Please help - suspected Eagle's

General
1

Hello everyone and happy new year!

I’m here because I believe I’m onto something and I need people to tell me I’m not completely losing my mind.

Right, so for quite a while now I’ve had lymphadenopathy - multiple areas, but originated in my neck. Anyway, that set off a chain of events, now I live with health anxiety and compulsive checking for any lumps and bumps. Well - maybe two months ago now I was lying down on the couch and checking one of the lymph nodes in my neck, when my head decided to check the area above it, and lo and behold I found a hard, non movable lump, that was maybe the size of maybe one or two big pinheads, maybe a bit bigger. I freaked out, because my lymphoma fears went FULL.BLAST again, absolute agony for my mental being. Anyway, few days later after compulsively checking the ‘lymph node’ I realised it’s not really round…it’s sort of…extending upwards towards my ear. Thought great, the doctor really has to believe that I have cancer now :frowning:

The lump starts (or shall I say ends) sort of where my jaw makes a curve downwards. Anyway, go to the doctor, he said he can’t feel anything apart from my old lymph glands, and to come back in 6 weeks.

During this time, I sort of calm down and reason with myself, but my brain suddenly thinks ‘hey, can you feel that lump from the inside?’ and I poked around my mouth and…almost fainted, I probably have mouth cancer, great, health anxiety is on a rampage again. Hard little ball that doesn’t move - no wonder that lymph gland was hard, it’s probably metastatic, and I have a white patch on my tonsil which isn’t a stone, all the symptoms check out!

Couple of weeks later, I’m still prodding around my mouth every single day multiple times to satisfy my ocd, my finger slips around my tonsil wall and I thought oh that’s strange, this feels like a sort of ligament holding my tonsil…but nothing like it on the other side. Even though it was hard and non moving, it didn’t really set off my anxiety, because it sort of felt…natural, even if it felt weird?

Anyway, go to the doctor again, he checks me, I bend my neck because it’s difficult to feel the lump if you don’t press just deep enough (and doctors tend to barely graze your skin when checking), and he said what I’m feeling is the base of my skull and that my throat looks fine, and the white patch is just discoloration. I was prescribed some anti depressants for my anxiety and told to come back in a month’s time.

Now, I come back home and as my fellow hypochondriacs will now, google is the best doctor. I’m thinking how the heck can I be feeling the base of my skull? I even actually looked up how the human skull looks like. Wait, we have a weird bone protruding behind our ears? The heck is that?

Of to wiki and that’s how I learnt what a styloid process is, and once I bumped into eagle’s syndrome during my anxiety-induced research, I just KNEW I was onto something. I looked up articles and pictures and a lot of it connected with me - I even saw the scary image of someone having eagle’s literally poking through their tonsils into their mouths. And funny thing is, that is EXACTLY where I am feeling my lump from the inside. Only mine, luckily, isn’t poking through the skin.

So to cut it short, I have a lump that I have now made sure is one lump - it’s the same one I’m touching from both outside and inside - it’s elongated, has a sort of conical, even horn-like maybe? shape, that I feel ends at the curve of my jaw and extends upwards (I lose track of it sort of where the ball bit below the ear is) and it’s poking into my left tonsil, but it’s not visible to the naked eye, apart from the wall in front of the tonsil being slightly bigger than the one on the left. If you poke the mouth wall sort of in front of the tonsil, you can feel the tip of the lump, and if you poke around behind the tonsil, you can feel a slender ligament-like shape extending somewhere beyond haha.

So to me, the shape and placement absolutely corresponds to eagle’s, especially after seeing all of those photos. What doesn’t check out and that makes my head scream cancer again, is that I don’t really have any pain. My only symptoms are that before I found the lump, I noticed that my left ear didn’t hear as well as the right, it was ever so slightly muffled (it seems to be fine now though). But after discovering the lump and especially the inside part, the more I touched and messed with it, I started getting more and more pain that radiated into my left ear - very sharp, shooting pains that would shoot right into the center of my ear. Usually the pain only lasts a second or two, but some days it would linger for longer. But it seems to correlate with my manipulating the lump, and the more I do it, the worse it gets. Even when I don’t do it, sometimes the pain will come and stab my ear out of nowhere, sometimes will even radiate to my left eye. Once it go so bad I felt the foreign body sensation in my throat as well.

