Most Likely a Long Time Sufferer of ES, Anyone Else? Plus Rant

[Siren]

Hi Everyone, Nice to meet you and I’m glad I found this website! I live in Canada and migrating through our health system has been torture.

Where do I even start?! I had constant strep throat as a kid and had tonsillectomy at age 12. I suffered from headaches since I was a kid and had back issues but was active.

As an adult I would have the occasional flare up of my pain around my ears and mastoid bones - dismissed as allergies. Pain in ears - dismissed as allergies. Late 1990s I remember a constant dull ache in my left sternocleidomastoid muscle but after ultrasound, dismissed as poor posture due to my job.

In 2016 I had pain in upper left molar which wasn’t infected but did become so in early 2019 and had to be removed along with the adjacent wisdom tooth in Jul 2019. CT scan was done in Jun 2019 for sinuses and neck. I also had a sinus infection due to that molar.

Everything was “ok” until end of Aug 2019 when my ‘regrown’ left tonsil had a ball of pus in it – unfortunately I swallowed it before nurse could see me but was dismissed as tonsil stone. Beginning of Oct 2019 I had a very sore throat on left side that wouldn’t go away - dismissed. Left side jaw/face pain, cheek numbness, ear pain - dismissed.

When I searched for “stabbing pain in throat”, Eagle Syndrome came up and I completely fit the symptoms. However, when I mentioned it – dismissed.

My doctor referred me to noone. By pure chance a dentist referred me to an ENT. In Mar 2020, ENT #1 dismissed my issues as “muscle” and didn’t think anything was wrong. Then I went to ER complaining about pain and lump in throat when swallowing - dismissed but ordered a gastroscopy. Gastroscopy was normal.

In Sept 2020, I asked my massage therapist if she could feel the grating and lump when I swallowed and she confirmed there was an issue. She wrote up a report to give to my dr saying that she suspected the hyoid bone was hitting the thyroid cartilage when I swallowed and recommended MRI.

Dr referred me to ENT #2 and in Dec 2020, she also dismissed me with muscle tension dysphagia and referred me to SLP of which I still haven’t had an appt with due to long line of covid patients needing rehab.

Throughout this whole process I’ve been told it must be acid reflux or silent acid reflex even though I don’t have either (2 ENT scopes and gastroscopy proved that). Esophageal spasm was also proposed. On top of that, noone wanted to do any new imaging because a Jun 2019 CT was already done even though the severe symptoms started Oct 2019.

I’ve seen so many health practitioners! I had multiple appts with my dr and his assistant, then I changed to my nurse practitioner; I’ve seen a sports doctor, chiropractors, acupuncturist, massage therapist, physiotherapists, dentists, dental surgeon, and I’m sure others that I’m forgetting.

In Dec 2021, I asked my chiropractor about Eagle Syndrome and if she could assess me. She had my 2019 CT scan sent out for a second opinion and recently the radiologist report FINALLY diagnosed me in Jan 2022 with Eagle Syndrome. In the report it says I have bilateral elongation measuring 3.5cm and the right one is slightly longer.

Note this is from a 2019 CT scan when I was mostly asymptomatic. Now two plus years later, symptoms have been getting worse. Sadly noone took me seriously except my massage therapist and chiropractor. It’s been a nightmare but I feel relief that it’s diagnosed and vindicated.

All-in-all, the 2019 CT scan had all the answers but the first report mentioned nothing about elongated styloid processes.

Since this is very new diagnosis, I have yet to speak with ENT #2 about it but will be soon.

I don’t know what the plan is yet but I have many symptoms:

• clicking in throat when swallowing
• sensation of foreign object in throat
• pressure in head & ears
• ear/face/jaw/neck pain
• numbness in cheeks & temples
• headaches
• pain in eyes, tongue, left tonsil
• occasional vertigo
• nausea
• odd taste in mouth (bone?) coming from throat
• feeling like I want to faint when standing up after squatting
• occasional feeling of fainting when at my standing desk
• had to get better pillow otherwise my throat feels crushed when lying down
• hoarse voice
• sinuses ache
• occasional tinnitus in left ear; pulsatile tinnitus in right ear
• and so on!

I suspect this has been building for years based on the symptoms I’ve had in the past. Anyone else have suspected they had it all their lives? What have you done in regard to holding a practitioner accountable (i.e. calling, letter, reporting)?

Thank you for “listening”!

[Isaiah_40_31]

Hi Siren!

