Persistent ear pain , jaw pain , throat pain , neck pain ,sholder pain over 1,3 years

General
1

I am male 40 yrs old from Romania. My english is not so good so please excuse misspelling.

Since June 2016, I felt a diffuse pain in throat on the right side.
The pain was DAILY only on the inside of the pharynx at a fixed point and in the right amygdalian fossa espacially when rotating head to the rihgt.

I was ok in the morning but after 1 PM symptoms come back every day.
On a scale of 1-10, the pain felt about 2 - 3.

Julay 2016

I was consulting an ENT and he said I had a chronic pharyngitis and gave me some blood tests to do. All blood tests were good including ASLO VSH CRP

The pain persisted, I have been to countless ENT controls but nobody has detected anything wrong except for an alleged chronic pharyngitis.
I did 5 fibroscopies, 4 MRIs, 1 angio-MRI HEAD, 3 Cervical MRI.

Symptoms have worsened and throat pain inducing paraesthesia in the mandible, neck, ear on the right, shoulder and neck on the right side.
Also paresthesies at the tongue level.

Symptoms worse when I turn my head to the right and seems to come from the right tonsil or right inside the tonsil.
Also, the right tonsil is swollen at the top.
All exudates i made, the results were negative.

I have not discovered any factor that would trigger these states, nor any factor to improve them.

MRI found bilateral small enalrged reactive laterocervical lymph nodes .

OCTOBER 2016
In October 2016, a submandibular palpable swollen lymph node appeared on my right side followed in December 2016 by a palpable swollen lymph node at the jugulodigastric level on the right.
I followed treatment for 10 days with antibiotics: Zinnat, 7 days with amoxicillin, 5 days with sumamed. The pain in the throat did not disappear and the lymph nodes remain swollen.

JANUARY 2017
Paresthetic sensations have begun to improve, but the right side throat pain is very pronounced.
I was reffered to a neurological consultation where I was sent to the psychologist.
Following my consultation, I was prescribed Lorazepam and Xanax . Xanax did nothing but all my pain was gone with Lorazepam only 1/2 pill 0,5 mg .
I was also told that swollen lymph nodes should be investigated in hematology, not the psychiatrist.

MARCH 2017
Following the numerous ENT controls at Dr. Sarafoleanu, he decided to do right tonsil cryptolysis.
I did the cryptolysis but the lymph nodes and the pains did not disappear and did not improve.
I have been treated with non-steroidal anti-inflammatory drugs for over 30 days but none have had no influence on pain ,paraesthesis and lymph nodes.

August 2017
Repeated ALL blood tests , all normal !
Hematology consult - nothing wrong .

My daily simptomps are - ONLY ON THE RIGHT SIDE

  • Fixed point pain pharynx near right tonsillar fossa - note 4 - 5
  • Pain and embarrassment in right tonsil - note 4 - 5
  • Pain under the ear, behind the ear and in the ear note 2 - 3
  • Pain and inflammation of the sternocleidomastoid muscles and trapeze especially when turning the head to the right or rotation + inclination on the back note 5 - 6.
  • Mandibular pain and mandibular joint 4 - 5.
  • Pain in the right side of the hyoid bone
  • Clavicle, shoulder-to-shoulder, shoulder, first part of the arm as note 4 -5.
  • Under Arm 4 - 5
  • Pain and paresthesis in the tongue, under the tongue, in the right tonsil, in the right tonsillar fossa in the spot where the tongue insert in the mouth (lingual tonsil area) 5 -6
  • swollen submandibular lymph node on the right, swollen right jugulodigastric lymph node, right neck on mastoid, behind right ear.
  • Numbness of the skin in the parotid area, right mandibular joint.
  • In some days, due to these symptoms I’m physically bad !! I feel sick !

Pain and pharesteis are in the deep structures of the neck not on the surface.
Symptoms occur in turn or all at once but none disappear.

