Tongue, base of tongue, ear

Hi everyone, many thanks for accepting me into this supportive community.

I’m hoping someone can tell me if this sounds familiar. For the past 3.5 months I have had bad pain on the left side of my tongue, base of tongue, and now ear, and even a strange sensation around my left eye. It never goes away completely – and I think the pain wavers between 1.5/10 to 6.5/10. The base of my skull has been slightly tender for as long as I can remember. I remember a chiropractor saying something about “spurs” on my neck back in 2015.

I don’t yet have a diagnosis and am currently scrambling to get information to help expedite a solution. My family doctor is extremely passive. I did see an ENT, who ordered a CT scan, which came back clear. Now I’m trying to get my family doctor to get me an appointment with a neurologist, but this could take many months. Does anyone have any suggestions at all?

Thanks in advance for any support or advice. Wishing you a pain-free day.

Hi Canada2018!

Welcome to this wonderful forum! Your symptoms do sound like symptoms that ES causes but there are other ailments that have symptoms that mimic those of ES. Do you know if your styloid length & stylohyoid ligaments were checked when the CT scan was read? ES is defined as elongation of the styloid process(es) or calcification of the stylohyoid ligament(s) or a combination of the two. Additional helpful info is that it’s not always the length of the styloids but also how thick they are (even if not elongated) & at what angle they’re growing. A normal length but very thick &/or steeply angled styloid or a heavily calcified ligament present w/ a normal styloid process can all present ES symptoms.

There is a Newbies Guide under the HOME tab above with lots of information. If you haven’t discovered it yet, take a look.

Sadly, from what I’ve read on this site, Canadian doctors don’t have a great reputation for diagnosing or being aggressive about treating ES. You will have to advocate for yourself by being well-informed & armed w/ documented evidence i.e. papers from scientific journals to make your best case no matter what you may think you have. There are links in the Newbies section to many good papers that will help you understand ES better & maybe also determine how to proceed to a proper diagnosis.

:slight_smile:

1 Like

Isaiah_40_31, thank you so much for this information. I will check out the Newbies forum shortly.

Wishing you a pain-free day!

Hi! Have you had any luck? I’m in Alberta and am still waiting to see the ENT that i was referred to. My dentist diagnosed me with a PAN X-ray after so many years of wondering what was wrong with me! All doctors concur that I have Eagle but I am still waiting as it is not “urgent”. I’m not even sure that the ENT can help/ if he’s familiar with this…I’ll have to wait a bit longer I’m afraid!

Hi Diasy,

Still no diagnosis. I still have the pain on the left – top of throat, back of tongue, etc., plus now I also have a sensation all over my tongue that comes and goes throughout the day, alternating between burning, numbness, which match Burning Mouth Syndrome descriptions but BMS wouldn’t explain my other symptoms. Apart from many visits to my (passive) family doctor, I’ve also seen two ENTs, a neurologist, laryngologist, speech pathologist, dentist, oral pathologist, periodontist. I’ve had a CT scan (clear; showed some calcification of the styloyhoid but the ENT said it’s too short to be Eagle’s), a brain MRI (clear), and a jaw MRI (showed mild degeneration of my left jaw plus anterior displacement of the jaw disc). A facial pain dentist thinks it’s the jaw that is causing the pain in the tongue, ear and jawline, although the other doctors don’t seem to think so. So far they said they don’t know what it is.

Remedies offered so far: The facial pain dentist gave me a soft night guard two weeks ago; this seems to have really helped with the ear pain, but the tongue pain remains. I have been taking 600 mg gabapentin per day, plus 10 mg nortriptyline per day; these meds seem to have taken some of the edge off the pain. The oral pain dentist suggested I also take a low dose of clorazepam to help with the jaw and tongue, but the neurologist doesn’t agree (for now).

I have an upcoming appointment with a TMD/TMJ clinic and apparently they do panorex x-rays there. I intend to ask them about Eagle’s. Whenever I think this is related to a mechanical issue (TMD etc), my anxiety is reduced. When I’m lost in ruminations that this is something else, I get quite distressed and it makes the perception of pain worse. I am really beginning to understand the true importance of being in the moment, mindfulness, positivity, and am going to try meditation.

Please let us know how things go. Sending positive healing thoughts your way!

& the same to you too! Hope that you can get some answers, but at least it sounds like there have been a few steps forward in managing your pain… A solution of bicarbonate of soda has helped me when I’ve had burning mouth, have you tried that? (you can google it to find out how much bicarb to use) Bear in mind when they’re looking at the x-ray that it’s not always the length of the styloid process which can cause pain, but the angle it’s grown at too. Best wishes!

Hi Jules, it’s so interesting that you mention bicarbonate of soda (or baking soda, as it’s called in North America). That is exactly what I’ve been using for a little while now right after brushing my teeth – I just did it instinctively, since it seemed that any toothpaste caused the burning tongue sensation to increase. Did you happen to come up with the idea on your own too, or is there a reference to it somewhere in relation to tongue pain/burning?

Incidentally, an update on my situation: I still have the pain on along the left side of my tongue, back of tongue, sometimes ear, sometimes upper molars, sometimes a strange sensation at left of my chin and along mandible – all on the left side. In addition to that, I have the burning/numb/painful sensation all over tongue, upper palate, back of throat, although this comes and goes. Still no answers despite many doctor’s visits and still taking the gabapentin and nortriptyline. I’ll return with updates. Many thanks, Jules, and everyone!

No, I read up about BMS & it was mentioned as a possible help… I tried it & it did help me. Not as clever as you doing it yourself!
Have you talked to your neurologist about trying any other medications? There are quite a few others which might work better for you if yours don’t help at all?
There’s a Ben’s Friends Facial pain group which has really good info about medications- you could have a look at their site & either join or just read the info if you’re interested, here’s a link: http://www.livingwithfacialpain.org/
Keep us updated!

1 Like

Thanks so much, Jules. I am on that forum too. It’s so nice to have support and wisdom from others (including you) – I can’t imagine trying to deal with all this mystery completely on my own! I’ll keep you posted, and will look out for updates from you too.