You’ve come to the right place for answers! I’m sorry for all you’ve been through, but it does seem the way many of our members have been treated. Some of your symptoms are ones we associate with compression, most likely of the internal jugular vein (IJV) i.e. feeling like you’re going to pass out when going from squatting to standing (POTS), headaches, vertigo, feeling faint while sitting at your desk, & ear pressure. You may find these symptoms are worse when you head is in certain positions - turned right or left, looking up or down or in either direction diagonally. There are many discussions on here about vascular ES including some w/ complex scientific explanations of the physical mechanics of what’s going on. Here are two links that Jules posted several years ago w/ a basic explanation of ES symptoms & their causes that will be helpful for you: ES Information: Background, Anatomy, Styloid Length, Angulation, Classic and Vascular
ES Information: Common Symptoms And Possible Explanations For Them

Sadly, you live in a country where we have many members who are in the same position as you - had symptoms for years, saw many doctors & were told they were healthy or given lame excuses for their symptoms & passed by or passed on to someone else, but never offered a viable explanation or help. Since COVID, because of the exceedingly long wait times for surgery in Canada, more of our Canadian members have been coming to the US for surgery.

I’m not sure there’s any way to hold a practitioner accountable due to ignorance of a rare condition, however, my personal opinion is that any good doctor who doesn’t have an answer should not be dismissive & should be willing to do the work to help a patient w/ a “mystery” illness dig around for a diagnosis until one is found. I think due to the way our medical systems are changing, we’ve lost the personal care that doctors used to give their patients. Medicine has become more mechanized/computerized & impersonal, & in some cases, almost a conveyor belt industry - pushing patients through one after the other w/ very short appts. & little time to discuss concerns. It’s quite unfortunate.

I know others will join this conversation. Just you wait!! You’ll get some great input, information & further support.

[Jules]

I think lots of us when we read the common symptoms have a light bulb moment & realise we’ve had symptoms for years! Mine were minor ear & jaw issues which I always put down to ear infections & maybe wisdom teeth, I had a bad whiplash injury 25 years ago & I think my ES was caused by inflammation from that- I’ve had neck pain since then. But I was lucky and when the symptoms worsened I was diagnosed fairly quickly; that does seem to be unusual on here though, sadly many members have stories like yours. I don’t know the Canadian system for reporting etc, but I would say that as ES is a very rare condition, it’s not like the doctors missed something obvious…I was told by the doctor who diagnosed me that ES can’t affect blood vessels, I am happy that he would have had the report from my CT stating bilateral jugular compression, so have to hope that he’s learnt something from it!
I hope that you can get somewhere with treatment…

[Siren]

Thanks Jules, my story is so long that I didn’t include extra details.

I suspected ES from the start based on my symptoms and I understood ES to be rare therefore delicately tried to get help without alienating myself.

When my symptoms weren’t going away, I mentioned it to my dr’s physician asst, “Could it be Eagle Syndrome because it seems to affect people who had tonsillectomy?” and he said “But you didn’t have tonsillectomy…” and I said “Actually I did, when I was 12”. That info was in my file, mentioned several times. He just said “Oh” and he didn’t take it further. This is the point where he needed to do a “Let’s take a second look at that CT”.

While waiting for my ENT appt, I contacted the dentist who referred me to that ENT and asked if she could look for ES on my panoramic x-ray. I heard nothing back.

My frustration is the sheer amount of dr/phys asst appts and they still wouldn’t refer me to anyone and I mean, noone. Instead they wanted me to take a proton pump inhibitor (PPI) for the acid reflux I didn’t have. This is the theory they stuck with.

Any referral I got was due to either me getting or pushing for it through another route.

Sadly my elongated styloid processes weren’t caught on the 2019 CT by the first radiologist, ENT #1, and ENT #2.

Around the same time I had a cone beam CT via my dentist. They ordered it due to a lump the periodontist felt in floor of my mouth. A periodontist, dental radiologist, and an endodontist looked at this one.

[Catmd]

Hi Siren - unfortunately your story is very similar to many others including mine here in the US. I have seen ENTs, neurologists, dentists, cardiologists, chiropractors, more ENTs, and multiple general practitioners. Traveled all over the country seeing specialists and finally gave up. Decided late in life to get braces. First orthodontist did not see my 5 cm long bilateral styloids, and for some reason I just didn’t like the first orthodontist so I went to another. Second ortho looked at the CT scan and asked if I started to faint when my head was turned. I almost cried when he pointed out the crazy long spikes in my neck. I had been telling doctors that I started to faint when I turned my head for years and all of them dismissed this alarming symptom as vestibular damage from migraines, which I wasn’t having. Even armed with a diagnosis of Eagle’s and good imaging, no one knew what to do with them or how to help. My ENT at the time said they weren’t a problem and also told me it was all acid reflux. He said he used to just break them off through the skin. My GP had no idea what to do about them and had never heard of Eagle’s. Had to call his son the dentist to confirm Eagle’s was real. This group and the resources offered truly saved me, Finally went to a surgeon at a nearby university who had done styloidectomies, but he only removed the tips of mine, so I had to see another surgeon who would do removal to skull base. 16 years of struggling to find competent help. If you think the first diagnosis is a challenge, trying to get anyone to believe you still have styloids causing trouble after they have supposedly been removed is almost impossible. One bit of advise that helped me was to refer to the problem as ‘elongated styloids’ instead of Eagle’s Syndrome, because many doctors don’t know what Eagle’s is or they don’t think it is real. Also, focus on your top 3 or 4 symptoms - whatever bothers you the most. Only the surgeon who finally did my revision surgery (Dr. Hackman, UNC Health) did a full review of all symptoms and all imagery and actually looked in my nose and throat and mis-shaped face. Faced with a laundry list of symptoms, most docs here loose focus very quickly because insurance only pays them to think about a patient for 6 minutes. I even had one respected medical group see the styloids and refer to them as nasty bone spurs, but not tell me what they really were because I did not have the classic symptom list. Styloids can be long and not cause symptoms, so the doctors didn’t want to make me think something was wrong by telling me they were longer than normal. Keep fighting for good care - I gave up trying to be nice about it after a doctor yelled at me for coming to see her about something she had no experience with. Even Mayo Clinic doctors scoffed at me because they didn’t believe in vascular Eagle’s. Hoping someone in this group from Canada can give you some specific advise to help navigate your healthcare system. Know that you are not alone on this crazy journey.