WHAT MAKES MY SYMPTOMS WORSE

  • Wearing the motorcycle helmet tied under the chin
  • Strong and tall collars rubbing on my right side of the neck
  • The hour - after 1 PM the evening being the worst.
  • SHAVING (with razor blade or electric machine)
  • Blocking head rotation to the left by hand produce stabbing pain like somthing sharp is cutting my throat in the area where the pain is comming from and in the right ear.
  • Physical activities aggravate the pains at the level of the right shoulder, the cervical column on the right and the deep neck structures on the right causing
    a kind of bad feeling, the splinter in the whole body without being physically exhausted!

WHAT WILL IMPROVE MY SYMPTOMS

  • eating and swallowing (disappear both pain and paraesthesia during the meal), liquor drinking does not have the same effect and chewing gum.
  • Massage of painful areas in the pharynx with an exudate harvesting stick.
  • Staying with a wide open mouth improves pharyngeal pain
  • Keeping my right shoulder elevated or close to my right ear
  • Lying in bed with my head on the pillow
  • Standing in the chair with elbows on my desk and leaning over the desk with my head

Does this symptoms sound like Eagle !?
Nobody can tell me what is wrong with me.

you can see my styloids are verry curved twords my spine but not elongated.

2

A lot of your symptoms sound like Eagles symptoms, (if you look in the Newbies Guide section, there’s info on typical symptoms, the results of a survey a member organised, and also what could cause the symptoms) but obviously we’re not doctors so can’t diagnose you. The best scan to see the styloid processes and any calcified ligaments is a CT scan, rather than an MRI. I can’t really tell anything from your pics I’m afraid, although it could be that the stylo-hyoid ligaments are calcified rather than the styloid processes being elongated- did you ever get the scans evaluated for ES, as often radiographers don’t comment on the styloids unless asked. Have you got a written report as well?
Symptoms can be very individual, as well as what helps/ makes them worse, and often members have found that symptoms can come and go for no apparent reason, or at different times of the day!
Your best bet is to try and get a CT, ask for it to be evaluated for ES, and try to get a copy of the scan and the report. Members have been able to get diagnosed either through an ENT or an Otolaryngologist/ skull base surgeon, as well as neurovascular surgeons who specialise in the head and neck area, so it might be worth seeing if you could be referred to another doctor- there’s none on our list of doctors familiar with ES in Romania, I’m afraid.
BTW- your English is very good!

3

As Jules said, we’re not doctors, but from your scans, your right styloid looks long to me. Maybe it’s that the stylohyoid ligament is calcified on that side. I totally agree that your symptoms all sound like ES & present w/ the certain movements like ES would. A note regarding the styloids is that it’s not always the length that causes symptoms. The angle they are growing & excessive thickness can also cause symptoms even if they are normal length. In some cases, the stylohyoid ligaments calcifiy instead of the styloid processes elongating. This situation is also considered to be ES & produces ES symptoms.

ES is all of these: elongated styloid processes or calcified stylohyoid ligaments or elongated styloid processes w/ partially or fully calcified stylohyoid ligaments.

Also, I think your command of English is impressive!

4

Thank you verry much for your responses ! and i know you are very kind with " my english " :-)))

I am still SCARED that i might have cancer . All the doctors i consulted ( 12 ENT’s , 2 Hematologyst , 2 generalyst , 5 professor doctor ) they told me I was okay and that the lymph nodes are too small for a biopsy , all the blood tests are good and i am feeling excellent (execept for the throat pain) there is nothing to worry .

I have health insurance but here in Romania, the best and fastest treatment method is in private hospitals. All the consultations, investigations, analyzes and treatments made so far cost me around 40,000E . This is HUGE money for Romania. I have made all these efforts and still have no diagnosis. I feel disappointed, lost and frustrated.
Since reading this forum I feel so much empathy for all those who suffer from these symptoms and I hope that someday I will find a doctor to diagnose and treat me correctly and to resume my life.

I know that CT 3D with contrast is the best to see ES but I did not do this investigation for fear of strong irradiation.
I was happy with the panoramic dental radiography. I also made lateral radiographys to highlight ES, but the radiologist said they were of normal lengths and there were no changes.
Now I’m stuck at this point and I do not know where to go .