But because I try to control my touching now and because the lump doesn’t poke out that severely I assume, I don’t really get that much or any pain at all really, some sensations in my ear, but not neck pains or throat pains, I can swallow perfectly fine. And that’s what puts me off - the lump fits the story, but whatever Eagle’s article I read, it says you must have pain, and quite severe as well! And that in most cases it presents after trauma - I didn’t have any and I didn’t have any surgery on my tonsils.

I’m sorry that my rant has been so long, but I want to hear from people with experience. What do you think of this, do you think I may be on the right track? I really pray this isn’t cancer, well the lump hasn’t changed in almost 2 months now at least I think, but it’s very scary to find something hard and immovable. Please help a suffering hypocondriac.

Thanks for bearing with me - Sparrow

2

Hi, and welcome to the site!
Sorry to hear that this is causing you so much anxiety-once you find a lump it’s quite natural to be worried and then that anxiety can feed itself… The figures for how many people have elongated styloid processes vary a bit from the research I’ve done, but it seems to be about 4%, and then only about 4% of those people have symtoms from it. Eagles Syndrome is when people have symptoms from elongated SPs or calcified ligaments; probably quite a few people are walking around with SP’s which could be felt but never notice! So it could be that you do have perhaps elongated or angulated styloid processes and it could be what you’re feeling, but it doesn’t sound like you have too many symptoms at the moment. Probably if you hadn’t been checking for lumps, you’d maybe never have known?
The best way to tell would be to have a CT scan, which would show if the SP’s are longer than average, or at a funny angle, but obviously that’s more radiation, which maybe isn’t a good idea for you? (I don’t know much about lymphadenopathy or if you’ve had to have scans etc. for that already?) I guess the fact that if they do set off symptoms when you press them could indicate that you’re perhaps pushing them towards a nerve, which then sets off some pain. But doctors aren’t going to be keen to operate to remove them if you’re not symptomatic, as there is always a risk with the operation of nerve damage or stroke, so it’s not an easy decision to make… to be honest, most members get to the point of making the decision because the pain/ symptoms gets so bad that they’re willing to take the risk. So if you’re not getting many symptoms at present, it would probably be best to try not to worry. Easier said than done though, I know!
I hope that this helps a little?

3

Thanks for the reply Jules!
So if I understood correctly, what you’re saying is that pretty much 96% of people with that elongated bone will not have any pain related with it? So do you have to have the pain symptoms to be ‘qualified’ for an Eagle’s diagnosis? Because I was under the impression that Eagle’s IS the elongation or calcification itself, with our without the secondary symptoms. Yes, I probably would not have known about the lump if my finger literally hadn’t slipped. And I wouldn’t know about Eagle’s either if I didn’t decide to check how my tonsils feel like!
The only scans I had this year were an ultrasound of my neck (this was way before I had this new elongated lump) for the lymph nodes, two xrays of some teeth and and an xray for my hand. Yes, I think the pushing does trigger a nerve, and apparently some articles on Eagle’s actually mention pain when manipulating the styloid process, that was another tick box for me.
To be honest, I would PREFER not to have any type of surgery because I’m terrified of it! And who minds NOT having too much pain? But I do want to know WHAT I exactly have there. Because of the health anxiety of course I will keep thinking of cancer, but either Eagle’s or simply an elongation/calcification makes more sense even to my nervous brain, especially after reading and seeing the shape and positioning of eagle’s, because it all matches up.
But as I said, without an answer from a professional my brain will keep going mental. I know that with HA it will always slightly go mental, but it would be MUCH easier if I knew this was something benign. Problem is, I don’t know how to persuade my general doctor! Because they don’t really poke into your mouth, and otherwise I don’t know how to persuade them to let me see an ENT for this! And because they can’t SEE the lump, they just think I don’t have it, which is absolutely not true :frowning: Is there any way I could prove to them that this could be a possibility?

4

Sparrow
I noticed my lump by accident because it was the ONLY thing that stopped my pain when I pressed on it. When the docor pressed inside my mouth the the pain INTENSIFIED for days. On one occasion. I actually lost feeling in my arm for about 12 hours from the pressing and prodding. As many will agree, we are probably more against you having it than for you having it BECAUSE IT IS PAINFUL!!!
I TRULY PRAY YOU NOT HAVE IT>
IN THIS CASE, I say rust your doctor if you are not feeling any unbearable, worsening, fatiguing, GOD HELP ME NOW pain.

