It’s been quite awhile since I posted … but I was finally able to create these 3-D images from my CT scans and was hoping to get some feedback.
Scheduling my surgery has been a bit of a problem but I think I am getting closer to a setting an actual date.
I am posting the Right, Left and Posterior Views. I haven’t been able to get a great view from the Front yet.
I can physically feel the left styloid protruding under the skin when I reach back into my throat, so that is the one that is supposed to be removed. I don’t think that are particularly long but rather curvy? I hope to share these with my surgeon the next time I see him.
However, the right side is now bothering me — but perhaps it’s just that the ligament may be calcified?
Anyway, BIG thanks in advance for any feedback or comments.
I’ve annotated your scans w/ arrows pointing to what look like the upper & lower boundaries of your styloids & to a potential piece of calcified stylohyoid ligament (R side). I used the posterior 3D image as my guide for marking your right styloid though I can’t tell for sure if it’s as short as it looks from behind. The tiny bit that looks like it’s sticking up out of your C2 vertebra could be an artifact but could also be calcified ligament so I marked it. From the front, the area beneath your R styloid doesn’t look clearly like calcified ligament or styloid.
In summary, your left styloid is definitely long. Your right looks normal length but the presence of a calcified ligament below it could certainly be causing symptoms on that side. We’ve also noted that crossover symptoms do occur so there is a chance that the symptoms you feel on the right are coming from your left styloid.
I do agree the left is long & curved, but not sure about the right; although it doesn’t show on the posterior view, under where Isaiah has done the arrows there looks like there could be more styloid process, tangled up? I’m not good with the techie stuff, so can’t put arrows on the part I mean, but would be worth looking at with a doctor. If it is more styloid, then it would be a similar size to the left, so could explain the right side symptoms. On the left side, the hyoid bone can be seen, & there looks like there could be some calcification coming off that too, so something else to query with your doctor.
Many thanks Isaiah, for taking the time to respond and show me what the heck I am looking at. The slicer is so amazing (now that I am figuring it out)! I am going to take my laptop in for my next appointment with the surgeon. Hopefully, it will be even clearer when I share with him.
This site is such a help to so many people … I am grateful to be one of them.
Thank you Jules. I am seeing that “tangled up” issue too. When I use the sliders to scan through the layers it is still difficult to tell if there is more and perhaps it is curving in an odd way and can’t be seen easily. I am not certain which part is the hyoid bone (I’ll try to Google it and see if I can figure it out). But I do plan on talking about removing any calcification along with the styloid when the surgery is done. I have had frequent pain in both collar bones for quite some time which I believe is related to the ligaments being calcified?
All the best and I am so appreciative of your feedback.
I agree with Jules. That’s actually a little bit like what my right side looks like- extremely short styloid (or, maybe normal length?) with a brief break and then like 3.5 solid cm of calcified ligament (although I can’t tell how far down your calcification goes from that angle).
Also not a doctor, but it also looks like your right styloid/ligament could be pressing on your vein there, which could be causing vascular issues if you have those.
I also have pain just above my collar bone on the right (which is where my ES is worse) and have just been assuming that everything’s so swollen up in my neck that I have a lot of really stiff muscles from trying to “protect” areas where there is pain.
Definitely take these to your doctor! I think the first doctor I got to listen to me about potential ES actually looked at my Slicer screenshots before he looked at my CT. It would’ve been better if he were a competent skull base surgeon, if he were I’d probably have them out by now, but I think getting a diagnosis feels good to some extent even if you do have to wait for further treatment. Best of luck to you, @suzb80!
In the first image, below your jaw bone, there’s a blob sitting by itself with a line coming away from it, almost like a guitar shape. The hyoid has 4 processes coming off it (a greater & lesser cornu, one of each each side), but can’t see all of them on yours, just the one long time…we’re not doctors though, so may be wrong!
Thank you for the input and advice kittchenita.
