I’m a 34 year old woman from the UK, who currently feels like I am being passed around to different areas of the nhs due to various symptoms. I have on going neck pain for a few years now on both sides but recently over the past 6 months I’ve have facial, jaw, throat and ear pain (a shooting type of pain) and also I have discovered a bony protrusion in my left side of my throat (where my tonsil used to be - I had a tonsillectomy 8 years ago) it feels cylindrical in shape and I get pain in my ear area when I touch it. I find my jaw pain is worse on one side and I occasionally get pins and needles in my chin. I also suffer from pulsating tinnitus and muffled hearing, balance issues and migraines with aura. I recently attended ENT who was very dismissive and couldn’t physically feel what I can feel in my tonsil area, he diagnosed me with neuralgia and a possible musculoskeletal problem. I was also referred to neurology due to my poor balance and had a brain mri which came back normal. I then saw a dentist to rule out any issues with my teeth and to see if they could feel the hard lump. The dentist could feel feel what I was on about but wouldn’t provide a cbct scan only X-rays and diagnosed TMJD/ Bruxium and a possible tonsil/salivary stone) I have had tonsil stones pre tonsillectomy, but none since. I really don’t feel this is a tonsil stone. I also have a very loud clicking jaw every time I open my mouth and I clench my teeth all the time. I sometimes feel like I’m being strangled and have a foreign body feeling in my throat when I swallow.
I have been back to my G.P who is referring me to maxillofacial because of my TMJ issues. ENT prescribed Amitriptyline for the neuralgia and said he would speak to me over the phone in three months. He was unwilling to offer me any scans to investigate. I’m reluctant to take the Amitriptyline as I’m worried it will make me drowsy and nauseous. I have my dental X-rays and was wondering if anybody thinks this is pursuing and if it could be my styloid causing my problems.
I’ll attempt to upload my X-ray below!
Many thanks Kelly
Well, your styloid processes are obviously visible in the panoramic photo on both sides… I’d say a CT scan would show them in more details, but even the x-ray is supporting this.
Thank you for your reply and editing my X ray. Sorry about the delay in replying, my post got temporarily hidden!
You have given me clarity that they are my styloids.
I’m really hoping I get some where with maxillofacial and they authorise some sort of scan to investigate. I would struggle financially to go private but may have to in the end. I imagine it’s a few hundred pounds for a private CT.
The ENT could well be right about the neuralgia, but as ES is a known cause of that, it’s frustrating that they wouldn’t look into this further!
Hopefully the Maxfac team will refer you for a CT, but the x-ray does show them anyway…the symptoms you describe are classic ES symptoms so it’s definitely worth pursuing!
The NHS dental clinic which diagnosed me were happy to refer me to Mr Axon, so maybe you’ll be able to get a referral to him too. If you do try to get that, make sure that you mention the pulsatile tinnitus as a symptom, as he does research into this so might be more inclined to see you! If this is an avenue you want to go down, it might not be worth paying yourself for a CT as he does like them done his way at Addenbrooks, I’d hate for you to waste your money. I didn’t have a CT before I was referred to him, I had the diagnosis from my panoramic x-ray.
I don’t know much about TMJD but many members do have this alongside ES.
Your left styloid looks pretty thick up at the top, to me & both look very pointed. Both these features can be significant in the styloids causing symptoms even if they aren’t exceptionally long. I also hope you’re able to make better headway w/ the Maxfac doctor!
Thank you for your reply Jules. Yes I was very upset when I left the ENT clinic, I have always been believed with my health and I felt very lost and embarrassed being turned away. I am lucky I have a supportive G.P and physio though, that’s something. I know this isn’t all in my head and not normal for me to be feeling like this. Thank you for the information on Dr Axon, you have been very helpful. I forgot to mention my dentist has recommended getting a bite splint made. Do you know of anyone on here that has had any relief from using one at night?
Thank you for your reply and clarity Isaiah. I am getting more and more certain it’s my styloids causing me my issues. Do you know if the pain level changes the longer they grow or is it completely different for everyone?
I think quite a few members have had the bite splints for night & have found them helpful, worth a try!
The pain levels with growth does vary, depending on the angle too, the styloids can irritate different nerves…as we age ligaments get a bit looser so that can alter the position of the structures in your neck- it’s such a small, cramped space that even a few millimeters shift can then bring the styloid into contact with different nerves/ blood vessels. But it doesn’t always mean that pain gets worse, people have flare ups but sometimes pain does go away for a while too. Some members have been able to live with mild symptoms & haven’t needed surgery…
That’s interesting. Yes I can agree with the flare ups. Some weeks are much worse than others. I find the nights particularly bad. I can never seem to get comfortable. Thanks for the info
Jules’ answer is perfect. Glad she got back to you in a more timely fashion than I could!
I’ll add that symptoms & intensity seem to be a bit different for each person. It just depends what’s being poked &/or compressed & is causing the symptoms.
I did find sleeping semi-upright helped, & of course the Amitriptyline as well as helping with the nerve pain did help me sleep better. No problems with drowsiness in the day, apart from the brain fog & tiredness with that…