Hello everyone, I’m still waiting for my CT to have a look at my styloids. Hopefully will happen next week. However, I went in for a tooth cleaning yesterday and asked to review my old bite-wing dental X-rays. One of them that captured more of the area behind my teeth than the others (probably due to a different angle) looks like my styloid coursing from top to bottom of the film behind my back teeth. Has anyone else had their elongated styloids captured in a bite-wing film?
I remembered a couple years ago before my symptoms started, I’d had the typical bite-wing X-rays and the dental hygienist was shocked to see my elongated styloid process. I don’t recall if she told me what side it was, but she asked if I’d had any trouble with dizziness and she seemed alarmed at the size of them and muttered something about not usually seeing them on a bite-wing. I told her I felt fine, because at that time I wasn’t having any problems.
I’m trying to have them e-mail me the image so I can post it, but they keep sending me the wrong ones. LOL I will post if I’m ever able to obtain it. It seems like gathering evidence and finding competent doctors to get this diagnosis established is nearly mission impossible and trying to get it done with my brain’s blood flow compromised is a cruel twist just to make the struggle even more surreal … sorry I just had to vent because my frustration at how long it takes to get answers / help in the context of the severity of the Eagle symptoms just doesn’t seem humane.
I did! I don’t have photos from before my first surgery but I got new films in October after learning about ES so I was able to find it. It’s on the left side of the picture. Also I understand the frustration trying to function with limited blood flow, pre surgery my left styloid was severely compressing my ijv especially when I turned my head.
So awful that the elongated styloids were noticed a couple of years ago but that no-one understood exactly what it was! But I guess technically if you didn’t have symptoms then, it wouldn’t have been diagnosed as ES- that’s only diagnosed when you have elongated styloids and symptoms…
I hope you can get hold of the images too. I had a panoramic x-ray done as I’d had jaw pain, & also a salivary gland stone, & was diagnosed as the styloids were visible on there.
Interesting that your styloids showed up on bitewing x-rays & even more so that the dental hygienest knew what they were & that they didn’t belong in the pics! I hope they can get their ducks in a row & send you the correct images ASAP.
I’m glad your CT scan is tentatively scheduled for next week. That will give you the information you’re looking for.
My styloids did not show up on bitewing, but I asked my Dentist to feel my neck (previously treated by family Doc with antiobiotics-no response,terrible pain on swallowing) and he felt the styloid. This started my road to Styloidectomy. That Dentist is my hero! Glad your road to recovery has started.
Thanks for sharing that. It makes me feel not so alone in all this but I’m sad you had to go through this - just awful. I hope you are better post surgery? Did you have the external approach? I appreciate your support!
The crazy thing was that the dental hygienist knew what it was because she said she’d had the same thing. I wish so much I could get in touch with her and thank her for the early information. Unfortunately she no longer works at my dentist’s office and so I won’t be able to give her the follow-up that I did eventually get symptoms. Definately she was more clued in about this than my actual dentist. Also, when I did get dizziness, I didn’t initially remember the conversation and got diagnosed by PT with vestibular neuritis. When that came back and with other strange symptoms, I eventually came to Eagles and remembered what she had said, so things started to make sense. I finally was able to lay eyes on the X-ray that she saw, but still working one getting it, hopefully next week. Thanks again for all of your comments and help, Jules!
Thanks so much, yes the CT is with contrast and is planned for Friday. I recall that the hygienist told me that she had the same rare thing, which is why she was so familiar with it. My dentist is not familiar at all… and unfortunately my hygienist no longer works there. I did recall that my hygienist had a nice long neck like me. I wonder if people with a longer neck are more prone to developing this problem? My dentist mentioned cervical instability as another cause of similar vascular symptoms and mentioned that this is often related to leaning over and bending the head down a lot. She said dental hygienists, dentists and surgeons, etc. are fairly prone to the cervical instability. I look into a microscope for a living, so am wondering if the development of Eagles has been associated with this type of constant head positioning? It seems that the pulling of the tendon on the styloid as your body keeps your mouth closed when you are leaning forward frequently could cause the calcification and elongation of the styloid. Have you come across any such physiologic theories? I appreciate your help in all of this!!
That is great that you had such a quality dentist with such good examination skills! Did your surgery bring you relief? I hope so! Did you have the external approach? i’m trying to plan what to do when the CT results are in.
There are physiologic causes for the development of ES which are stress or injury related such as whiplash, sports (soccer in particular because of “head butting” the ball), car or cycling accidents w/ head/neck injuries, etc. where the body senses some of the supporting neck structures need reinforcing. It does make sense that if you have a longer neck which is frequently held in flexion (as when you look into a microscope) that your brain might feel the need to “strengthen” the internal area by laying down some extra calcification. Unfortunately, the brain’s good intentions are often not well mapped out so other important structures (nerves & vascular tissues) end up suffering. It’s an interesting dilemma for sure.
Just curious
what were your symptoms when turning head?
how did you know your IJV was being compressed?
did you have any signs like Raynauds or blotchy patterns in your hands from the compression?
