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ear pain and intermittent throat pain
I am currently diagnosed with trigeminal neuralgia. I have had ear pain since 1995. I also have a glossopharyngeal cyst. More recently I have had pains in my throat, which does not coincide with the ear pain. I do have inner ear pain when I swallow, and talk. . Also bouts of tenderness on my scalp. .A few years back I had a ACDF for Klippel-Feil Syndrome. I am wondering now if I have been diagnosed incorrectly as I understand that happens frequently. Any insight would be appreciated.
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Hello @vickieb876, welcome to Connect. You mentioned being diagnosed with trigeminal neuralgia, here is a discussion you may want to check out, https://connect.mayoclinic.org/discussion/trigeminal-neuralgia-2273cc/. @vickieb876, if you don't mind sharing a bit more, what are you specifically wondering about if you were misdiagnosed? The trigeminal neuralgia, or Klippel-Feil Syndrome?
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1 ReactionA year ago I started having an earache that I thought would just go away, but after a few days it didn't, so I ended up going to Urgent Care because it was keeping me up at night. They gave me an antibiotic and a steroid to take and after I finished that, I still had the same ear pain. At this time, I also started having a sore throat. And after a few weeks of it I went to see my primary doctor who put me on antibiotics, which again did not help. To make a long story short, I was referred to an ENT who looked in my throat and ear and said everything looked fine but wanted me to have a neck CT scan just to be sure. The neck CT scan didn't show anything on the left side where I was experiencing pain but did show a large thyroid nodule. So things kind of got sidetracked and I ended up being referred to another ENT to get a thyroid ultrasound and biopsy. The biopsy ended up benign thankfully, but I never got any answers on my sore throat/ear pain. The ENT suggested I might have acid reflux and put me on meds for 6 weeks but it didn't change anything.
Toward the end of 2019 the ear pain and sore throat kind of subsided and wasn't bothering me anymore, until around Christmas when my throat got really sore and I went to Urgent Care and they prescribed me antibiotics. It got slightly better but then in January I started having ear pain again. I went to the doctor two weeks ago and was told that my ear looked red and she said it was an ear infection and put me on antibiotics. Well you can guess that the antibiotics didn't help and here I am again with throbbing ear pain that sometimes is a shooting pain towards my throat. Sometimes it feels like a knife or something is being shoved into my ear and twisted. It is only on the left side and at this point I am just stumped as to what to do next.
I still have my tonsils and I know that they really don't remove them much anymore but I have a bad feeling that there is something wrong with my left tonsil. The roof of my mouth towards the left side is always sore and when I touch it with my tongue it feels tender. When I put my finger to the roof of my mouth there is a hard lump towards the left side that is very tender. I had mentioned it to one of the ENTs and he said that is part of my tonsil, but I'm not sure? Also, under the left side of my jaw, it is always sore when I press on it, and it's been sore like this since last March.
I'm just not sure what to do at this point because it seems like doctors just want to either put me on antibiotics or reflux meds and none of that has helped. I'm 39 years old and I used to be a heavy smoker but quit almost 8 years ago so that is always one of my worries, that it could be something serious because of smoking. I have another appt to see a doctor this afternoon for my ear pain but I'm afraid he's just going to put me on antibiotics again. I've considered getting an appt at Mayo in Rochester because I'm not sure where else to turn. I live in Iowa so Rochester is about 3.5 hrs away. Has anyone experienced ear pain or a sore throat like this?
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3 ReactionsHi, @amandabanana80 - welcome to Mayo Clinic Connect. I wanted to let you know I moved your post on ear pain and soreness in your throat here to an existing discussion on a very similar topic so you can talk with @vickieb876 about your symptoms. I've had ear pain this last 1.5 weeks, and I can't imagine having this over a long period of time. Boy, does it hurt, and also distract.
I'd also like to invite into this discussion @imallears @lioness for their thoughts on the lingering ear and throat pain. Since you mentioned a concern over any ill effects from previous smoking, I'd also like to invite @merpreb and @littleonefmohio into this discussion. @alpaca also has a lot of familiarity with the head and neck region from her own experiences and those she's connected with online, so may have some thoughts for you abour the possible status of your tonsils and not getting anywhere with antibiotics for your ear.
What happened with the doctor you saw this afternoon, amandabanana80?
