Ongoing difficulties

Hi Mo

I haven't had to use any mouth spray but Hygienist Jocelyn Harding who deals with many HNC patients recommends a simple water spray. This moistens your mouth without washing saliva away. Apart from that I use Bioxtra mouthwash and they produce a mouth spray which tastes very pleasant.

Re deafness. Lots of people report fluid in their ear which does get better. I too had 30 fractions of RT and I have lost high end hearing in that ear. It's permanent but I can live with it. If you can get an appointment with an audiologist (Specsavers is easy) you can find out whether your loss is conductive (fluid) or sensorineural (cochlear damage)

Thankyou Dani. I already had a test at last ENT appt & he said it’s fluid related & to give it a chance to clear on its own as he’s reluctant to put a vent in. I’ll maybe try just spraying with water first & if that doesn’t work try a gel spray. Thanks again. X

Hi there.  I was as deaf as a post for months.  One ear cleared and then the other. My consultant said it was fluid because everything is a bit blocked up after RT.  My hearing is totally fine now.  All the best.  Lizzie 

Hi

I'm 22 months post treatment. I still have a dry mouth but not as bad as it was. I found auricular acupuncture helped a bit.

I use Boots Expert Dental dry mouth spray but only occasionall now.I can't stand any of the others that I've tried as I find them too slimy. I don't find a water spray helps me either unfortunately.

I too have shoulder problems. My right shoulder is very painful (makes me feel sick as well)when I reach too far to the side, behind my back or up above my head. I've been bounced around various departments at the hospital, but most recently ended up back with Physio who are currently working on a diagnosis of an inflamed shoulder capsule, possibly secondary to some neck fibrosis caused by RT.  I've got some exercises to do which I'm hoping will sort it out, as it's quite limiting as well as flippin painful!

Best wishes and fingers crossed for improvements

Oh that’s reassuring. Thankyou so much Lizzie.x

I didn’t even think of issues like that when I started treatment. Good to know I’m not on my own. I’ll maybe mention it at my next appt & see if physio available. Thankyou.x

Hi Mo

I use either Biotene or Oral7 mouth spray but find that the Biotene or Oral7 mouth gel works better as long as you only put a dab from a cotton bud on your tongue so it doesn't get too gluggy. I can buy these products over the counter at my local chemist, however as I live in Australia it may be different for you. In the past I have found Xylimelts work really well too and I also could get these over the counter. They are also available on line through Amazon.

I am currently using the mouth gel particularly at night when my seems to get really dry. It really does make a difference for me.

I do take sips of water but find that does not work as well as the gel.

I  had complete deafness in my left ear after my op in 2019 due to fluid. My surgeon put a grommet in and this cleared the fluid really quickly and I have had no issues with it since.

Lyn

Hi Mo. I also had 30 RT for tonsil, lymph and some SCM muscle infiltration. Treatment ended 8 weeks ago. I’m recovering quite well but struggling a bit with dry mouth. I’ve pain across both collarbones and trapezius muscles, worse on untreated side. This is as you say when moving arm away from body. Pre-existing tinnitus in one ear has got a bit worse. 

I had my first follow-up last week. The oncologist said the musculoskeletal symptoms are probably just due to the radiation. He advised against physio just yet but said returning to swimming was a good idea, anything to keep the arms and shoulders moving. He said ibuprofen and paracetamol were fine to use. Returning to pregabalin was an option if pain was really bad but this would be a backward step.

Thankyou Sophie.

Thankyou Mark. Yes, I have the old tinnitus too.   I’m waiting to be called for the results of my scan so I’ll bring all my woes up then, lol.