I am asking because I have elongated styloids. They did a TOS MRI and found venous changes (decreased blood flow). Just trying to connect the dots …
I don’t even have a CT showing my styloids yet, but I can feel them poking my tongue and the right one is sore intraorally. I can also feel the right one under my jaw and it is sore there too, so right now I’m basically self diagnosed eagles. I know they have been spotted on the dental bite wing, but only the dental hygienist was aware of what they were because she had suffered with Eagles herself. However, from my time on here I’ve come to understand that the ear ringing, that often increases when laying down is known as venous tinnitus and is due to compression of the internal jugular vein. Additionally the rocking dizziness, drunken feeling and severe brain fog are also associated with internal jugular vein compression due to increased intracranial pressure. If you google venous compression syndrome of internal jugular vein you’ll find some more information about the causes (which can be Eagles and many other possible causes) and the symptoms associated with it.
As for turning my head, I think some of the symptoms are nerve related rather than venous but the rocking and ear ringing can be induced by poor head positioning sometimes. The nerve symtoms on turning my head are predominately vagus - a feeling of nausea and occasional heart racing. Also sometimes glossopharyngeal nerve symptoms like throat / ear pain and coughing attacks can be triggered with poor head positioning, mostly turning my head far to the right or far to the left.
I have not had any Raynauds or blotchy patterns in my hands. I also have considered a component of cervical instability that can also compress the vein and some nerves, but again still waiting on imaging and more information for my situation.
I know how incredibly uncomfortable this is, so hang in there and I hope you will find the answers and help that you’re seeking soon!
Thanks Isaiah_40_31. I did have whiplash when I was a teenager in a small fender bender when I was in the back seat of a friend’s car with no head rest. Probably a combination of things are at play here. I know that microscope work and other professions like surgeons, dentists, dental hygienists are at risk for cervical instability that can also induce internal jugular vein compression like symptoms and some nerve symptoms, so it’s possible that I’ve a component of that as well at play. It sounds like wearing a neck brace to support my head would give me some relief if there is an element of cervical instability, but that if the problems are from something else (like Eagles), then the collar would not help. I’m thinking of giving it a try just to see. Thanks again for all of your helpful information!!!
I had a whiplash injury from a car accident when I was in my early 20s. I suspect that may have been the stimulus for my ES. It just took another 30+ years for the symptoms to show up.
@Dizzylady, I am doing much better post surgery. Both surgeries were done externally by a vascular surgeon with an assist from an oral surgeon.
@bmcdiddie, I was getting headaches from turning my head and nearly passing out if I kept it turned. Based on that my neurologist ordered a CT and ultrasound with head turned in a provocative position. From this we knew my veins were being compressed, and the CT found the eagles. They also diagnosed TOS with the ultrasound and other tests - some sort of sensor on my fingers and raising my arm with my head in different positions - but we haven’t addressed that yet.
Hi Dizzylady, yes I had external surgery. I had one of the possible (though not wanted) complications of injury to the hypoglossal nerve that effected my tongue and speech. I had speech therapy, and my tongue is almost normal, no one can tell my speech was ever effected. My jaw gets fatigued if I talk or chew too much. But, I would do it again in a minute - so much relief from the swallowing issue. My styloid extended 7-8 cm to my hyoid bone with ossification, a whopper. I hope you are progressing with your treatment, prayers for success!
@Pindergirl67 - I’m so glad to read that your surgery has made such positive difference for you! I had the same problem w/ tongue & speech post op but didn’t get PT for it. I did talk to my friend who’s a speech pathologist, & she gave me some tips. It was a glorious day when someone said to me, “You’re talking normally today!” So good to have confirmation that my tongue was healing.
Hi Pindergirl67, 7-8 cm - Wow!! I’m glad you are better after surgery! Truly wonderful!!! That sounds like it might have been pretty scary to find your speech was affected after though. I’m glad you have healed up and have found relief. I wonder how long it took to regain your speech? I’m the sole breadwinner for the family of 4 and so I’m concerned about how much time I might be away from my job, since as a contractor there are no paid sick time etc. I’m trying to figure out which surgical approach is best. Sounds like the external approach usually has less complications and gets more or most of the styloid out usually, but the intra-oral approach is what is offered by the local surgeon here in Edmonton. Anyhow, before I go too much into this, I need to obtain my CT results, which I finally had the scan yesterday, so hope for some answers by early next week - finally!! Thanks for sharing your story and it is encouraging to meet people that have gotten better from this!!
Everyone is a bit different in how quickly they recover from ES surgery. Some people have gone back to work the same week they had surgery whereas others needed 6-8 weeks of recovery before they felt ready. We recommend listening to your body. If you feel pretty good by days 5-6 post op then starting back part-time & working up to full-time at that point is worth a try. I think most people find taking at least 2 weeks off is a good plan.
As far as losing your ability to speak goes, there might be less risk of that problem w/ intraoral surgery. From what I understand, a knowledgeable surgeon can remove the styloid to the skull base even via the intraoral route.
We’ll look forward to hearing that your CT shows if you’re comfortable sharing.
