Eagle Syndrome as well as other bone abnormalities

Hi team
I suffer from bilateral Eagle syndrome, and have recently had surgery to reduce the left side styloid. At the same time as that surgery, my surgeon also removed a large mandibular torus (bone growth) from my left side lower jaw.
The plan going forward is to have a second surgery in 6 month or so to shorten the right side styloid, and also remove the other mandibular torus from the right side of my lower jaw.
Over the years (I am 62) I have previously had the growths on my jaw reduced - they continue to grow - and I have them on the outside of both the lower and upper jaws.
I also have other bone ‘anomalies’ or abnormalities - as do my siblings and children.
So: I was wondering if there is a correlation between Eagle Syndrome/elongated styloids and ‘other’ bone abnormalities - and in particular the incidence of mandibular tori (plural of torus).

Is there anyone in our community who may know if this is so or not? Given both my children have similar bone anomalies as I do, I have warned them to keep an eye on any neck/head scans they get to see if they have elongated styloids - but I would like to know if the presence of e.g. mandibular tori is an indicator that a person is more likely to have Eagle Syndrome now or in the future?

Does anyone out there know if that is the case or not?

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I have to say that I’ve not heard of anyone having mandibular torus, but others have definitely had bone spurs; there seems to be a common thread with quite a few members having calcium regulation problems, thyroid and parathyroid problems, (parathyroid gland is responsible for calcium regulation).
How are you feeling after surgery? I hope that it’s helped with your symptoms? Is your surgeon on our list, and if not, would they be willing to go on? Our NZ members really struggle to find anyone to do the surgery…
Best wishes for your healing :smiley:

Hi jules
thanks for your response. About the bone abnormalities, I was just wondering - hopefully some other ES sufferers will respond so I can gauge whether it is common or not.

My surgeon was Kevin Smith - he is on the NZ medical register (on which there are many “Smith” but only one - I think - Kevin Smith), and in my post on the support group site describing my progress, I give the information about him. He is primarily a cancer surgeon specialising in ENT cancers, and as such has removed styloids to expose cancer tumours in some operations, so gained experience to do the ES-only operation. He chooses his ES styloid patients very carefully, to ensure the highest likelihood that the surgery will have a positive outcome for the patient.So, on that basis I am happy to get him on your list, but as to wh

With me, one of the things he did was reach a finger into my mouth and press on the tonsil - the CAT scan of my neck/head shows that the styloids (both sides) are touching the tonsils - to put light pressure on it against the styloid. It hurt so much it took over two hours for the pain to be completely gone! As he pressed I involuntarily jerked my head backwards to get away from the pain. He said “that’s the reaction I am looking for” and said that in cases like mine he has about an 80% success rate.

A month after the surgery I saw him again and he was very pleased with my progress, and did the same press check on the right side and while it was not as strong as the left side, it still made me jump and it lasted about 15 minutes. So, now he is scheduling me for a review in 6 month, and if I am happy with the left side at that point he will do the right one.

As to ‘has it worked’, the scar is barely visible but the whole length of it has a lumpy feel which is slowly reducing, as it the pain associated with it. The long term ES pain does seem to be a little better, but I will reserve full judgement until the surgical trauma has gone.

So all in all, happy with my progress so far, and really happy to finally have found a surgeon to help

Nga mihi

Ian Tollemache

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Thanks for that info! He is on our list already I see…Very glad too for you that you were able to get surgery…I hope that as time goes on & you heal more you see even more improvement in symptoms! And hope you get some response about the bone abnormalities…
Best wishes :smiley:

Hi Lofty99,

I’m sorry for the slow reply. I’ve gotten a little behind on forum matters recently. I also have mandibular tori on the left & right but under my tongue. They get irritated when I eat things like sourdough bread w/ a tough crust, but they have never needed to be shaved down. I don’t think they are related to ES as my mother also had them (to a greater degree than I) & she never had ES.

We have seen familial ES on our forum with several families having one parent (usually the mother) & several of the children who all are diagnosed w/ ES. @GodsBlessing is the first of our members to mention that she & some of her children had been diagnosed w/ ES. That was back in 2014 shortly after I joined here. There are at least two other members but I don’t recall who they are now.

As Jules said, there can be a correlation between thyrooid or parathyroid function/dysfunction & excess calcification & that trend can be hereditary. In my family, I’m the only one who’s had ES (result of a whiplash injury in 1975?), but cysts in the thyroid are passed along from generation to generation. All of my siblings have them as well as my son.

I also want to add that in cases of bilateral ES, the remaining elongated styloid can generate symptoms that can make it feel like the first surgery didn’t really help. Please just keep that in mind when considering whether or not to have a second surgery. Some doctors don’t realize that the remaining styloid can cause symptoms that even cross over to the side where the styloid has already been removed & will decide not to do a second surgery because the first one “didn’t work”. Please don’t get caught in that trap. It took two surgeries (one for each side) for my ES symptoms to go away. I would still be in pain today if I hadn’t had my second styloid removed.

