Protuding into mouth

Looks like its protuding into my mouth, white bone coming thru near tonsil.
As anyone had this???
Does this mean I need surgery now have been putting off. By using painkillers.

That sounds really grim- I’ve seen a pic online of someone with that- feel for you. I would think that would (as well as being really painful!) be quite an infection risk? Have you been to see your doc about this recently as it’s getting worse?
I have to say that I’m really glad I’ve had surgery, it wasn’t as bad as I was expecting, although I did have a great doctor. If you can find an experienced surgeon it does lessen the risks/ complications.

Going back to docs tomorrow as it was a year or so ago that I first got diagnosed.
I cant find anyone else with this.
Thankyou for your views on surgery so glad it went well and not as bad as you thought.
It scares me do much.

I have it on both sides. One Rt side in the middle of fossa in front of my tonsil. The Lft side down by my jaw. When I “Googled” it I had a hard time finding pictures, but when I did find one, it was NOT encouraging. So I agree with Jules. Just know that there are people like us and make an appointment to see your doctor.

Are you or have you had surgery?

I’m in the processes of seeing surgeons. My next apt. is December 9th. There is evidence that my SP is pressing on my ICA - so I need external removal.

Wow. I was worried that is going to happen soon to my throat. Best of luck to u

Thanks :wink: both sides are approaching 5 cm

Yes I’ve had it on both sides and had the surgery done, don’t do it! all you will see is that bony protrusion gone and no symptom relief. You need a few doctors who work together, an orthopedic, rheumatologist, neurologist, oral maxillofacial surgeon.

Teresa its sad to hear surgery didnt help for you. May i ask what kind if surgery you had (intraoral or extraoral) and how much of the styloid was removed?

I am coming into this conversation late, but I had elongated styloid bones on both sides with the right side protruding in my throat. The ENT could feel it in my throat. I had throat, neck, head and ear pain. I decided to have the surgery. My surgeon removed part of the bone as well as both tonsils. The recovery was not pleasant, but so far the outcome has been 100% worth it. I do still have some tingling and weirdness in the back right side of my throat, but no pain. I am grateful I had the surgery.

I had the same. 40mm Could feel bony tip with my finger. No pain if the doctor touched it. I felt like I couldn’t swallow and had occiptal pain. Both went away after the surgery. First surgery intra oral. Went pretty good.

Styloid grew back or wasn’t taken off enough. Second surgery was not as pleasant afterwards but I could handle it. The first night I couldn’t breath through my nose. Just mouth. So sleep was not an option and nurse couldn’t help. Next day I bought nose strips and slept the whole night. I highly recommend having some on hand just in case.
I had a very good doctor.
My right side is not growing the same direction. Someday. But I will try the outside next time for my right elongated.
Hope this helps.

Teresa, I’m sorry you didn’t get relief. It sounds like perhaps you didn’t get enough of the styloid taken out. I know I still had problems until I had revision surgery. Have you ever been able to see a doctor with more experience with Eagles? Have you been able to get a current CT scan to see if you still have styloid left?

I’d like to mention that most people on the forum do get relief when they have surgery that gets enough of the styloid out.

I think it’s actually a good thing to hear your story because forum members should be aware that not all surgeries are successful. There’s always a risk.

I hope you can get some help and hopefully get more relief in the future. Have you been able to check the doctors list? There are some experienced Eagles doctors in Philadelphia, which I believe isn’t too far from you.

One other thought - an experienced ENT is the kind of doctor that helped most of us with Eagles. If there are other conditions involved, then other types of doctors may be useful as well. But if the condition is primarily Eagles, then generally other types of doctors aren’t involved.

All our situations are so different though that it’s hard to give hard and fast rules. What works for one of us may or may not work for others.

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I had mine poking into my throat too. The surgeon took off almost 4cm and whilst it was very intense surgery, as I had it done from inside my mouth, I can swallow without difficulty again and don’t have that awful constant lump in my throat. The pain and crunching noises in my neck have now gone and my ear is no longer constantly aching. I guess I have had a good outcome!

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My right styloid was palpable through my mouth as well. It was elongated with calcified ligament attached and fractured, it was 5 cm in length. I had extraoral surgery 9 weeks ago and they took the styloid out pretty much completely up to my skull base. Recovery was hard, for the first 5 weeks i almost regretted doing it. Allthough the feeling of a lump, swallowing difficulties and neck pain vanished right away, i had all kinds of new pains and aches such as first bite syndrome and very intense neuralgia-like pain in my cheek and jaw joint area, especially after eating.
Now, 9 weeks post surgery, i can clearly say that it was worth it. The healing takes time, longer than i expected, but my ES symptoms on my right side are pretty much completely gone. I still have first bite syndrome but it is slowly getting better. Another postoperative complication is numbness in my right cheek, around the scar and ear lobe but the feeling there is coming back too more and more and even if it stays like that I could totally live with it.

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What is first bite syndrome?

I’ve been told that you have to leave enough in to reattach to muscles. Mine wasn’t calcified on the right, it was elongated, sticking through mouth and throat. I feel my heart beating in my neck and my resting heart rate is 113. I went to an Orthopedic surgeon the other day who referred me to a rheumatologist. I have degenerative disc disease with osteophytes indenting my esophagus. I’ll keep you all posted. Thank you for responding. XO

I don’t think they were correct when they told you there has to be enough styloid left to reattach to muscles. A lot of us have had our styloids removed completely and don’t have any problems with functioning at all. In fact, that’s a real common question we get over and over is if we lose some ability to swallow or whatever when we get the styloid removed and the answer is no, we don’t seem to lose anything.

We aren’t doctors here, so the only thing we can do is relate our experiences and what doctors have told us.

I don’t think your doctors are very knowledgeable about Eagles.

I actually had sort of a similar situation as you with a disc in my neck that was also causing me some pain. I had the disc replaced in the middle of my Eagles “saga” and I’m glad I did because that pain is better, but it didn’t affect my eagles type pain at all.

Feeling your heart beating in your neck and an elevated resting heart rate are pretty common Eagles symptoms.

I really believe that you need to get to a doctor who is knowledgeable about Eagles.

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Chelle, I’m so happy you had a good outcome. Thanks for sharing.

Is the doctor that did your surgery on our doctors list?

Yes, im familiar with that heartbeating inside neck. It never came back after surgery though.

Im actually not completely sure what they did with the muscles that are attached to the styloid. As far as i understand they start at the very beginning of the SP so i suppose they have cut the styloid only until that point. I will definately ask for it at my next follow up. I know that my stylohyoid ligament is “gone” but im curious what happened to the stylomandibular ligament, styloglossus muscle, stylohyoid muscle, stylopharyngeus muscle which all start from the SP. I actually dont feel any of them missing or dysfunctional.

First bite syndrome is a post operative complication that seems to bei common after surgerys in the parotid region. It is thought to habe to do with surgical dammage or irritation of the sympathetic nerve system of the parotid gland. Its symptoms are: A very harsh pain with the first bite of every meal that fades away with the next few bites.