ll get help via audiology, keep asking them for help, cross aids or even Baha maybe if hearing has gone altogether. I have had gradual hearing loss so although it impossible to distinguish what is being said, I have somehow adapted to it, and finding it easier than I did a year ago. I’ve had some acupuncture and physio on the nhs and via Brainstrust have fantastic hypnotherapy sessions and support groups for those of us with ANs. I’ll be missing those for a month though because I’m about to go to Thailand for a month. When I booked it I thought I’d be unable to do anything other than lie under a tree with a book, but suddenly I am looking forward to all sorts of adventures, such that were inconceivable a few months ago. Be gentle and kind to yourself, our brains have been though a LOT and you need nurture and rest. It will get better. Lin 🤗
Hi Dutch I’m afraid that sounds about right. The radiotherapy is great at arresting the growth - if it works - but won’t take it away. I found the symptoms generally got worse including my face contorting if I tried to look in a mirror or bend over a sink to wash my face. I am three and a half years in now since radiotherapy (July 2019) and still deaf in one ear, tinnitus and numbness in my face. My last MRI, March 2022 showed the tumour is beginning to stabilise so hopefully this March will reflect the same picture. Apparently the post radiation swelling is all about the cells taking on fluid rather than growing as such. I find when I am run down or unwell the symptoms are very evident as well. One thing I don’t suffer from fortunately is headaches- though some bouts of nausea associated with it.
Stick with it. It’s got to be worth a try rather than permanently cutting the facial, hearing and balance nerves.
Best Wishes
thanks for your message, it’s good to know what’s ahead as well as what is happening now is the new normal 👍
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