[Siren]

Catmd, thanks for your input. It’s been a relief to read other stories and to know that I’m not the only one struggling in the quest to get help. The Canadian system is such that I can’t go directly to a specialist. I have to get a referral from a doctor, and each wait time for the ENT has been 3-4 months. And you try to fit in what you can in the appt and either you are poo pooed or you get an abstract diagnosis that leads you down the wrong path and wastes more time, so you have to start all over again. Or rather, you can’t start again because your doctor will refuse to refer you again because you got your “diagnosis” already. Completely stuck.

[Catmd]

I am so sorry you are going through this. Are you able to get a disk of your CT scan or select images of your styloids? When trying to get a referral to a surgeon for revision surgery, I prepared some images from the CT scan using 3D-slicer (a 3D rendering program that is free) printed them out, labeled the styloids and affected blood vessels, typed up a short list of symptoms, identified the surgeons I wanted to see with phone numbers and fax numbers, and took the package to my GP so he could see what was going on and did not have to do much work to prepare the referral. He sent out one referral and the surgeon’s schedule was so booked I sent out the same package to the other surgeons with a letter explaining that I could not get a timely referral and really needed help. My insurance allowed this, and though the surgeons’ office staff told me on the phone I had to have a referral, both surgeons accepted my letter and information and gave me appointments to see them. Some people on the forum have taken research articles to their doctors to show them what the styloids could be doing. As mentioned above, there are surgeons in the US who accept self-paying patients, and some of the university hospitals offer financial support through payment plans. If you run out of options at home you could consider visiting a surgeon in the US.

[Siren]

Thanks for the input and suggestions.
Honestly I don’t think this process is possible in Canada, at least not in Manitoba - any other Canadians want to weigh in? It’s the responsibility of the referring specialist/doctor to make the case for you. However, I do think it’s possible to do your own research and discuss options. I would have no problem calling surgeons in Canada to ask what their process is (i.e. what info they need for referral etc) so that I know what to discuss with my primary care practitioner. The only surgeries I’ve had in my life are tonsillectomy at 12yo and cholecystectomy at 29yo. Both instances were referred by doctors due to chronic infection and inflammation, and of course these surgeries are more common.

I’m new on this path too and I’m not sure if there are Canadian surgeons that do this surgery privately.

I’m going to read the information on this site about how to approach the subject with ENTs etc so that I can have better communication with her and explain how serious this is for present and future me.

I’ll be speaking to the ENT on Jan 24 and I’ll be pushing for an updated imaging. I can ask about getting a digital copy of the CT scan but I actually need a new one for updated baseline since my symptoms have escalated since 2019. I wouldn’t say I was completely asymptomatic in June 2019 but I did have a molar/sinus infection going on that was causing inflammation in my face/jaw etc.

Unfortunately the pandemic really puts a wrench into things, but that won’t deter me.

[Jules]

As Catmd says, if you have time, have a look through the research papers- there’s links to some in the Newbies Guide Section, & lots of up to date ones in the Research Papers Section, find any which support your symptoms & maybe print them out & take a couple with you to show the ENT in case they don’t know much about ES. And as Catmd says, it’s best to focus on the more well known symptoms & don’t mention any weird ones- we know that ES causes some very strange symptoms but it seems to scare doctors off!
It’s so hard to keep fighting, especially when you’re feeling grim, but it sounds like you’re really tough & a fighter so hope the ENT helps you on Monday

[Siren]

Thanks Jules, My ENT appt (most likely 15 min) will be over the phone therefore I’ll have to be succinct with her. I’ll do some reading and list some talking points to discuss. Thankfully I have this website and many people and experiences to refer to!