I can feel the tip of a sharp bone in the tonsillar fossa when I touch with my finger but i can feel that in in both sides. My ENT Dorin Sarafoleanu ( best ENT in Romania , Profesor Doctor among few who opperates at the base of the skull here ) say that he didn’t feel it and i dont have any pain pressing on it .

On September 21, i have a new appointment with him and he will test if my pain subside after anesthetic infiltration into the right tonsillar fossa.

What elese can i do to be shoure it’s Eagle !?

Jules: I have a written reports from the radiologyst that say there are NO modofication at the level of styloid process .

I know you are not a doctor, but I still know that your experience is often far beyond the doctors’ experience because this syndrome is so rare. That’s why I rely much on your sayings and your experience.

5

You’re very kind, but I am definitely no expert!
Injecting an anaesthetic into the area is one test a lot of doctors do to diagnose ES, and some members have found that steroid injections in that area keep symptoms at bay for quite a while, so it might help, and you may get a diagnosis. I think that often when people push on the bone they can feel, it does make the pain worse. I don’t know if anyone’s had an injection and it’s not helped, but they still have ES… hopefully you may get more of an idea when you next see the doctor.
The only other thing I can suggest is have a look through the research in the Newbies Guide section- there have been a couple of papers published showing that it can be the angle the styloids are growing which causes pain rather than the length (which could explain why one side is painful, the other not, but the lengths are estimated the same.) We have suggested before that members print off the research papers and take with them to their doctors appointment to help their case.
I’m sorry that you’ve had to pay out so much money and that you’re no further forward…

6

I read your post, everything said covers most of the ideas for a diagnosis. Just wanted to let you know that you are not alone. Many of us have been confused and scared before we knew what was causing these horrible symptoms.

7

Even if I paid so much money, I am happy that doctors have not discovered any malignant tumor so far. What scares me is lymphoma due to inflamed tonsil and swollen lymph nodes.
Whenever I search internet for swollen lymph nodes ,google suggests lymphoma.
I have done multiple ultrasounds and on the medical report it says “bilateral laterocervical adenopathies with inflammatory reactive character with certain benign characteristics.” I repeated the ultrasound every month to monitor the lymph nodes, but their dimensions vary a little, a few millimeters plus or minus.
All blood tests are good and I have no other health problems but the fear of cancer is terrible because I had a friend who died of throat cancer at 45 years old.
The only way to know for shure is to do a lymph node biopsy but they dont want to do it for various reasons " too small lymph nodes , lack of other symptoms , good blood test , lymph nodes not looking suspicious on ultrasound , lymph nodes not growing more )
I prefer to suffer in pain like now than having a painless cancer.

My main symptoms do not entirely match Eagle Syndrome. I have no problems swallowing and the pain disappear when I swallow.
I feel a kind of numbness on the right side of the face, my right ear, my neck on the right side, and all these symptoms exacerbate if I shave.

Anyone else has these symptoms !?
Especially swollen laterocervical lymph nodes , submandibular lymph node and jugulodigastric lymph node on the same side with Eagle ?

Searching this forum for these symptoms ,I found one or two users complaining about the same symptoms but they did not come back to write what had happened to them. I’m sorry that many people do that. They get moral support and a lot of information from the forum but they do not give anything back and dont tell what happened to them to help others.

8

I never had the pain swallowing, nor ever the feeling of something being stuck in my throat which are the ‘typical’ ES symptoms. I’ve had swollen glands from time to time, feeling like I was coming down with something, worse on the worst side for my ES, which has improved since I’ve had surgery, but never had any tests done on lymph nodes.
I understand what you’re saying about people not returning, it does get a bit frustrating, but I guess sometimes if people get treatment maybe they want to put the whole thing behind them so don’t come back, or maybe they didn’t have ES after all, so felt that they couldn’t come back, I don’t know. If you’ve found members with useful info, you could click on their badge and message them directly, they might respond to that.

