I just realised I put my scans on here back in 2018, and you kindly commented on them then, I didn’t realise my past posts were still here. So apologies to be asking for advice again - but I’d welcome any further information it having been a good few years ago.
I hope I’m posting this in the correct place.
I had my elongated styloids diagnosed in 2018. I didn’t have any pain at that time and only found out about having elongated styloids because of noticing a lump near my right tonsil. Following getting advice from you kind, generous and highly knowledgeable people, here, at Living with Eagle, I managed to get an mri, and a referral to Mr Axon.
I saw Mr Axon in 2019 and he reviewed my scans and physically examined my right styloid. It was decided that no further action would be required as I, luckily, wasn’t experiencing any issues.
That’s until recently, following a virus, I have, for the last few months, been experiencing intermittent pain and discomfort in and around my right ear and throat. It feels like there’s a lesion somewhere in the region where my right ear canal and throat meet.
I know I’m lucky to be in the position I’m in having already the knowledge of having elongated styloids and have already had contact with Mr Axon, but I would very much appreciate it if you could give me any advice on my situation and my scans, here are screenshots I made in 2018, unfortunately I don’t have a disk drive so can’t access the disk at the moment.
My thinking is I’d be best to monitor the symptoms for a further month and if not subsided then try to get a referral back to Mr Axon.
Thanks for reading and I welcome any questions / advice.
@SKC100 - Welcome back! No worries about starting a new discussion thread! Many of us have started a number of different discussions.
I’m sorry you’ve had to come back. Your styloids were VERY LONG back in 2018 & I’m honesty quite surprised they weren’t causing you any problems. What a blessing that they weren’t back then!
It is known that styloids will continue to grow over time, & possibly thicken as well, so it was likely just a matter of time before yours began to be symptomatic. I’m glad you saw Mr. Axon initially though some things have changed for him with regard to whom he is able to help in the ES patient group. He will absolutely be the best possible place for you to start, but should he decline to help you, we can suggest other doctors in the UK who are also familiar & experienced w/ ES.
Your plan to wait a few months to see if your symptoms subside is good, however, ES symptoms do tend to come & go w/o particular provocation once they’ve started so don’t be surprised if you notice that happening. I hope for you, that they do go away given a bit more time. As you wait, you can try icing your neck for 15 min. every couple of hours if you’re able to. Gel ice packs work best because they easily conform to the shape of the neck. Using a thin washcloth between ice & skin will help protect the neck from ice burns.
Please keep us updated as to how things are going for you over the next weeks/months.
I agree with @Isaiah_40_31 , that they are very long styloids!
Mr Axon isn’t able to do as many ES surgeries now on the NHS, not sure if you saw him NHS or private? He’s got a very long waiting list too… @Warrick posted symptoms which he’ll consider as ES but I can never find that on here!
If you are wanting to see him on the NHS then maybe get a referral now as with the wait things could have got worse by the time you see him, you can always cancel the appointment if it’s all okay by then…There are risks with the surgery though if you were able to get offered it, so that’s worth considering, if you’re in alot of pain then the quality of life with the styloids in outweighs the risks, but if it’s just annoying every now and then perhaps it’s not worth the risks…
Thanks that good to hear, since I posted I have had a reduction in symptoms, so I’m going to have a think and work out what my next step would be. I really appreciate all your advice.