[Jules]

Didn’t realise it was a phone appt, that makes it harder! I guess your couldn’t get their secretary’s email address to email links to research papers before hand? They’d really love you then

[Siren]

Hi Jules, I lucked out, I asked if I could email the radiology report and even though they said they don’t normally give out email (they prefer faxing for privacy), the front desk admin allowed me to email it. Yah!

However you’re right, I’d hesitate to send a bunch of reports. I’m curious at this point what the ENT’s opinion is on ES, as in, how much convincing do I have to do. If I get nowhere or if she wants to throw a bunch of pills at it, then I’ll have to be more “aggressive”. Starting point, I need new imaging and it’s a pandemic, so … sigh… this will be interesting.

[Isaiah_40_31]

I will pray that you will get a referral for the imaging you need without a lot of resistance from the ENT. Hopefully she knows something about ES even if her PA doesn’t.

[Siren]

Today I had call with ENT. Thankfully she’s heard of Eagle Syndrome! That’s one hurdle. She wants to start with conservative treatment to determine if it is Eagle Syndrome, therefore a pain/steroid injection in the area. Then if it’s determined to be ES, then take it further.

She’s ordering a video fluoroscopic swallowing exam and neck carotid ultrasound. She was quite pleasant and understanding but I had to push that I’m not just experiencing pain - I explained my blood vessels and nerves are involved too hence the neck carotid ultrasound.

I asked her about requiring another CT to update the imaging and she said my Aug 2020 CT done for sinuses does show most of the styloid processes. She’s expecting the VFSE to show the styloids as well.

But it could be months for swallowing test, maybe 2 months for injection. The pandemic and overflow of patients are affecting everything.

[Jules]

Good that the ENT had heard of ES! The injections don’t help everyone though, so if it doesn’t work, that doesn’t mean that it’s not ES. Unfortunately although pain meds, injections etc can help with ES, & some people can manage like that, removing the styloid is the only cure…I think that quite a few members have had swallowing tests & it’s not shown anything too, so it sounds like just kicking the can down the road really. On a positive note though, at least you were believed, that sounds a big step forward for Canada!

[Siren]

Hi Jules, I completely agree. They’ve been kicking the can for quite awhile. Being believed is half the battle.

ENT called an hour late even though it was first thing in AM, and I tried to fit in as much as possible in a 15 min convo. I’ve been pushing since Sept 2019 when I had something weird going on in my “regrown” tonsil. I’ve seen every specialist I could think of, told them all the issues, even changed my primary care provider. This whole thing is stressful, and as soon as the pandemic started, I knew things were going to be worse.

They are totally okay with you spending $thousands to figure out the problem but now the pandemic has sliced my earnings by several $thousands as well.

I’m convinced it’s ES as every symptom fits. I don’t care if I have to blubber on the phone, I won’t let it go.

I should note that my voice was hoarse on the phone and hearing that it made her understand that something for sure is going on.

[Siren]

I’ve decided that I will pay out of pocket for the neck ultrasound to assess my carotid arteries, etc. There’s a business here that does private ultrasounds. I’m tired of the misdiagnoses and waiting and waiting. I’ll call the ENT office on Tues and get it faxed off. If anything, I think it will give an idea if anything is being compressed.

[Isaiah_40_31]

Hi Siren,

Please remember that the internal jugular veins can also be compressed when the head is in certain positions. Though learning about the situation w/ the carotid arteries is great, the ENT really should be looking at both the carotids & IJVs. Also, as has been mentioned on here quite a bit recently. A static test (i.e. head in neutral) often doesn’t show anything significant. Dynamic testing (head in different orientations i.e. turned left/right, looking up/down or diagonally in both directions can reveal compression that isn’t visible w/ head in neutral. Please make sure when you call tomorrow that you request dynamic testing for the reason I stated. I hope she will refer you for that.

To clarify, internal carotid artery (ICA) compression (inhibits blood flow to the brain) often gives stroke-like symptoms whereas IJV compression (inhibits blood flow out of the brain) causes intracranial hypertension, migraines, pulsatile tinnitus, brain fog, etc.

[Siren]

I was thinking about that too. I’ll ask the private clinic if they do dynamic neck ultrasound before I ask to send them the requisition. My pulsatile tinnitus whooshing definitely changes when I have my head/neck in different positions.

[Siren]

I already knew I could palpate the left side which is more symptomatic, but I wanted to check the right side and see where it was poking. I put on some clean gloves and checked… ugh such a gross sensation when feeling both sticking into the back of my throat. The left one sticks more towards the outer side of the glossopalatine arch towards my cheek, and the right side is a little more inward. My left “regrown” tonsil is inflamed every day which could explain the constant irritation on the left. No wonder I’m getting “ripping” sounds when I yawn/open wide. I also get the sensation that I have to release the adhesions.