Still not diagnosed, frustrated with doctors

General
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Hi everyone :)

I'm so sorry that we all have to meet on such a painful issue. I feel for all of you going through this and you all have my sympathy.

Here's my story:

I stupidly took up smoking about early 2011 and a few months into that I had a bad bout of tonsillitis. Ever since then I have had this dull, throbbing intermittent pain on the left side of my throat only. I noticed when I swallowed liquid, I literally could not feel anything on the left side of my throat. I could feel the cool sensation on my right side but not my left. My throat was always somewhat sore but nothing I couldn't push through. I went to my ENT to make sure it wasn't the dreaded C word. He scoped my throat and couldn't find anything wrong so I just continued living with it. Over the last couple of months I've had a lot more symptoms start popping up.

I have had ear pain on top of my initial symptoms, and ear fullness; I also get ringing in my ear and it feels like something is crackling when someone with a high pitch voice is speaking with me.

I've also had this pain in my neck (all symptoms only on left side), the pain in my neck is at the front a little below my jawbone and closer to the center of my neck but still left side.

I went to ENT about my ear pain and he says everything is normal and my hearing is above normal, he suspects TMJ is causing the pain. This was about 2 months ago I saw the ENT.

I then had some dental work done and started having extreme facial pain. I'm working with my dentist to see if there aren't multiple factors for the pain.

I told my GP about all of this and he thinks that all my pain is psychosomatic...very frustrating.

I started to go to Eagles syndrome when I was reaching back in my left tonsil to investigate (since doctors wont), I felt what seemed to me to be a bone or piece of cartilage literally poking through my left tonsil.

Now I'm extremely worried about it snapping off and hitting the carotid artery and killing me in my sleep...I know it seems exaggerated but it's a legit fear for me.

I've been avoiding my GP in hopes it was of dental origin but I'm going to be making an appointment with him next week. The doctors never take my pain seriously so I'm expecting some bs from him. I'm going to demand to see my ENT who will probably give me even more trouble because he doesn't seem to be the type to think anyone else has anything worthwhile to say.

I'm wondering how I should bring this up with him...like give him the exact symptoms and let him figure it out or tell him what I think it is...because doctors are very egotistical and won't listen to their patients...they will only take things seriously when the patient acts ignorant and desperate for their help.

Anyways, that's where I'm at. Please let me know if you think this sounds like ES and how to move forward with my ENT if so.

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Hi Aeileen, it sure sounds like it could be Eagles to me. Your symptoms are pretty typical and feeling a bone in your throat is pretty telling as well. Well, you've come to the right place because many of us have been frustrated with doctors and been told our pain is in our heads. A lot of us get told we have TMJ and/or reflux.

Many of us self-diagnosed Eages as well. I went back to my ENT and I told him that someone told me I might have Eagles and asked if he could give me a CT scan with contrast. It's hard to say whether you should tell him your symptoms or not and see if he comes up with Eagles. I think a lot of times doctors just don't believe us when we tell them our symptoms. And they don't believe they're going to see something that's considered as unusual as Eagles. But maybe if you brought some information about Eagles symptoms and told him someone sent it to you. It's hard to know - you don't want to alienate the doctor, but you need him to hear what you're saying too. But I think it's a good idea to demand to see the ENT.

If the ENT doesn't listen, do you have the option of going to other ENTs?

I know this is super frustrating. Hang in there. Sometimes it takes a long time and having to see quite a few doctors before someone finally can help.

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It does sound very much like ES, from the symptoms you've described. I agree that some doctors don't like you to be too knowledgeable (especially when you've consulted Dr Google first!!), but as ES is rare, leaving it up to doctors to work out isn't likely to work either, unless you're lucky!

I'm from the UK, so not sure about health care in Canada, but my advice would be to read up on your rights as a patient to a second opinion, or whether you can be referred to a consultant of your choice. Then you're prepared if you have to be assertive about a referral. Have a look at the list of doctors on the menu bar- I'm not sure if there's any near you as they're few and far between in Canada, but maybe you could be referred to someone who's already familiar with ES. (You could also message Kelx, as she's from Canada and has had a struggle to find someone to operate- she might be able to let you know who she's found). Plus I would print off some info about ES- like common symptoms, and what's needed for a diagnosis, and take this with you to your GP appt, and to your ENT if you can't get a referral to someone more experienced in ES. Then hopefully with your symptoms, and given that you've explored the TMJD angle with no success, your GP will be helpful.