Best wishes
Blessu2

5

Sparrow
My pain was sooooo intense or adhement (meaning it refused to leave DESPITE ANTIBIOTICS) I went to the ER. They initially thought it was mastistoiditis. They asked where it hurt (so yes having pain is generally an indication that there is a problem) they felt my neck and did a C SCAN as ordered by my doctor.
Please be advised that when your bod is fighting off an infection your lymph nodes can become enlarged per the Dr. and google as well. Whe you saw you Dr, they may not have fel what you felt due to that.
On another note please be advised chasing a diagnosis can be expensive. Though I was diagnosed in the ER, I sought SEVERAL 2nd opinions and opportunities to get a quick fix INSTEAD of taking meds. My account with insurance when down quick, and I still had to wait on my higher power to move a my behalf. So if you have anxiety meds {I say this with humor} take 2 for me and one for you, calm down and try not to put more on yourself than is necessary.

6

I can see your point about wanting to know what the lump is- I know that in the UK you are entitled to a second opinion in some situations - we did have a link to an article written by a Moderator on another site giving advice about this but it’s not available now, unfortunately. So I googled it and found this:
http://www.nhs.uk/chq/pages/910.aspx
’You can ask your GP, consultant or hospital unit for a second or further opinion (an opinion about your health condition from a different doctor).

Although you don’t have a legal right to a second opinion, a healthcare professional will consider your circumstances and whether a second opinion is needed.
Do you need a second opinion?

Before asking for a second opinion, it’s worth asking your GP or consultant to go over your diagnosis and explain anything you don’t understand.

If you’re unhappy with your diagnosis or would like to consider a different course of treatment, discuss this with them. Your GP or consultant will be happy to explain things and, in many cases, there may be no need for a second opinion.’

All I can suggest is that you print off some info about ES, the symptoms you’ve had by touching the lump to check it out, maybe some pics from online of where the SP’s are and how they show up in a CT, and ask if either you could see an ENT, or whether your GP could send you direct for a CT? Not sure if they’re able to do that? If you found out that it was more than likely to be an elongated SP, would that put your mind at rest? Presumably your GP is aware of your HA, and if they understand that then maybe they would allow this referral to help with your worries.
I was referred by my dentist as I had trouble with salivary glands as well, and I had a panoramic x-ray which showed the SPs well. I don’t know if that might be possible for you otherwise?
Just to confirm- yes, ES is only diagnosed when people have symptoms arising from elongated SPs or calcified ligaments.

7

Hi Sparrow!

Happy New Year! I totally understand how you feel & want to second what Jules said & encourage you to try to get a CT scan to confirm that what you’re feeling is your styloid. From what you’ve said, it sounds suspicious.
I had neck pain & thought it was either from cysts in my thyroid or something going on w/ a lymph gland. I poked around & found a hard lump under my jaw. In my case, poking the hard thing actually caused more pain rather than stoping the pain. Because of the location, I thought I had a clogged salivary gland. I hit gold w/ the third doctor I saw as he was familiar w/ ES and diagnosed me immediately after hearing what my symptoms were. He sent me for a CT scan to confirm the diagnosis. Two surgeries later (one for each side) and my life is pretty much back to normal.
I also agree w/ Jules in that, if you are asymptomatic, skip surgery for the moment. It is a major surgery and takes many months to completely heal.

I will pray for God to open the door for you to get the second opinion you need.
:slight_smile:

8

Thanks for all the replies once again!

Blessu2, that’s odd that it actually stopped your pain when pressed on. Like most articles mention, the pain usually intensifies, just like when your doctor poked at it. That’s what happens to me usually - if I press just ever so slightly harder than a light press, I’m going to get pain in my ear and around it. At least I know it’s connected. Trust me, I’m rather happy that I do not have severe pain but at the end of the day I think I’d prefer to have a benign painful condition than have a painless cancer! But I do feel for every single one of you who has to go through pain, whatever the intensity. And yes I do realize looking to get diagnosed can rack up the bills but hopefully it’s just a matter of seeing the right specialist/getting the right test done here in the UK under the NHS. I just want a diagnosis so I can move on with my life!

