Parotid gland

Hello Marg06

I see your post has not yet had a reply so am hoping by responding it may be seen again and that someone who has gone through parotid gland swelling will see  and offer support. I am sorry to see that you are experiencing so much pain and swelling.

In the mean time I have had a look on here and it does seem to be something that happens to some people after RAI. It is reassuring that you have contacted your GP and spoken to your CNS and that it is not something unexpected. Was your CNS able to offer any advice at all? If not maybe you could contact again and say that it is really painful and you need support relieving it, especially if it could last for up to a year. You could ask about whether there is pain relief available or if cold compresses may help or if there is anything else that they could advise.

Another thing that may help is if you go to the thyroid forum and go to the search bar at the top- you can do a search for parotid gland swelling and then if anyone else has posted about similar you will see the replies and what maybe helped them.

Hope this helps

Jane

Thanks for responding Jane. Take paracetamol and massage was the advice. It’s gone down slightly so I’m hoping that will continue. If it’s still troubling me next week I’ll return to GP. Thanks for the advice I didn’t realise I could search!!

I hope that it does settle soon- it sounds really uncomfortable

Fortunately I haven't experienced this and don't want to @Marg06 but will be having a second higher dosage in the coming weeks, so who knows.  I have heard from others who have experienced this and said how painful it can be, and the advice seems to be to massage around the gland areas, stay hydrated and suck on boiled sweets or something to stimulate the glands.

Hi Petal66 

thanks for responding. Yes it’s horrible, it’s been over a week now. I’ve tried everything you mentioned, it swells up hugely if I eat so trying not to eat much. I hope your next round of RAI doesn’t include this too 

Hope it eases for you soon @Marg06.

Hi. 

In my case 10 months after RAI I still have occasional swelling of salivary glands and pain. Paracetamol and hot compress helps. My oncologist said it cannot be RAI as it was so long ago BUT I do not agree - I am almost sure it is that that caused my problems. To be honest once I was prescribed antibiotics for it but it didn't help whatsoever so was just waste of time. It went down by itself after few weeks.

I hope it will settle for you. Take care x

Hi

Your conversation with the hospital sounds the opposite of mine! I was saying that it couldn’t possibly be RAI because it was so long ago and the nurse said up to a year. It’s very frustrating, 3 days before it started I’d had my scans and tests for the end of treatment and up until now my recovery has been wonderfully uneventful. I now look like a chipmunk on one side of my face and paracetamol doesn’t touch the pain and I’ve not bothered with antibiotics as there’s no sign of any infection. Thanks for your response - I feel less isolated now. How are you doing?

Hi again. 

That is really worrying that doctors that should treat the same disease have different views about the effects treatment have on us. 

I just had base scan done and bloods as well and all looks well. However in November all was supposed to be well also and now I am after second surgery so don't really want to be optimistic this time. I feel much better now with myself and most of the pains I've had after first surgery are gone and I am trying to go back to the life I've had before as much as it is possible. 

Take care x

I’m craving some normality too! Hope your results go well x