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1 Reaction@amandabanana80 Welcome to connect we are caring people and try to help with our own experience .I had ear pain,throat pain on one side it lasted over a month I was in urgent care 3times they took swabs of my throat but it wasn't strep.I saw my Dr she said it was some kind of virus ,others who had the same symptoms told her that the amino acid L Lysine cleared it up so I bought a bottle ,only took 1for 3 days and felt better the ear and throat pain where gone so when I feel some throat or ear pain I start on the L Lysine again Hope this helps.Lioness
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2 Reactions@amandabanana80- It must be so frustrating to have pain that no one seems to know how to get rid of. It doesn't sound as if you are getting any helpful solutions so far. If you have a mind too I would encourage an appointment at Mayo. Going on and off antibiotics is not a great idea. I am a former smoker and I would encourage you to get a CT scan of your chest to rule out anything that could be causing your problems. Do you know how to get a hold of a physician at Mayo?
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1 Reaction@amandabanana80 Hi,
I have a very similar story other than the thyroid nodule and I was never a smoker....
After yrs of no answers for anything, I was finally diagnosed with Eagle's Syndrome and Trigemanal Neuralgia.
Unfortunately, the ES is often missed in imaging. The majority of dr's are very unfamiliar with it or simply dismiss it as not being a real issue.
There's an Eagle's Syndrome group on here that you may find helpful.
Continue to be an advocate for yourself! You know how you feel and that your pain is real!
I'm sorry dr's keep pushing antibiotics on you without a known infection being the cause. That isn't helping anything:(
Definitely check out info on Eagle's Syndrome, all of your symptoms are very fitting. And your random, stabbing ear pain cld certainly be an irritated nerve.
I describe mine as being stabbed by an ice pik in the ear, face and eye. And I feel like I have a never ending case of strep throat but it's all mostly on the right side.
The majority of ENTs give the "oh, it's just acid reflux" and want you to take pepcid or zantac. It's a very frustrating journey but there has to be help somewhere with the right dr's.
Good Luck!
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2 ReactionsHere's is the Mayo Clinic Connect discussion that @jenlink is referencing https://connect.mayoclinic.org/discussion/eagles-syndrome/.
The National Institutes of Health (NIH) has some helpful information on the syndrome she mentioned, also, is this is something you'd want to ask your doctor about https://rarediseases.info.nih.gov/diseases/9401/eagle-syndrome
@jenlink- Good afternoon. When you say the right doctors what type of doctors are you referring to. ENT's seem to have dropped the bucket so far.
@merpreb The right dr's are ANY dr's that even know what Eagle's Syndrome is and with any luck, have actually treated it.
Because of its rarity, it's extremely difficult to find help:(
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1 Reaction@jenlink- I remember hearing about Eagle's Syndrome but never knew what it was. I do now, sort of... From what I gather it is indeed very rare and very difficult to diagnose. It is an elongated styloid process. The length of the styloid process is usually 2–3 cm [2]. When it is more than 3 cm it is called an elongated styloid process, and it can cause pain in the throat, difficulty in swallowing, foreign body sensation, carotid artery compression syndrome, etc.
https://www.medicalnewstoday.com/articles/321946#treatment
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4439650/
I am trying very hard to describe this disease but I am not a doctor. "Eagle syndrome is most commonly seen after the age of 30 years. There is no significant sex predilection in the occurrence of mineralization of the SP; however, symptoms are more common in females.[8] Eagle's syndrome is not frequently suspected in clinical practice. The symptoms in Eagle's syndrome range from mild discomfort to acute neurologic and referred pain. These may include: Pain in the throat, the sensation of a foreign body in the pharynx, difficulty in swallowing, otalgia, headache, pain along with the distribution of the external and internal carotid arteries, dysphasia, pain on cervical rotation, facial pain, vertigo, and syncope.[12,18]
The styloid process is a thin, elongated, cylindrical bony projection that is situated anteromedially to the mastoid process. Its length varies from 2 to 3 cm. Posterior to the styloid is the facial nerve, which emerges from the stylomastoid foramen. Medial to styloid, moving posterior to anterior are the internal jugular vein (with XI, XII, X, and IX cranial nerves) and the internal carotid artery. Medial to the tip of the styloid process are the superior constrictor muscle and the pharyngobasilar fascia, which lie adjacent to the tonsillar fossa. Lateral to the tip of the process is the external carotid artery that bifurcates into superficial temporal and maxillary arteries. The stylohyoid ligament extends from the styloid to the lesser cornu of hyoid bone.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4379291/?_ga=2.36630178.326493342.1582377355-517597283.1582377355#!po=31.8182
Are you seeing a dentist or oral surgeon or head/neck surgeon?
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