Am I too young to have ES?

You can count on opinions if you upload your images, Mnfarr! :wink:

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I think your ENT’s confused! Sounds like they’re not at all knowledgeable about ES…any calcification of the ligament which correlates with ES symptoms should be enough to get a probable ES diagnosis. (Some doctors measure the styloids on their own, sone tge styloids plus the calcified ligaments).
Hope you can upload the scan!

@Jules
Considering the ENT was researching ES on WEBMD with his cell phone during the appointment, I don’t believe he knew anything about ES. I ordered another disk today and I will have the images uploaded by the end of the week. I also got an appointment for the end of November with a Dr. Matthew Neal at the Mayo Clinic in Phoenix. I saw his name on this forum, I hope he is more knowledgeable.

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I am a 21 year old male and have been diagnosed with Eagle syndrome. So no you are definitely not too young!

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Hi Mnfarr37,

I just looked for posts mentioning Dr. Neal & didn’t find any. That may mean that his name was put on the list long ago (this forum has been operating since around 2012) because someone saw him for ES/ES surgery. Some doctors on our list do stop taking ES patients or doing ES surgery. If you find this to be the case w/ Dr. Neal, Dr. Milligan has done 300-400 ES surgeries & is quite experienced. Our members who’ve been to him for surgery have generally had good results so he would be a great next step if you need to take one.

@Isaiah_40_31
I saw Dr. Matthew Neal on a post by @Jules from March 2019.

I leaned towards Dr. Neal because the 3rd ENT I saw named Dr. Rothman (who didn’t know anything about ES) recommended a neuro specialist for my next appointment.

Also, Dr. Rothman practices with Dr. Milligan at Arizona Otolaryngology Consultants. I was very unhappy with Dr. Rothman so that is why I made an appointment at the Mayo Clinic instead.

However, considering what you and Jules have said about Dr. Milligan’s success rate, I will make an appointment with him tomorrow as well.

Thank you for your suggestion!

Thanks for your response, Mnfarr37. I’m sorry for your experience w/ Dr. Rothman. Even though he & Dr. Milligan work in the same practice, that doesn’t mean the two doctors have equal knowledge or experience. I totally understand where you’re coming from though & would probably have high-tailed it out of there, too, if the doctor I saw was having to Google info about my condition during my appt.

Jules updated our Doctors List & reposted in on March 2019. Many of the names on the list have been there for years. We only remove a name when we learn from a member that (s)he has been told that specific doctor no longer deals w/ ES or has moved to another state, retired, died, etc. I am interested in knowing if Dr. Neal is still active in treating ES since his name hasn’t come up in ages so please let us know what you learn after you see him.

:hugs:

Not a good consult! I agree with Isaiah, Dr Milligan has seen many members.

Lately after I’ve been eating I have this feeling that my throat is closing on one side and I am having trouble breathing. Is this normal for ES? It’s giving me anxiety when it happens and anxiety is not normal for me, and of course the anxiety makes it worse. I can’t wait for this to go way :pensive: I wouldn’t wish these symptoms on my worse enemy. Thank you to everyone who has responded to my post and given advice. I will have my CT uploaded tomorrow.

The vagus nerve can affect your throat, swallowing & anxiety levels. I suspect your throat isn’t actually closing but the nerve irritation makes it feel like it is which sends alarm signals to your brain which causes adrenaline to be released. That elevates your heart rate which increases anxiety levels. Crazy throat symptoms are common w/ ES. I had the throat closing symptoms more during recovery from my first surgery, but as my nerves healed it gradually went away.

I’m sorry you’re struggling with that symptom. It is scary but expect it to go away after your styloid(s) are removed.

I agree with Isaiah that it’s more likely to be an irritated nerve giving that sensation rather than your throat actually closing, like the sensation of something poking the throat is. But it must be horrible, I feel for you, & with the anxiety too, I hope you can get treatment soon…

@Jules @Isaiah_40_31
Thank you for your responses. This forum has been a great resource for me to ease my worries, I would feel really alone as I’ve come to realize not many people, including doctors understand ES. I know it is just the sensation caused by the irritation, but when the anxiety starts it is a challenge to convince myself that everything is okay and it is just the ES. I am shocked at how weird these symptoms are over one tiny ligament. Truly, thank you for being an internet friend to me through this.

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I just called Arizona Otolaryngology Consultants again and they will not allow me to see Dr. Milligan because I already saw Dr. Rothman. They said they do not allow second opinion. I am pretty livid and don’t understand why they would have such a silly rule. I explained that Dr. Rothman was googling ES and he isn’t able to provide me proper care and they didn’t care.

That’s not good at all…I’m UK so not sure how your system works, but it seems crazy when there’s a doctor in the practice who is experienced with ES & you’ve seen someone who knows nothing about it! Did you mention when you made the initial appt that you had been diagnosed with ES & wanted clarification? If so, then it’s their mistake for putting you in to see Dr Rothman, so I’d think a complaint would be in order…

@Jules The 2nd ENT that I saw, that originally diagnosed me, referred me elsewhere because he does not perform surgery. He chose Dr. Rothman because he is about an hour closer to my house than Dr. Milligan.

