Hi, I have been on this forum for a while, and have found it very supportive during this journey.
I suffer from mostly classic ES symptoms and some vascular.
I had a surgeon recently advise that ES ‘never’ causes ear pain.
My pain is mostly around my ear, behind and in front. When my tmj is playing up however because of clenching I sometimes feel a dull ache in my ear.
Does anyone suffer from ear pain or symptoms due to ES? Also, have these symptoms been helped by surgery? Thank you!
Yes and yes! Your surgeon is incorrect in saying “never”, actually it is a common complaint. An elongated styloid may grow right next to your inner ear along with the neurovascular bundle affecting all structures.
It definitely can!
The Trigeminal Nerve Mandibular division carries sensory info from the ear area, the Facial Nerve communicates sensations from the outside of the ear. The vestibular Cocholear Nerve has sensory functions around sound & balance, & the Glossopharyngeal nerve transmits pain signals from the inner ear- this is quite commonly affected by ES, & people often complain of ice pick pain in their ear. ( ES is one of the known cause of GPN) The Vagus nerve is also commonly affected & can communicate sensory info from the ear canal. These nerves exit the skull base close to the styloid processes, so depending on length, width & angle of the SPs can be affected.
After my surgeries, the cheek in front of my ears was numb/ tingly, & all up the outside edge. I also had a sensation of like concrete being poured in my ear after one surgery, & lost hearing in that ear, thankfully that improved after a couple of weeks, but shows how the nerves in that area can be affected!
Absolutely! It was actually my first symptom five years before I figured out what was wrong with me.
Thank you everyone for your responses and confirming what I knew!
I was just thrown off course when only a few minutes into the consult that I had waited for for almost a year due to covid I felt shut down because I said I felt pain radiating into my ear (among other symptoms). Where do you from there?
The whole reason of seeing this Dr is because he has dealt with ES. I could have accepted his suggestion of an alternative diagnosis but lost confidence when he said that ES ‘never’ causes ear pain. This was after he told me initially over the phone before seeing him my scans showed my styloids were long and it was likely I had ES but he wanted to confirm this when he saw me. Then when he did, he did not actually examine me.
Also I had a look today at the symptoms described by another patient of his who he performed ES surgery and how I came to find this specialist and he described having pressure in his ear! So how does that work?
What I don’t have is difficulty swallowing and constant throat pain. The other patient noted he had throat pain, as well as ear and jaw symptoms. Maybe this is why this dr may have felt it is not ES. I do have throat pain at times like when you have cold but this comes and goes and is not constant like my jaw/neck pain.
Who knows, but happy to know that my concern about this outright dismissal of ear pain as an ES symptom is not right!
I will keep you posted. Hard not to be put off when something like this happens and can be exhausting.
Vkossa,
The angle, pointiness &/or thickness of the styloid can influence whether a person has throat pain w/ ES. They styloids can also poke different areas as you turn your head so it’s possible your intermittent throat pain is positional.
By virtue of the fact you have elongated styloids you have ES. It is believed that many people have ES but no symptoms so they are never diagnosed. Your doctor is wrong to say you don’t have ES just because he doesn’t recognize the symptoms. The fact that you have elongated styloids & pain in an area they can affect is enough evidence that your styloids need to be removed. I really feel for you & am frustrated that you were treated so inappropriately after such a long wait.
As well as no difficulty / pain swallowing, I didn’t have the throat pain either! I had pain in my neck, especially if I’d had to turn it alot, ear aches, jaw ache, ear fullness & tooth pain. Later I developed vascular symptoms, but ES was diagnosed without the ‘traditional’ symptoms.
Mine too, terrible ear pain. Tinnitus, popping. It hurt all around my ear too, including into my eye. The only residual part is the tinnitus and that actually amplified and is constant now.
Thank you Isaiah and Jules for your kindness and support. Always helpful with your advice. I definitely have more pain with turning my head frequently.
