I have finally had a CT scan, I pushed with all your advice and today I got my CT scan results and I have elongated styloids, especially on the right side!
I’m due to be having a follow up appointment with my ENT surgeon a week on Wednesday.
I am in shock but also knew it was eagle’s.
It’s been such a long journey, although I know others have been on the journey much longer.
I still don’t have any pain which I am very thankful for.
I want to take this opportunity to thank everyone for supporting me and helping me with the evidence I needed to get this diagnosed.
I suppose a new journey is now going to begin, I want to be referred to Mr Axon, in Cambridge.
I’m so glad you have a definitive diagnosis. Your persistence in receiving a diagnosis has paid off. As scary as surgery may seem, Mr. Axon is a great surgeon (based on others’ comment on this forum), & I hope you’re able to get a referral to see him soon. I know getting appointments can be slow going in the UK, but you’re heading in the right direction for a good outcome.
Please continue to “check in” & keep us informed as your journey progresses. I’ll be praying for you.
I have received my scans and downloaded the 3d slicer program following the advice on here.
I am shocked by the look of the length of, what I think is, my right styloid!
The report does not give any information on the length, it just says: “There is no mucosal or some mucosal abnormality or evidence of a soft tissue mass. The styloid processes are elongated bilaterally, more so on the right than the left, which may be giving rise to Eagle syndrome”.
Here is a couple of screenshots I have taken, not sure if it’s a good quality or not.
Definitely long! And the other side looks pretty angulated as well, which could cause problems. I think you’ve probably got your answer looking at these images!
I’m not certain what I’m looking at is styloid and what is vertebral artery. Your left one appears to deviate back and go through the transverse foramen of C1 so it might be part of the styloid overlaying the VA, and your right side lines up with where the vertebral artery is supposed to go, too. Do you have any sagittal views to compare?
Thanks all for your comments, Julianeagle: yes, I see what you mean, I have found another programme and think it shows them better, but would welcome your thoughts…
MUCH better view. Right side appears intact all the way down, left looks partially calcified. Since you earlier mentioned the MD heading towards tonsilliths—do you have a transverse plane angle that shows the distance between your oropharynx and the styloid? something like this
Hi Julian, thanks, yes I have screenshot these, the right styloid comes in to view when I get to my lower teeth, which is in line with my tonsil and the left comes in to view higher up. I have measured from the right ES to the edge which is 11.87mm.
I agree w/ julianeagle - the left styloid looks long & the s-h ligament looks partially calcified which in effect creates even more opportunity for ES symptoms.
Also I don’t think your three pictures are in sequence so it’s kind of hard to visualize the course they are taking. I will say your right styloid looks to be crowding the external carotid branches (maxillary and superficial temporal arteries). The ‘immense anxiety’ you mentioned—is that something relatively new, or part of your persona? I ask because after my car accident part of my constellation of signs and symptoms included emotional changes and difficulty finding words. This went away completely after surgery. Like you, pain wasn’t really a big part of my problem. This isn’t a disease with a set pattern of signs and symptoms because cranial nerves, arteries, veins, and muscles all pass through a tight area that turns, flexes, and slides while swallowing.
The Eagle’s conundrum is this—MOST people with elongated styloids have no problems. NO two Eagle’s patients will present exactly alike. MANY other disease processes can cause the same signs and symptoms. The only way to prove Eagle’s is post operative relief.
If your only complaint is a lump in the back of your throat, can you live with that? If not, a styloidectomy is reasonable. It’s also worth noting what might be a minor car accident or fall that would be insignificant for some could be catastrophic for you. I had some very minor weird little things going on (I could turn my head and my eyelids would flutter. Sometimes my legs felt like they were full of lead) Then came the car accident and things got really bad. My elongated styloid must have caused trauma to a bunch of important things
Hi Julian, I really appreciate your thinking my experience through.
I am anxious by nature so think this is more ‘me’ rather than ES. If anything, I feel more at ease in life these days than I ever have, but then going through this has been, and is, disturbing.
But other than the emotional disturbance of not knowing what was going on inside me, and having to argue my case for getting a ct scan, and the risks associated with ES. I feel OK.
Are you a medical practitioner, you are well versed in Anatomy ?