It's interesting that you've had facial pain after dental work- I have nerve pain which I think has been caused by the styloid process compressing the Trigeminal Nerve. The Trigeminal nerve has branches which go all along the lower jaw, and also to the upper jaw. It can often be irritated by dental work, so you may have a double whammy on it. If it is nerve pain, there are medications which can help with that, like Amitriptyline or Nortrityline, or Neurontin, so it might be worth checking that out and asking your GP about that. If they help, then you know it's nerve pain and so something's setting that off. (there's more info in the ES info section). Does your pain get worse when you press on the bony bit you feel poking in your tonsils? If so, that's worth mentioning too, as that makes it more likely to be ES.

Hope that this is helpful, and let us know how you get on!

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This is a very frustrating place to be in, I can really empathize with your aggravation.
A lot people who have never had chronic pain or illness just don't Get how you an go to doctors, tell them you're sick, and then they don't just fix it. Admittedly, it is a scary version of reality to accept..

I too have had to punch through the wall of "psychosomatic" and "malingering patient",even at the start of this when my dislocated arm had extra corners and stuck out the front of my chest like the hunchback from 300. It seems that letting Doctors know you're desperate actually immediately shut down their humanity as well, but conversely presenting too well of being blithe leaves the assumption you're not feeling That bad.
I've heard that I'm attention seeking when medication didn't work, had my drug history investigated when I refused muscle relaxers, had a neurologist send me to a psychiatrist. Another doctor told me I'd feel better if I got out more, one suggested I find a husband and become a ballerina and that I'd be happier if I left my physical trade and took up sewing, another threw a pen on the floor and told me "We're done here!" when I pushed him for treatment options.
Being miserable isn't a contest, I only mention these to let you know that having to battle for treatment is, sadly, not that unusual, but especially that's it not an immutable sentence to suffering.
It's your life, and you gotta get it back despite other people's professional problems.

Doctors can be a cagey bunch, and if they're not familiar with an issue, than it's Clearly not important. Else they would be the Best at that issue.
Also, it seems sometimes that letting Doctors know you're desperate actually shuts down their humanity, but conversely presenting too well or being blithe leaves the assumption you're not feeling That bad. Like you mentioned, some Dr's feel more comfortable with an ignorant patient, and they don't like to be told what's what.
I truly hope your next appointment is the end of this pain, but it may take some time, and a lot of frustration, and learning to say the right things in the right way, but you'll break through.
Like yours, my GP was also apparently trained at Buchenwald. I found I could not rely on them to find me care so I had to get pushy. Like Jules said, printing out a common list of symptoms, or even a few good articles from medical journals to show your doc could really help send you in the right direction. And be assertive about your referral, AND your need for symptom resolution. Mention your symptoms and see what they suggest, throw in some possibilities of your own if they are baffled, and don't let them just leave you hanging.

A line that has thus far worked well for me is "I tried X, then X, and nothing helped, so I knew i needed to find a smarter doctor. That's why I came to you."

Hope you get some answers soon!

PS- I tried to keep climbing/lifting/hammering/etc after my ES symptoms started, did a lot of really forceful neck stretching, PT, and deep tissue massage to try and resolve it, and have yet to break my styloid. While it is a scary thought, I hope you can rest easier with the idea that if my stubborn self managed not to break it, you are Very likely safe while sleeping.

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Hi everyone :)

Thanks for all your great suggestions. I wanted to reply sooner but I've been busy in the interview process.

I went to the dentist today, he had redone one of my fillings that was still very sensitive to pain about a week ago. The pain is still about the same...I'm willing to give it more time but today he opened up the gap cuz I couldn't floss and the pain is killing me. I didn't have any myofacial pain before he did my four fillings and I think it may be that Jules is right and the dental work aggravated an already existing nerve problem.

I also get tingly lips like all the time but I'm not sure if that's associated with all this.

Here in Canada, I can ask to be referred to a specific specialist, however that usually means extremely high wait times. They usually throw you into the closest specialist with the shortest wait time depending on what they feel is the severity of the problem.

I really don't like my ENT and would love to find someone who knows about Eagles so I don't have to fight as much. I will try to contact Kelx, I'm in Toronto area so hopefully I wouldn't have to travel to far.