Just tired sometimes with trying to find an experienced doctor with compassion and one who spends the time to listen.
I have booked an appointment with another specialist I have recently identified and hopefully this may be a better experience.
Hi Shayney, thank you for your message. Happy to hear that ES surgery at least helped with your pain, that is an excellent result. Sorry to hear that your tinnitus had worsened.
A friend of mine who suffered from tinnitus saw improvement with radically changing her diet and lifestyle. Not sure if this works for everyone but might be helpful to you. x
Hi Vkossa,
I’m so glad you’ve found another doctor. I will be praying that your appointment is the complete opposite experience from the one w/ the last ES doctor you saw. If you can, print off some of the research information that talks about symptoms, especially ear pain, in case that comes up in discussion again. Any research paper that lists symptoms you have is a good resource to have with you. 
Yes, hope that this new doctor is more helpful!
Thank you Isaiah and Jules, very kind of you and I will keep you and the group posted. 
Yes and yes is right. My first pain 5 years ago started with a sharp pain in throat and traveling up to intense ear pain. The ear pain has been a constant and just has varied from dull ache to severe.
I also have TMJ and be prepared for it to flair after surgery if you choose to get it. It doesn’t always flair but it can and it did with my 1st surgery in April. I just had my 2nd about 8 weeks ago. I had some crown work last week and my ear pain kicking up. Ill be getting a permanent appliance for the tmj shortly and I hope I can get everything to calm down. When you have both ES and TMJ it can get complex and difficult to manage.
Dont let a doctor minimize your symptoms. You know in your gut something is wrong. Follow your gut.
Thank you Snapple2020, I have been reading your journey and hope each day gets a bit more easier for you.
Your advise is spot on about following you gut! You’re right, we know when something is not quite right and often we doubt ourselves especially when you have something like this condition. This is what I was doing after my appointment. Reading your comments though bought the message home to me, so thank you and for all your support with this group. x
Yes I too suffered from ear pain, TIAs which originally I was told they were seizures, trouble swallowing, jaw pain and tinnitus as well as severe throat and neck pain,headaches, and tooth pain on my right along with TIA attacks because they impinged my carotid artery especially when I turned my head. Had my external left styloidectomy on 10-30-2018 and just had my right one removed on 2/9/2021…
Hi D907, thank you for your message. Your symptoms were quite severe and do hope surgery has helped.
How are you feeling now? Have your symptoms improved with surgery? I certainly hope so.
The last few days I have experienced swallowing problems which I did not have before except very rarely. I am having increased pain with my jaw and finding I am resisting swallowing due to severe pain in that area. I think this has come about because I have been driving a lot more recently in very busy traffic with turning my neck a lot.
How did you manage your swallowing difficulties because I’m not sure what to do. Sending you all my blessings and hoping you are recovering each day better. xx
Vkossa,
I also had swallowing problems as part of my ES symptoms. Mine were more in the form of choking when I swallowed than having extreme pain. This forced me to cut my food very small & take very small bites when I ate & sip when I drank rather than gulping down a drin when I was thirsty. That did help me. In your case it sounds more like it’s painful to swallow. If that’s so, you could try icing your neck for 10-15 min. periodically during the day to see if that helps.
I hope you don’t have long to wait for your next appointment.
Thank you Isaiah, will try icing as have always used heat packs. You’re right, Definitely coming from my neck I have realised.
Yes, looking forward to my appointment in March. Covid has made this harder for us with getting the medical assessments and treatments we need. xx
My ear pain started 8+ years ago ENT said my ear was fine. I caulked it up to my TOS. 2 years ago my disc in TMJ became permanently anteriorly displaced. Neck pain, jaw, and face pain I thought was TMJ and TOS. Not until the ligament became large enough to show up in my mouth has anyone been able to DX ES. I am hoping the chronic cough, sore throat, constant clearing of my throat, postnasal drip, GERD, are related. Dr. Cognetti couldn’t say for sure if the symptoms would go away.