Thanks for your reply
I know that it won’t be every ES sufferer has tori, or everyone who has tori has ES, but was wondering if the incidence of one is an indicator for the other - not that any of that will help people here, just interested for diagnostics

Yes, I am aware that the remaining side can cause ‘phantom’ symptoms on the other side, so I am going to say ‘worked’ if I can continue to get reduced/weaker symptoms - which it does look like will be true once the scars heal fully. Still can’t believe i got lucky enough to find a surgeon and get it done in the time of covid - maybe the hospital system is trying to make amends for the damage they did to me when I had cancer surgery :slight_smile:

Once again, thanks for your time


I do hope there are others who will reply to your question. I’m sure we’re not the only two who have the tori on this forum!! Sorry I can’t answer if there’s any correlation between them & ES.

I’m glad you were able to have your surgery during this COVID time & indeed they did “owe you” for the cancer botch up. I’m glad you’ve recovered from that. I also recall your wife had cancer. I hope she is in remission!

Hi, I haven’t been on the forum due to other health issues but saw this in the weekly digest and wanted to respond.

I have had a bit Tori under the tongue since I was little, just enough to make bite wing X-rays at the dentist hurt a bit.

I began to have severe ear pain and swelling under the ear in May 2016. It took 4 years to sort out that I had an elongated styloid, and that it is atypical styloid syndrome, pressing on various cranial nerves.

Bones Go Wild
6 months later in November 2016 or so I noticed that when I pulled my lip up I had substantial bone growth on the outside above my upper teeth going back towards the left. (Called buccal exotosis). It has continued to grow since then all the way to the back of my gums. It is also growing on the right side.

It has been so big I can’t even get a small toothbrush up there and swishing my mouth doesn’t remove food and bacteria. It is pushing on my sinuses and creating additional pain. I am going to have it removed. That, along with a ridiculously dry mouth, caused dental decay in every tooth. (Longer story there).

The Tori under my tongue grew so much that the bone was almost even with the top of my bottom teeth.

“It must be caused by this and nothing else”.
Apparently I subconsciously clench and almost shut my teeth together for a microsecond and this causes Tori to grow. I had an appliance made for my bottom teeth that I wear 24/7 except for cleaning it. Everyone said that I must have sleep apnea. Apparently clenching and bruxism is most often caused by sleep apnea. The appliance is supposed to stop this.

My argument against this is that I do this when I am awake. I had a test which was negative but borderline. My other argument is that Tori are still growing.

How Spiky Bones led to my diagnosis of ES
Then the most bizarre thing happened, which makes me believe this is related somehow to ES. June 2019…

Under my tongue towards the rear, where there was minimal Tori, about an inch below both bottom rear molars on each side, sharp spike like bones started poking through the mucosa ON BOTH SIDES at the exact same time. OUCH

No one couldn’t see them because my tongue and the Tori were covering it. A fluid filled bubble painful thing popped up on the left side, leaving the dentist at my pain clinic at the university of Washington and his friends to scratch their heads and shrug. “It shouldn’t hurt” seems to be the mantra of doctors everywhere.

I saw my Orofacial specialist and requested/begged for a 360 CT scan even though I had one a year prior. I had it done and he sent it off to be read by a specialist.

Keep in mind that it is now late November 2019. So dem bones have been growing… I come back in as the CT results are back and FINALLY he could see them. He was so amazed, as far as he knew this hadn’t happened before. He took photos.

So the CT scan results gave me a diagnosis of ES.

I had the Tori and spiky bones removed by an oral surgeon.

I am having a parathyroid blood test done as a result of another medical issue. I will let you know if anything turns up

Thanks for sharing that with me. I too have had sharp spikes come through, at the back on both sides. Started carving my tongue up badly so had them removed some years ago.
It sounds like your growths are more severe than mine - what gets me is that the growth never seems to stop, so periodically need cutting down again. Gotta hope that the styloids don’t grow back !


That sounds really nasty, very glad that you were persistent & got the CT to show what was going on, & that you were able to get them removed- I hope that they don’t grow back! I hope that you’re able to get your other health problems sorted, & thanks for checking in :hugs:

WOW, Gwendolyn! You have been on a tortuous health journey for a few years now. I’m so sorry!! Adding the oral bone growth to ES (or vice versa) does make it seem they are related.

I also clench but only wear my dental appliance at night. In my case, the clenching hasn’t caused any changes in the tori or caused other bony growths in my mouth. It has done a number on my TM joints though.

I hope getting the new bony growths removed will put you a little closer to being able to deal with your ES. :heart:

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Oh boy…. My Orofacial jaw specialist is going to be SO excited to hear about someone else with horrible painful bi lateral spiky bones.

I wonder if that is different from Tori, even if it might be growing out of it. I assume you don’t have sleep apnea or grind your teeth…

This is really interesting. I need to go get my parathyroid tests done.

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Yep, fun and games. My siblings also have the tori - 2 brothers and 2 sisters - so I suspect my 2 daughter who both have other bone abnormalities are going to get the tori too - and I have advised them to get neck/jaw scans periodically to look out for ES as well.

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