Jules, I think you can search for a second opinion in the UK under any circumstance, either change doctors or go private for a single checkup. But that can be such a hassle to be honest. I already have experience with two doctors not feeling a lump I had and only the third one actually acknowledging it. I mean in the end they were ALL right, it was nothing serious, but that just proves my point that just because you can’t see it or can’t feel it first time, doesn’t mean it’s not there. (I should probably point that out to my doc next week!). As I mentioned, I doubt my GP will feel the lump because he tried from the outside and mentioned the base of the skull thing, and he only shined a light into my mouth, and the thing isn’t seen like in the severe google image cases, but it can definitely be felt. I doubt I’ll get a referal to an ENT even though that’d be lovely, and he might be difficult to persuade to send me for a CT - although I’m wondering, can an elongated styloid be seen on ultrasound? I think it may be easier to get that ordered considering I had a few done in the last year. And yes, if the doctors told me it’s most likely just an elongated or calcified SP and definitely not something like cancer that will kill me, YES definitely that will put my mind at ease in regards to that lump. Problem is doctor keeps saying that because of my health anxiety no amount of testing will help me. I understand what he’s saying about the thought cycle, but it’s better to have a cycle that says ‘you had this scanned and it’s nothing’ than one that says ‘how can you know this is benign, it might be the silent C’. I’m thinking if all else fails to maybe go back to my dentist but I’m not sure whether they know about this condition at all, because it’s not exactly tooth related.

Isaiah, I do hope you said suspicious as in suspiciously sounds like SP elongation and not suspiciously like cancer (haha can you tell I have HA?). After the first google searches before pointing this out to the doctor, I did think maybe it’s something with my salivary glands, but now I’m pretty sure it has nothing to do with them. My lymph glands all shot up more than a year ago due to what I suspect are specific environmental factors. Or cancer, because doctors don’t believe in environmental factors :slight_smile: But anyways, getting off topic here - was your diagnosing doctor actually a specialist like ENT or just a family doctor? I found that specialist doctors in the UK are quite qualified, while family doctors are not that good. And speaking of CTs, is it definitely a CT you need or is an xray from the side enough? Also, as mentioned before, I will GLADLY skip surgery as I am terrified of them :slight_smile:

Thank you for the replies so much once again, you can’t imagine just how much they can help someone who has anxiety and feels at a dead end.

9

I don’t think a straightforward ultrasouns would show if the SP’s are elongated or not. They can show sometimes on a normal x-ray, but not always; it depends on the angle they’re growing at. CT is supposed to be the best for showing them.
I guess if you’re that worried maybe you could pay private to have a CT done- don’t know how much that costs… but if you went down that route I would make sure that the radiographer knows what exactly to look for beforehand as there have been times on here that people have got radiography reports and there’s no mention of SP’s at all!
I wish we could help you more with your concerns; given that the pain is definitely worse after you’ve pressed in that area, it does seem more than likely you are pressing on the styloid, but I can understand that it’s not enough of a certainty to help your anxiety!

10

Well considering I can feel the darn thing pretty much fine from both outside and inside maybe a regular xray would be strong enough to see it. Speaking of CTs, I’ve found an article or two saying to go for 3D CTs instead of regular ones - I thought there’s only one type of CT scan?
The pain definitely pops out when I press on the thing, and I forgot to mention that I had a few weird recurring symptoms when I pressed on the lump beneath my jawline - I’d either get a ‘clicking’ sound in my ear or just beneath it, and sometimes I’d get a seashell effect - as if wind’s blowing through my eardrum! Anyone else experience anything similar?
As I have my appointment in a few days time and I will try my darndest to get the doc to check me correctly this time and get me a referral to a specialist, are there any articles anyone could highly recommend I print off and take to the doctor?

11

I’m having the same symptoms with clicking in my ear and the noise that sounds like putting a seashell to your ear, just blood flowing. The clicking started first in response to external noises like a door closing or being on the phone, then I’d cough and it would happen then too. One day I had ringing really loud for 15 seconds? and the next morning I had this muffled hearing, stuffy ear with pressure and that noise.

12

Here’s a link to a study- some of the facts might help you, and there’s a pic of a patient with a bump from his SP visible on the outside of his neck:
http://www.saudidentaljournal.com/article/S1013-9052(10)00094-5/fulltext

It mentions that you don’t need to have had a trauma or tonsillectomy to have elongated sp’s in the discussion section and shows an x-ray with SP’s visible. (BTW it’s not the strength of the x-ray which is the problem with SP’s not being visible, it’s about getting the angle right to show them as the jaw bone can often hide the view of them) The 3-D CTs are really good for showing if the SPs are compressing the blood vessels- given that you don’t usually get symptoms it might not be something you need to push for, but there are some programmes you can use online to convert a CT into a 3-D one anyway. Although in the UK they don’t seem to give people copies of their CT anyway, and different doctors use different angles. I would think that all you want to look for is to see if yours are elongated and could be responsible for the bump you can feel, so a normal CT should show that fine.
The noise sounding like a sea shell could be pulsatile tinnitus- when you can hear your heartbeat or whooshing noise- there are a few causes for that, but it can be common with ES, sometimes when the SP is compressing the jugular vein. Perhaps when you’ve poked about you’ve pushed it towards that vein?
I hope that your doctor’s appt. goes well, and let us know how you get on.