I think I would like to know more about the risk that my existing situation leaves me in and the options available to me. I hope to get some answers from my next meeting with my ENT surgeon but ultimately I want to be referred to Dr Axon.
Do you know how long it’s likely to have been growing and how quickly it will continue to grow?
My husband and I had to learn the anatomy. We even bought a model of the cervical spine with all the muscles and nerves. There is a big difference between going to a doctor with “My throat feels funny” and “Look how my styloid is long, deviated, and crushing my external carotid”. Doctors are all scientists, most got into this with curious minds. Now they are overwhelmed by case loads and just want to get through the day. Handing you medicine for a swollen throat so they can get on to the next problem is easy. Being confronted by a well informed patient that can identify a clear physiological malfunction and speak their language is how you have to get things done with a rare disease. Also, leave the ‘life is hard now’ stuff for sites like this–going in with a pragmatic approach, plan, images, and solid questions puts us into the ‘rare disease’ category and not the ‘malingerer’ one.
Unfortunately no-one knows how quickly the styloid processes grow, & whether they continue to grow, nor why people suddenly become symptomatic, we don’t have the answer to that one!
I have been to see my ENT and he has referred me to Mr Axon at Cambridge - thank goodness. Not sure of the waiting times but glad to be on the right path.
I wanted to ask others - what issues - if any - you have had with travelling, insurance etc?
I am planning on going to Gran Canaria, which is a 4.5 hour flight from where i am based, in October. I am a anxious flying at the best of times and also have a lot of anxiety around going away - so having this issue is adding to my baseline of anxiety and I just wanted to ask if others have had any problems with travelling or with insurance with this diagnosis?
I also wanted to ask others what sort of exercise they find is non-impactful on their neck/symptoms?
SKC100 -
What GREAT news that you have a referral to Mr Axon! You’ll be in good hands with him. Though I can’t answer about traveling or insurance as I’m in the US, I can answer about exercise & maybe give some insight into your anxiety issue
First, the vegus nerve is often irritated by elongated styloids/calcified ligaments & it plays a role in anxiety levels. You may find that you’re a less anxious person after you have your styloid(s) removed & your irritated nerves have time to heal. Here’s hoping anyway.
Second, as far as exercise goes, you must be the judge. I found that before I had my surgeries intense aerobic workouts sent my blood pressure plummeting & my heart into palpitations (vegus nerve again). I had to be careful not to do anything that caused my neck/shoulders to tense up. The bottom line here is if there are exercises you can do that don’t make your symptoms flare, then do those. If symptoms flare during exercise, avoid those particular movements. Post op, you’ll want to stay away from any upper/lower body exercises that cause you to strain your neck i.e. weight lifting, abdominal crunches, etc., for 2-4 weeks. Most other exercises if done moderately should be fine, but, again, you need to be the judge. Try what you like but evaluate how your body feels during & after & make your decision about what works for you based on that.
When I was first diagnosed, I could still do some swimming, but had to give up aerobics as the movements were too painful for my neck. I then did a lot of cycling, but then got worsening symptoms, they changed & I found that I had vascular ES. The styloids were compressing the jugular veins, so basically it increased the pressure inside my head; blood could get pumped in through the arteries okay, but had trouble going out through the veins… so I couldn’t do any exercise other than walking.
I found that flying definitely made the vascular symptoms a lot worse, because of the increased pressure. But of you haven’t got vascular ES (?), it shouldn’t make any difference to you other than if you’re anxious, you’ll get tense, which could well affect your neck & cause pain. So maybe see if you can have something to ease your anxiety before flying?
I’m not sure about the travel insurance, we used Aviva & paid a bit more- most companies don’t know what ES is, we rang up to get it organised because doing it online there’s no way to specify ES. You have to be so careful with insurance or companies try to wriggle out of paying up if there’s a problem & you’ve not mentioned something! We’d rather pay a bit more to know we’d given them all the right info & be covered for it.
Thanks for your replies - that’s really helpful - I am going to take my time and listen to my body re exercise. I have contacted my insurance company and they said it doesn’t cause any change and I am covered with this addition - so that was good!
I don’t feel anxious day to day - just around specific things - so I don’t think it’s related for me - at the moment. But good to know.
I think I will go see my GP to ask for something to help with flying so as not to exacerbate tension in my neck area.