I agree about the stiff neck muscles. I get “trigger point” injections to help with this. However, the last round hasn’t seemed to have had much impact. Plus, the left side of my face is slightly swollen again … this fortunately seems to come and go in the past year. However, prior to that I had the swelling and weird facial pain that kept me from wearing my glasses!
I hope you are able to get in for treatment sooner than later. It just hangs in the back of your mind all the time doesn’t it?
Best to you too!
I agree, Jules, that the right side is unclear. I wasn’t sure what I was seeing beyond the tip of the styloid so left it unmarked, but it does look like possible calcification - either styloid or s-h ligament.
We have another member, Gwendolyn, who’s having trouble w/ facial swelling as well. It sounds like yours is more intermittent, but when nerves get irritated, they can cause “interesting” responses by our bodies so this could also be a symptom of ES.
I have an appointment with my surgeon tomorrow to go over the 3D images and to tell him that I would prefer external surgery. He was initially inclined to do external until he felt inside my throat and then he decided it would be easier to go internally. After a tonsillectomy and extraction of all 4 fully impacted wisdom teeth in my 30’s, I am extremely reluctant to do anything intraorally. That and more importantly, all the advice on this forum has convinced me to want external surgery.
Any suggestions on discussion points that might help my case? I was going to start with his ability to visualize what’s going on and that I would like the styloid removed to the base of the skull and to have the calcified ligament removed.
I’m getting so nervous.
Some members have had successful intraoral surgery, so I wouldn’t rule it out, but definitely external seems to have a better chance of removing the styloid higher up. So I’d suggest asking him why he feels intraoral would be better, & state your reasons for preferring external. There are some research papers that show the success rates are higher with more styloid removed, here’s a quote from one:
‘Surgical failure rate is around 20% by means of partial relief of symptoms or recurrence of symptoms and can be due to entrapment within fibrous tissue of adjoining nerve, or inadequate shortening leading to constant irritation.’
& this one explains about how the external approach is better.
‘Eagle’s syndrome – A case report and review of the literature by Khandelwal, Hada, Ashutosh Harsh: ‘The most significant advantage of an external approach is enhanced exposure of the styloid process and the adjacent structures, and this outweighs all other considerations. It also facilitates the resection of a partially ossified stylohyoid ligament. Transoral resection causes no outside scars, but involves the risk of deep cervical infection and possible neurovascular injury’. (Chase et al, 1986, Ceylan et al, 2008).
Both these & more info are in the Newbies Guide Section:
So you could print out the research papers & take with you.
If a doctor’s experienced then sometimes it can be good to go with their instinct & skill…but it’s your body & you should decide the treatment you want. If you’re not confident that he’ll remove enough of the styloid, then it might be worth getting another opinion if you can.
I had my pre-surgery appointment today and feel much better after this visit about my surgery plan.
I shared the 3D images and the surgeon said that he would indeed do external approach. Surgery will be in October.
Really weird thing — this is a teaching hospital and the resident that came into to see me before the surgeon, said he had an Eagles patient come in yesterday! I congratulated him on finding it! He acknowledged that during his training everyone said that he would probably never see this syndrome … and he saw two cases on two consecutive days!
Thanks again for support and feedback.
Now to gear myself up for the surgery!
The resident was enthusiastic about his discovery the day before (as well he should be!) and then me coming in the very next day.
My surgeon is on your list — Dr. Rui Fernandes in Jacksonville, FL., My husband and I are very good friends with a retired (and highly skilled) ENT surgeon who was a partner in Dr. Fernandes’ practice before retiring … and it is his opinion that Dr. Fernandes is outstanding in his field.
Additionally, I have had a private conversation with the other person on this site who’s surgery was also done by Dr. Fernandes and she gave him a thumbs up.
Thank you for the good wishes and prayers.
Thank you Jules! I will keep you posted on the date. I am waiting until October because Dr. Fernandes will be able to perform my surgery at a hospital closer to my home. Covid restrictions have kept him in the downtown Jacksonville location only. Also, our son and his wife are visiting before a move to Europe, so I want to enjoy that before my surgery.
Prayers will always be appreciated.