At the beginning.. Any advice most welcome

General
1

Hi all,

I’m new, I haven’t been diagnosed with ES but my ENT surgeon told me about ES and showed me pictures on his computer of the styloid.

Having read lot’s on here and the lack of knowledge - in the medical community - about the condition. I am very pleased that my ENT discussed it with me and without that I don’t think I would be in the position I am now.

The position being that I think I have ES, whether that be may be a fractured styloid, or developing ES. I don’t have any pain, just the protrusion which - although my surgeon spoke of ES - he convinced himself during our consultation that it “could NOT be that” as I “haven’t had it since birth”. So although he knows about ES - he doesn’t know how it comes about - i.e. that the styloid can grow/become calcified/ elongated or can fracture - all of which can lead to my symptom of a hard mass protruding from my tonsil area.

He said he thinks it’s a tonsillith. I was confused by this conclusion during our consultation as I have had the odd tonsil stone which has always been accompanied by bad breath/taste in my mouth and has made it’s way out over time. Also, this mass isn’t inside the tonsil itself but a bit lower down and feels like bone.

On reflection - I think during our consultation his subconscious told him it’s the styloid he’s palpating (this gave me pain radiating into my ear area, head and neck). It was then that he showed me the pictures of the styloid on his computer. But he went on to convince himself and me that it must be a tonsillith and not ES, as ES he said “is a congenital condition”. So he’s knowledge didn’t connect to his instincts and he went with his knowledge without gaining further knowledge through a scan or further options.

So I left, feeling bamboozled, having signed the consent form for a tonsillectomy which he said would be in a few weeks. Luckily the few weeks prediction to tonsillectomy turned out to be 8 weeks and I have since experienced a cracking sound in my head/mouth on waking up over the weekend and thought my teeth/tooth had broken but on checking nothing was amiss and this reminded me of having a similar experience around the time of finding the mass in the tonsil area and got me thinking about the picture of the styloid bone he’d shown me and I found your site and everything started to make sense.

But the lack of other symptoms makes me doubt somewhat that it is ES. I keep thinking about the cracking sound and that I sleep on the side of the mass and think that maybe I am tensing and have caused myself a fractured styloid in my sleep.

Do you think this sounds likely? Do I need to worry about the cracking?

I have emailed my ENT surgeon, to tell him that I have experienced this cracking sound and have done some thinking/research and think there is a strong possibility that it could be the styloid and have asked for a CT scan prior to the tonsillectomy - to rule it out. I sent the email on monday and have been told by his secretary that he’s away until next week so I am anxiously waiting to hear back from him.

I want to be ready to offer him a clear rationale to why I think it is ES and would welcome any advice from you?

I have ready all the newbie posts and am going to put together some paragraphs from the journal articles together - so I have literature to backup my rational - I feel I might be going over the top but I think it will help me with holding my position/power - even if I don’t need to use it.

I would welcome any feedback as I want to be really clear - and although I know I am articulate - underneath I have immense anxiety - which tends to get in the way of me being able to communicate myself - especially over the phone which it is likely to be - if he rings to discuss my email next week.

Thanks for reading.

Thanks for this site and all contributors for the calmness and clarity it has brought me.

Warmly
Sarah

2

Hi SarahV!

Welcome to the ES forum & so glad you found us. It sounds like you have done a wonderful job of “sleuthing” on your own to pursue the suggestion of ES made by your ENT doctor.
Not everyone who has ES has pain. It has been seen that there are people who have it who are asymptomatic & have no idea they have it. Even though your symptoms are not painful at this point, it doesn’t mean what you’re feeling isn’t ES, and I think you’re very wise to take info to your ENT that you’ve found on this site to back up your thoughts & observations regarding the possibility you have ES. Obviously a CT scan will be the ultimate confirmation or denial, but from what you’ve said, it does sound like a distinct possibility you do have ES.
Though I don’t know what causes the cracking sound you’re hearing, I do know there have been others on this site who’ve also experienced it. If your stylohyoid ligament is calcified it’s possible it’s “catching” in certain head/neck positions & then making the cracking sound when you change head/neck positions as it “lets go”. If it doesn’t hurt, then most likely no damage is being done. It’s just letting you know its there.
Should it come to surgery for you, there are a couple of surgeons in the UK who have done ES surgeries w/ Mr. Axon in Cambridge probably being the most experienced. I don’t know how far that is from you or if you can afford to travel but now you know of a good resource.
I hope this info is helpful for you. Please continue to post questions or concerns, & we’ll do our best to answer.
:blush:

3

I would perhaps hold fire on the tonsillectomy until you find out more, & you’re right to push for a CT scan. When it’s requested, make sure that they evaluate you for ES & look at the styloid length, angle & width, & also look at the stylo-hyoid ligaments for any calcification. I would ask the ENT consultant to postpone the tonsillectomy until he gets this report; at the end of the day, no-one wants to go through unnecessary surgery, & I’m sure with the NHS as it is, he wouldn’t want to do operations if they’re not needed…
As Isaiah says, some members have felt cracking in their throat, so it could be calcified ligaments you’re feeling. I know some members have had fractured SPs, but that does tend to be pretty painful, so I would think it’s unlikely you’ve fractured yours at night. But we’re not doctors on here, & weird & wacky symptoms can be part of ES.
True ES is elongated styloid processes, or calcified ligaments which cause pain, but given that you have symptoms of cracking & this unusual mass in your throat, it’s definitely a possibility.
You sound like you’re doing everything you can to educate yourself & prepare yourself to speak with the consultant. If you’ve looked through the Newbies Guide section hopefully you’ll have seen the bit about possible causes for ES- that’s something you could discuss with him as he’s wrong about that. The only thing I can think of is to perhaps email him some links to research papers which have been published about ES causes, or anything else which you think would be helpful, & hope that he doesn’t take offence! And as Isaiah says, maybe consider seeing someone more experienced after you get the scan results?
(Skull base surgeons/ Otolaryngologists are a good bet as they’re used to operating in that area otherwise). The doctor I saw to get my ES diagnosed was hopeless & only too glad to send me to someone else!!
I understand how you feel talking to a consultant- I forget everything I plan to say too, so maybe get everything written down before the call?
Good luck, let us know how you get on!

4

Sounds like you’re a very well informed consumer/patient Sarah. I would say go with your gut and get more info about what, exactly your styloid is doing and what it looks like.

It also sounds like you have a pretty good doctor. He’s struggling because he read about Eagle’s during that one class in school and never touched on it again. And, in med school they’re told over and over again to look for the obvious answer “when you hear hoof beats look for horses, not zebras.” You, my friend, may be his zebra. >>>grin<<<

Hang in there and proceed with caution, don’t agree to anything invasive until you, yourself, are completely sure.

azurelle

5

Thanks for your replies, I “may be his zebra”! Love it!

Thanks so much, it’s really good to hear all your comments it allows me to breath and get my facts in order for the discussion.

I’m going to spend some time over this weekend get more information about the what, where, how etc. All down on paper for next week’s conversation, fingers crossed he’s open to it.

I will report back, and thanks again.

Warmly
Sarah

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6

Hi All.

It has been a while since my first posts and lot’s has happened.

I contacted my ENT surgeon and pushed for postponement of my scheduled tonsillectomy and requested a CT scan to check if the mass in the area of my right tonsil region was the styloid process.

At first my ENT surgeon said, via email from his secretary, that he’d carry on with the tonsillectomy but had ordered a CT scan and MRI to better show the anatomy but that the scan may or may not be before my surgery.

I emailed back saying I welcomed the scans and would prefer to postpone surgery until after the scans and stressed the link between endocrine disorders and ES (which I’d read about it on here - I have a pituitary tumour) as further evidence of it being a strong possibility of it being the styloid process that can be felt. I also sent him three of the papers I got off here.