13

TickledPinkk, it’s odd your clicking was started by external noises! Don’t think I’ve ever experienced that, apart from when I physically palpate the lump sometimes. Obviously it’s just hitting something somewhere. I think.

Jules, thank you again for the info. That’s actually pretty much the place where I’m feeling my lump from the outside as well! Only it’s not visible to the naked eye. I really can’t believe my GP couldn’t feel it last time! The problem is they only palpate skin deep, I don’t know why they’re afraid of pushing a bit deeper. Let’s hope this time’s a charm!

I will try to dig up some other articles I found ages ago as I think they’re a bit more concise and straight to the point, as we all know doctors don’t like you taking up their time too much (…especially when you’re a hypocondriac and they think it’s all in your head).

And yes, literally all I want to know is what this bump is. I’m preeeetty sure it is an elongated SP from the shape and position, but heck, you never know. But you won’t know until a doctor actually gives you a chance at finding out. If I got a simple radiography test that said yes that lump is an elongated SP, no actions needed, move on with your life, it’d be one big rock off my shoulders. My appointment should be on Tuesday, so I’ll try to print some info tomorrow and tell you how it goes, and I pray I get somewhere with it.

14

Sparrow - Yes my “suspiciously” was used as in your symptoms sound suspiciously like ES (not the scary C). My diagnosing doctor was an ENT. I’m in the US where it’s potentially easier to see a specialist than it is in countries w/ socialized medicine.

I will be praying that your doctor will poke a bit deeper at your appointment on Tues. (you should encourage him/her in that direction) & be able to feel the lump you feel.

:rose:

15

Well, good news - I just came back home from the doctors and I’m being referred to an ENT! I THINK I convinced my doc that Eagle’s is a thing, he hadn’t heard about it (surprise) but he did skim through the research. He did say he felt a slight ‘swelling’ in my tonsil, but I’ll be honest had he pressed a bit harder that be a slight mass and not a swelling haha. Anyway whether he was actually convinced or pretended to be convinced doesn’t matter, hopefully the ENT will know more and it doesn’t end up with me having cancer after all!

16

I’m glad that you’re being referred, and hope that you can get a diagnosis to put your mind at rest- might be an idea to take that research again when you see the ENT, as it’s so rare that they might not have heard of it either! :slight_smile:

17

That’s not just good news, it’s GREAT news!!

:slight_smile:

18

As long as the diagnosis is what I’m hoping for I’ll be good :slight_smile: Being a hypochondriac I’m still mildly scared it might be the nasty C, even if most symptoms point at the styloid. And I think the word ‘rare’ slightly puts me off as well - you never think something rare could happen to you. Although my brain does love to think about all the rare C’s in particular haha. Mind you, I DO find it odd how an elongated styloid is considered rare - doesn’t 4% mean that 1 in every 25 people will get this? That’s pretty much 1 person per classroom, wouldn’t really call that rare, uncommon maybe :slight_smile: Anyway, yes I will take my research to the ENT, haven’t thrown the papers away. Hopefully the doctor has written down Eagle’s/styloid issues as a referral reason. Now the waiting starts, I assume it’ll be around 3 months or a bit less, meaning my head will constantly be battling between C thoughts and semi-rational thoughts, argh!

20

Quick update, finally got my booking done and I should be seen in mid March, so that’s in around two months time which isn’t too bad. Mind you, when I was booking the appointment, I had a few options, and some said ENT the others said ENT service - does anyone know the difference? I could only book the service one in the end so I hope it doesn’t make a big difference.

21

Mmmm- 3 months can still feel a long time when you’re a worrier! If it’s any consolation, in the Newbies Guide there’s a bit about ‘if not ES, what else’- and there’s no mention of any unusual cancers, although I appreciate that it’s the lump that you’ve found which is worrying you.
The rareness thing- you’re right that 1 in 25 could have an elongated SP, but ES is when that causes symptoms, which is thought to be only 1 in 25 of those people, so 4% of 4%, which would make it rare. Not great at Maths, not sure what that would make it!!