Unfortunately, I didn’t discover this forum until after I had already seen Dr. Rothman or else I would have requested Dr. Milligan as I don’t mind the drive.

My fiancé and I filed a complaint with a few agencies and with my insurance as we believe their rule for not being allowed to switch doctors within the practice is borderline neglect considering Dr. Rothmans inexperience.

I guess this is common with specialist in Arizona, but I was unaware until now. I hope they can make an exception considering the rarity of ES.

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YIKES! That’s horrible! If Dr. Milligan is an hour further away than Dr. Rothman, they obviously aren’t in the same office so who cares that they happen to be in the same practice. That is an absurd rule!!! I’m glad you’ve been proactive in filing complaints. If all else fails, there are a couple of other doctors on the list for AZ. You could try contacting one or both of them to see about moving forward.

I’m hoping my appointment at the end of November with the Mayo Clinic goes well. I am pretty happy with how quickly they can see me, however there isn’t much information on Dr. Neal online or on this forum so I can only have my fingers crossed at this point.

I spend a few hours today attempting to create a 3D image of my CT, however I couldn’t get it to do what I would like. I was doing great for most of the steps and then towards the end it just turned into a disaster :sweat_smile:.

As a reminder to anyone who would like to comment on my CT, I have been diagnosed with bilateral calcification of the styloid ligaments (1.6 CM on the left side that is causing me pain)



I will try again tomorrow. Hopefully I can find a YouTube video to follow. Thank you for any comments or suggestions!

I thought I’d chime in… (not a doctor though). The styloids aren’t long per se, and they are very thin indeed, though might be a bit sharp at the ends (it’s hard to judge though, as in many “normal” ct scans I have seen they are sharp too). But what you have in my opinion is quite significant loss of cervical lordosis, aka military neck along all the C region.

Just a question… when you shrug the shoulders (or even better, say when you try to lift your shoulders towards the ears), do you feel some very uncomfortable restriction/tension in the inner side of the shoulder blades as if the shoulders were kind of tied to the spine? Or do they glide as free as if they were totally detached and well lubricated between the shoulder blades and the rib cage?..

Also I attached the image with the styloids marked in blue.

Hi @vdm ! Thank you for your response.
My styloid bones are not an issue. A doctor has diagnosed me with bilateral calcification of the styloid process ligament. 1.6 CM on the left side that is causing me pain. I don’t feel it on the right side.

However, to answer your question: when I lift my shoulders to my ears, the shoulder blades do move somewhat freely but with a lot of pain and grinding noises, especially on the left side. I also have grinding pain on the left side of my neck when I roll my neck.

I’m hoping when I try the 3D model again today that I can get the ligaments to show.

Also I’ve never heard of military neck, but wow after googling it I’m shocked at how straight my neck is. No one has mentioned this to me before.

Hey @Mnfarr37,

Sorry about not being specific about the ligaments and mentioning the styloids, and thanks for your answer re shoulders!

Now I probably should explain why I asked that…

See, I have been searching a lot about the Eagle’s syndrome wherever I could and analysing CTs/Xrays (again - I’m not a doctor, just a “hobbyist” who has Eagle’s myself). Eventually I noticed that so many affected people with elongated styloid (who have Eagle’s syndrome symptoms) also have “military neck”.

It’s hard to tell if one causes the other, or both are caused by some third thing, or it’s just a massive coincidence, but I started developing a theory that styloid elongation, ligament calcification etc. might be the body’s self-guarding or just stress-related response to the overflexed neck. Maybe as a way to support deep neck muscles and stabilize the head, maybe as a result of constant over-tension, maybe lack of nutrition or excess of lactic acid around spasmed muscles, maybe something else.

It’s well known that body can produce calcium deposits in shoulder tendons (google for “calcific tendonitis”), and I speculate that calcifications in stylohyoid ligament/overgrown styloids also might be (partially) developed in a similar fashion. The good and amazing thing that in shoulder the calcium deposits often are eventually reabsorbed back by the body, and perhaps it’s because shoulders naturally get more physical activity than the neck. Meanwhile the neck might be under constant tension depending on profession/stress levels/postural habits.

In your case it is especially interesting, as you have quite normal styloids but only some calcification in the ligaments. I wonder if that might be something reversible too, in case the hypothesis about military neck being related to the Eagle’s syndrome turns out to be true (at least to some extent).

Have you ever tried to discuss your neck pain with a good physio therapist? If you have a chance, I guess based on your age range, it should be possible to give the body needed physical exercises and slowly bring the spine back into the “normal” alignment (though of course everyone has their own “normal” which might be very different from person to person). Maybe it would be enough to make those calcifications disappear… :thinking:

From my own experience, I am trying to fix my “military neck” by observing my posture and re-learning basic things like walking, sitting, standing. There are moments when my whole spine suddenly relaxes and I get short-lasting but significant improvements on neck and shoulder pain, and I clearly start feeling that my whole spine temporary becomes flexible like a snake before stiffness comes back again. On the other hand, I am beyond that age when the body is very easy to “shape”, so it takes a little longer now…

UPD: I suspect military neck also might make the trapezius and levator scapulae muscles pull the shoulder blades closer to the rib cage, and that might contribute to the grinding noises - more friction between the rib cage and the scapulae, but again - these are just “educated speculations”.

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