He rang me then, and agreed it was sensible to wait until after the scans but stressed that ES can’t be diagnosed through scans - as “how long does the styloid process have to be, or how calcified does it have to be before it causes symptoms” - and that “Eagle’s syndrome is very specific pain when you swallow shooting in your ear”.

He stressed the need to not assume anything and that he needed to keep his “cancer hat” on. But that whether or not it’s a tonsil stone or Eagle’s “the journey finishes with my tonsil in a pot being analysed”.

He ended saying let’s see what the imaging says first - then we can meet again and see where we are.

I was so pleased I was getting the scans and I could cross any further bridges when I got to them.

A consultant radiologist assessed my ENT surgeon’s request for the two scans, and a MRI was scheduled and a CT would be scheduled dependant on the result of the MRI.

I assumed the MRI was to check if my symptoms are due to a tumor or any other cause other than being the styloid process. But otherwise a CT would be needed to assess the styloids.

I had my MRI a couple of weeks ago and today received a email saying the results indicate that “it was within normal limits” (I’m not sure what they mean by “it” - but assume “it” means my right styloid) and that a CT scan was not warranted. A tonsillectomy is the next step.

I am pleased the MRI hasn’t shown up anything and from what it says in the latest email I think they have deduced the styloid “is in normal limits” but as, from what I have read on here, MRI’s are good for looking at soft tissue structures, but don’t always show calcified styloids/ ligaments so I don’t feel confident that this MRI can be used to definitively rule out the mass being the styloid process?

I’d really appreciate it if I could get people’s feedback on this ?

I’d also welcome your thoughts on the above and I have the following questions which I would welcome any thoughts on:

  • How could they have measured the styloids via MRI?
  • Could my styloid be “within normal limits” and still be the thing poking through near my tonsil?
  • Why is my ENT surgeon so set on removing my tonsils when the thing poking through is near but not on or abutting my tonsil?

Thanks for reading and any responses would be most welcome.

Thanks again.

7

SKC100 -

MRI scans do show soft tissue & calcified/bony tissue but they show soft tissue the best. The styloids &/or calcification on the s-h ligaments won’t show up as well on an MRI & measuring them from an MRI image may not be as accurate as w/ a CT scan. A CT scan will clearly show the bony structures & give an accurate look at what’s really going on in that area of your neck. You should request to see a copy of your MRI scan & have your ENT or a radiologist point out what (s)he sees that seems to be “normal” about your SP.

As you know, your surgeon is wrong about ES having a particular set of symptoms. Those he mentioned are common but reading through even a few posts on this forum would be very enlightening for him. He doesn’t seem to know the havoc elongated styloids/calcified ligaments can wreak w/ the carotid arteries, jugular vein & cranial nerves - each of which produce symptoms of their own which are totally “outside the box” of the “normal” symptoms.

As far as being able to feel your styloid poking through near your tonsil, there are several possibilities: 1st & most likely is that your SP is elongated or your SH ligament is calcified & pushing on your SP; 2nd & less likely, you have a normal length SP (2.54 cm - some say up to 3 cm) which is extremely angled or thick or both. 3rd, it’s actually whatever your ENT surgeon thinks it is.

The length is the first thing to be assessed in diagnosing ES but length isn’t always the cause. Occasionally an extremely thick or steeply angled normal length SP can cause symptoms. Additionally, stylohyoid ligament calcification will cause symptoms similar to an elongated SP. My ligaments were partially calcified, but it was my elongated SPs that caused my symptoms.

I suspect your ENT surgeon wants to remove your tonsils because that’s his area of expertise. It’s something he’s good at & comfortable with. Eagle Syndrome is likely a very gray area in the back of his mind that seems like a remote possibility to him. He wants to focus on what he knows.