9

lifeowner,

Swollen lymph glands can go along w/ ES. Just depends on what the styloid(s) are poking. As Jules did, I had sore & enlarged lymph glands over the course of my ES journey without any resulting illness.
As far as your facial & neck pain/numbness go, there are a number of cranial nerves in the area of the styloids that affect the face, neck, tongue shoulders, etc. If any of them is irritated by an elongated styloid or calcified stylohyoid ligament, then pain &/or numbness can result. The pain can be constant or just upon touching the affected area. Whether or not you have ES, it sounds like maybe you have something going on with one of those cranial nerves.

10

First of all, I want to thank you all for your support and for your understanding.
I found the cause of the unbearable pain that struck me for 1.4 years.
I extracted a 1 cm banana-shaped stone from the right tonsil crypt. This stone was not visible on radiographies and on cervical region MRI.

I feel reborn ! and disappointed by all the doctors I have visited becouse no one was able to find this stone.

Maybe somebody will be interested in reading this story that is 100% like mine: https://www.painscience.com/articles/lump-in-the-throat.php

11

Well I’m glad that you’ve found the cause of your pain, and have cured yourself! How strange that it didn’t show on the CT at all. I know quite a few members have had tonsil stones, so thank you for sharing your story, and I’ll add the link into the Newbies Guide under ‘If not ES, what else could it be’ !

12

Hello Jules

You are very kind. I did not do a CT scan. I did several MRIs and ortopanoramic radiography. Unfortunately, the stone was not seen at any of the investigations. I read that some stones are radio-transparent and they are not noticeable.

Eagle Syndrome and these stones generate the same symptoms and are very difficult to diagnose. I am sure there are many who suffer the same symptoms as I did and have seen dozens of doctors without a diagnosis.

After I removed the stone all the lymph nodes returned to normal size and finally I can enjoy life.

Capture

13

How can it be removed our ourself? Is there a way to find out?

14

I do not think we can find it by ourselves. I’ve been to many doctors and no one found the stone. I was very lucky that it came out by it self when i pressed the tonsil.

I have pressed the tonsil many times before, but it is only now that it has broken out

15

But that’s good For you. I have been having trouble with my right
ear,swollen tonsils and jaw for 3 months now. Already have been diagnosed
with eagles syndrome on left side 2 ears before and my ENT doesn’t believe
this is eagles syndrome the other side too. Sent me to TMD and now going
back to my ENT with no TMD issues found. Yours case is really helpful to
know that stones in tonsils can also cause these issues, could be another
probability. Thanks for your reply!!!

16

The tonsil stone (rock) can be clearly seen on MRI but no doctor was able to see it. I found it by myself and I marked the area with yellow collor. Doctors are indolent and only interested in cashing the consultation price. The MRI was done in April 2017, then the stone was 4.6 mm. I post the MRI slides below to help others identify if they have stones in the tonsils .

The stone size :

17

Thank you for sharing the information with me!! Appreciate it… Hope all of
your health issues are gone by now!!! i am having my CT scheduled this
Wednesday.

18

Yes, fortunately the pain and lymph nodes disappeared not suddenly but within 2 weeks after i removed the stone. CT is an analysis that irradiates you. The stone can be easely seen in an MRI with no contrast substance.

19

Thats great !! Get better soon !! It really compromises the quality of life if we are sick all the time!! I went for a CT yesterday and discovered my ENT has ordered only a Ear scan while i still have sharp pain in my jaw :frowning: very frustrating. If it doesn’t resolve i have to go back for a scan again. I will be all sick before they diagnose what is causing the pain

20

Aswini,

I assume you’re trying to rule out Eagle Syndrome thus you need to ask your ENT to specifically make sure the styloids, hyoid bone & stylohyoid ligaments are scanned. If you haven’t had your ear CT yet, postpone it & tell your doctor that you would like a more complete study of that area done. You shouldn’t have to pay for 2 CT scans so close together not to mention being subjected to that radiation twice in short order.