When I press the bony bit, and thank for the reassurance it won't kill me lol...it hurts in my neck and a bit in my ear. Definitely causes repeat of the same pain. And a bit after I poke it I can feel the annoying throbbing pain in my throat.

Does anyone have repeated pain when they do chin tucks, like pulling your head back into proper positioning. I can feel the damned bone digging into my neck something fierce when I do that. I'm going to stop but still something else to note when I speak to someone about this.

Has anyone else been told it's post nasal drip and to try a nasal spray? Grrrrr doesn't help AT ALL. Salt water soothes just a bit but not for long.

Also, anyone else have lots of phlegm accumulate?

So much pain tonight from dentist...:(

TTYL and so glad I found you guys.

Feels so good just venting to people who know what I'm talking about.

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I've not had the phlegm/ nasal drip, but I know others on here have had that, and being wrongly diagnosed with that seems to be a common one, plus acid reflux, that's a common misdiagnosis too! I'm the opposite, my mouth is really dry.

The tingly lips and the increased pain definitely can be down to aggravated Trigeminal Nerve, so it might be useful to try medication for that. You can also have a look at the Ben's Friends Trigeminal Neuralgia site- you can read discussions without joining- if you want more info. Having TN start with dental treatment is really common, as is being diagnosed with TMJD. There's more info in the ES Info section about medications to help if you want to find out more.

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PS- sympathise with the dental pain- I HATE going there! Luckily haven't had to have anything other than a clean done for a long while- and that was bad enough, set the pain off a lot worse for quite a few days! There have been quite a few discussions about that on the BF's TN site- a lot of people have had major dental work done when they've had bad toothache, then it turns out there was nothing wrong, and it was down to the TN and nerve pain! So I would have as little as possible done if I were you, and make sure that any problems are checked with x-rays first! You certainly don't want to be having unnecessary work done! Also, there have been a couple of discussions on here (and it was mentioned on the TN site as a possible cause), that maybe having to have your head/ neck/ jaw fixed in one position for a while when dental work is being done could make the pain worse for us.

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Hey!!

Just happened to scroll by this..... Well your lucky your in Toronto as there is ALOT of good ENT's. I was going to go there actually because Dr. Monteiro, at the Mount Sinai Hospital has done a couple eagle surguries, but only under supervision of another doctor....I was referred to go see him but he said I was too far away and that he wasn't that comfortable doing them....BUT if your at your wits end...Come to Saskatoon, Saskatchewan....Dr. Rick Jaggi is an ENT and Facial Surgeon and he does them....He said everyone in Saskatchewan gets referred to him with this.....Pls find a doctor who will give you a CT scan WITH contrast....that is the ONLY way too really see what is going on and too diagnose eagles.....Trust me....no one will take you serious if you don't get that done... So try Dr. Monteiro, and if all hope fails....Saskatoon might be your only option as there is a doctor who does the surgeries.

P.S. LOL I also can feel the bony piece by my tonsil...It won't kill you, but stop playing with it because the PAIN MIGHT!!! Lol.....Everytime I touch it it aggravates my symptoms, so just don't touch it anymore

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With your chin tuck issue, I found the same issue as well.
They were sooo painful and caused instant migraines when I had to do them in PT! They also make a lot of scary vascular symptoms. I didn’t know I had weird bone spikes when I was doing them, but after my CT scan, PT actually cut off my treatment until I can get rid of them because of the chin tuck issues.
You’re not crazy!

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Hi guys,

Thanks for all the replies. I think I will definitely check out the trigeminal neuralgia site. You may have answered this already but I don't remember, can the styloid process interfere with the trigeminal nerve? I think that may be what's going on with me. I'm having so much facial pain especially when eating hot and cold...so annoying. Also, tingly lips driving me nuts. I do have pain on the left side of my throat but it's nothing compared to my myofacial pain.

I think I do have post nasal drip from my deviated septum but I think the styloid makes the symptoms even worse for me. Also, I have had bad acid reflux since the age of ten which I'm medicated for, I have a gastrologist that I go to in order to monitor this problem. My Dad, and his Dad died of esophageal cancer; and my brother has been diagnosed with Barrets esophagus which is like pre-cancerous cells in the esophagus :( You can imagine my terror with this throat problem, I was convinced it was cancer they weren't finding...paranoia!