PLEASE keep pushing for the CT scan you want & postponement of your tonsillectomy until you are definitively diagnosed one way or the other regarding ES. It’s your body!!! Don’t let your surgeon make you feel like you don’t know what’s going on. You’re doing your homework & do have a clue!!

I will be praying for you to be able to stand your ground & get the CT scan you desire before you have to face surgery.

:slightly_smiling_face: :sunflower:

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8

You can call the imaging facility and request a copy of the MRI and radiology report (you’ll probably need to pick them up). You can try looking at them yourself (sometimes it’s hard to figure out what you are looking at but you can try) or you can have a doctor look at them and show you the styloids if they can be seen. I’ve had Dr’s show me the styloids in scans but the best view I’ve had has been by using a 3d slicer program that someone had recommended on this site. I’m not sure if it will work with MRI scans but does work with CT’s.
styloid%20process%20st%20ant

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Thanks so much for your comments Isaiah, I am feeling more confident with your advice and I have a further appointment with my ENT in a few weeks and have a dentist appointment in a few days so am thinking of asking for a panoramic x-ray to see if I can see it that way. Thanks for your kind words :sunflower:

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Thanks Eagle’s nest, I will ask to view the mri and see if I can get a copy too. Thanks for your advice. :slightly_smiling_face:

11

I agree with the above advice, & well done to you for ‘doing your homework’ & not accepting a surgery which might not be necessary… A panoramic x-ray should hopefully show if there’s elongated styloid processes; I was diagnosed with that. It might be easier than keep discussing the point with your ENT!
Also are there any doctors on the list near you, who would be more familiar with ES? It doesn’t sound as if this ENT knows much about it, so it might pay you to consider surgery with someone a bit more experience?
Good luck & let us know how you get on!

12

One of the fist questions that my ENT asked was, do you get a clicking noise at all? That alone tells me it’s a common symptom from ES. When he sent me for a CT I asked if there was another scan with less radiation. He said there are others but the CT is the best for this kind of imaging.

I agree, push for the CT. We have to be our own best health advocates. We are so lucky to have google!

13

The clicking sound can be an ES symptom but not everyone has that so there are other symptoms that need to be considered as well.

Thank you for that input though. Good to know your ENT hasn’t limited his/her symptom list to ear pain and/or a sore throat!

14

I hear ya, I actually don’t experience clicking :blush:

15

Thanks for all your help. I have my x-ray, I can’t seem to see anything myself but thought I’d ask if anyone has any experience in spotting these things.

Thanks again and I look forward to hearing anyone’s take on the image.

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Not being a Dr or Radiologist it’s hard to say. Your x-ray looks a little blurry and it may be difficult to see the whole thing but I do think at least part of them are visible. You can compare them to my panoramic where they are clearly visible.

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only amateur opinion… but the part to the left of the jaw looks like a very lumpy angled styloid process to me. It’s not the best pic in the world, but it looks quite thick as well; width & angle can cause problems as well as the length, which a lot of radiologists & doctors don’t realise. Which might explain why they though it was within normal limits, & as has been said people’s idea of that can vary anything between 1.5- 4 cms has been mentioned in research papers as ‘average’!
So, are you going to go back to the ENT with this? If so, I would take some copies of research papers showing the angle etc. can cause problems with you- there’s some mentioned in the Newbies Guide section. Good luck!

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18

Thanks for your replies, I have tried to find a panoramic x-ray online showing normal styloid processes to compare but can’t seem to find one.

Jules, do you mean the left side looking at the picture? i.e my right side in reality, as that corresponds with my protrusion through my tonsil area.

I still keep going back to the fact that I don’t have any other symptoms.

I see the ENT surgeon next week so will take my x-ray and ask to see the mri results too. I will take all the papers I can get hold of as well.

Thanks again.

19

Yes, sorry, left side on the picture, your right side of the face.

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Thanks so much Jules, you are so kind. It is very much appreciated.