Thanks for the Saskatoon suggestion, I'd love an excuse to visit! Even for a major surgery...I drove through Saskatoon when I moved from Edmonton back to Toronto and it was so beautiful from what I saw!

I'll probably check out Toronto ENTs first though.

I have also noticed tongue pain on the left side and it's sore under my tongue, not on my tongue but under it. It's like enflamed there or something. Does anyone ever get diagnosed with salivary duct problems cause I read that could be the problem but I think it's just because everything is so aggravated on the left side that that is too.

I went to my GP for refills the other day and I didn't really mention any of this because I wasn't prepared enough to talk to him. I mentioned the myofacial pain...he looked all over my mouth with his light and of course didn't see anything wrong and sent me home...next time I go I'll be prepared with a list of Eagle's syndrome symptoms. Knowing my doctor he'll tell me to up my dose of anti anxiety meds....or have me committed lol

I'm seriously considering a new GP. My sister in law is a GP and I talk to her about some stuff but she mostly has the same sort of response...treating me like a hypochondriac.

About the chin tucks, I guess I should probably refrain from doing them too although I'm working on my posture and chin tucks are supposed to be really good for that :(

I have a million other health problems too which is why my doctor thinks I'm making up symptoms. My psychologist thinks that my anxiety is caused from untreated ADHD so I have to talk to my doc about that too. I also have PCOS and will be trying to conceive soon which is another problem ahhhhh

OVERWHELMED!!! No babies yet I don't think....haha

Talk to you guys later.

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Aeileen, your throat pain and pain under the tongue sounds like me when I had glossopharyngeal neuralgia. It's another nerve that the styloid can affect. I remember looking at the charts in the medical references and thinking I might have a salivary duct problem as well, but it was the GN. Your styloid could be affecting several nerves.

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Sorry that you're having so many things to deal with... and a not very helpful GP. I'm trying to pluck up the courage to go to mine about something else- I'm paranoid that I'm labelled a hypochondriac, and feel so guilty about going...

I have salivary gland problems as well as the ES- it was when I was referred to a dental clinic for this that they found the ES. I had hoped that it might be down to the ES as it's way worse the side of the worst ES symptoms, and the pain from the salivary gland all kinda blends in with the nerve pain I get in my jaw, but so far the gland still is tender and swollen and I had surgery one side 9 months ago. I have a really dry mouth too, and dry eyes, some classic Sjogrens Syndrome symptoms (oh, goody, another syndrome!!), but so far the blood tests for that have been negative, which apparently happens a lot, but doesn't help my hypochondriac paranoia at all!!

Yes, the styloids can compress the Trigeminal Nerve, and also the Glossopharyngeal Nerve. TN often affects the lower jaw, upper jaw and teeth, GPN as Heidemt says the throat and tongue, and also Geniculate Neuralgia can cause the sharp ice-pick like pain in the ears which seems to be quite a common symptom too.

Good luck with the PCOS treatment!

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Hey guys,

I keep thinking about my ENT and talking with him about all my symptoms and imagining him look at me like I'm crazy and tell me it's not Eagles and to stop worrying...then I imagine myself getting so frustrated that I scream at him, leave the room and slam the door in his face lol

I get so frustrated with doctors thinking they know everything and I'm afraid of what I might do in response to them the next time I go in...like I'm not a violent person but I'm just afraid they'll basically just continue to ignore me.

Just not sure what my next step is I guess...I guess I should start by telling my family doctor all my symptoms and tell him about the bony bit poking through my tonsil. Just afraid to, afraid of getting the same response I always do...

I am going to go in with a list too like you guys said.

Gotta start by making the appointment!

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Good luck!

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hi Aeileen as someone else said I think your goal should be to get a CT scan, preferably with contrast and in 3D. Make sure to get copies of the final images. Sometimes ES can only be viewed properly in 3d. Another scan that is not as good is a 3D Conebeam you can get at many Dentists, also you could get a panoramic dental x-ray. But the 3D-CT is best in my experience. I'm in the same boat as you, but I have a very suspicious 3D-CT image of partial calcified ligaments, but doctors don't want to look at it and they say it's not true ES. The best thing to do in the meantime is manage the stress and get real good sleep. Do everything to rule out reflux and sleep as issues. Eat very healthy.