3-D CT Scan w/ Broken Styloid? Thoughts?

Hello everyone! This is only my second post on the forum but I have been reading consistently since putting a name to this wild ride called Eagle’s. In Oct. 2023 I was fine one day and a heap on the floor the next, vomiting, with vertigo, dizziness, and in respiratory and swallowing distress with an EKG all over the place. I had found a lump in my throat and decided it was a gland that needed to be massaged and drained. Bad choice. This initial CT was done in the ER at Kaiser Roseville, CA but no eval for ES was done. 3 weeks later the RAD addendumed the original report upon me begging my PCP to send it back for an ES eval and my ENT said I should get a naturopath and myofascial release specialist. I did and got much worse when my neck was manipulated to release the fascia. I understand why now. I have had 2 consults with ENTs in CA. One was not entirely confident and said to look outside of Kaiser, one was confident but denied vascular ES exists, and now I travel to Dr. Hepworth in CO in March. I need some help to interpret the scan if possible.

I was told the right side was likely broken due to a severe deviation of the angle of the tip of the SP, however my eyes tell me the left side is broken. My symptoms are worse on the right side-if I reach in my throat I can feel a lump the size of a large marble upon palpitating the tonsillar fossa. It feels like there is a bone stuck in my throat at all times (r side) and I have tinnitus in the r ear on and off. The r half of my face feels like its on fire especially behind and under the eye constantly. The r eustachian tube feels full and clogs from time to time. I don’t sleep well at all. Any help is greatly appreciated and I want you all to know I am so thankful for each and every one of you. You have helped me greatly already. I am recently dx with Lyme titers (B. Bergdufori 1.40 and 1.35 after 10 days of Doxycycline) but no antibodies and a past Epstein Barr Virus. I don’t know how these relate or if they are related but ordered the book Connecting the Dots-Palatal Myoclonus, Glossopharyngeal Neuralgia, Eagle Syndrome, Lyme Disease, and Babesia by Sherii Jonas. There is a Kindle version I may figure out to read it sooner with the help of my techie husband. Credit to him for the 3-D rendering in Radiant and thank you to @Isaiah_40_31 and @Jules for the 3-D rendering info. :heart:






Short Video-Both SP

Hi @Heather,

Thank you for the update & the great images (kudos to your husband!!). I don’t see the deviation of the tip of your right styloid. The styloid looks pretty straight to me though it’s like a corkscrew. Part of that appearance may be a result of the 3D rendering. Your IJV on the right also looks good. If there is compression, it’s caused by C-1 but it appears to be minimal. The left styloid is very thick at the top, & it appears it’s not elongated but that your stylohyoid ligament has calcified significantly down its lenghth, just beyond the tip of the styloid. That said, it could be that the longer part of the calcification was originally attached to the styloid, but I’m not sure there’s any way to tell for sure. Hopefully other members will give their opinions. The IJV on the left appears to be compressed by the transverse process of C-1 but not the styloid.

In the 5th image, I believe the thicker white lines that have been measured are slices of the right & left sides of your jaw bone. The styloids are more toward the dark area in the center of the image.

I’d love it if the rotating image could be enlarged so the styloids could be seen better. I couldn’t download it to enlarge it, but maybe your husband can create a larger image?

As you know, I’m not a doctor but now you know what I see when I look at the images. :hugs:

2 Likes

Wow! Thank you for your input @Isaiah_40_31! I had another member point that out about the 2-D image where the bones are erroneously measured as SPs when in fact, those are jaw bones and not SPs. I feel better about that because the measurements were getting awful long and despite what the surgeons I’ve consulted with have said, I’m rooting to be an ES case classified as “vanilla.” :laughing:

I had not considered compression on the left side since most of my symptoms are on the right, but I’ve read enough to know by now that either side can cause symptoms across the board. Thanks for the input on the right. It may well be a cork screw shape since the symptoms on that side are overwhelming.

Will work on your suggestions to get a better view of the styloid bases. I’m just amazed at what we all see. It’s beyond helpful. Thank you again @Isaiah_40_31.
:heart:Heather

2 Likes

I’m not as familiar with vascular compression as some, but looks like (hard to tell as @Isaiah_40_31 said) you may not have (significant ?) vascular compression… If that is the case, your option for doctors opens up with possible sooner treatment. I had one sided surgery with Dr. Trevor Hackman in Chapel Hill NC. He is (I think) the only doctor who does bilateral surgery. Many members have had bilateral with him. It may be geographically too difficult but wanted to throw out that option. He does require an in person initial visit which I felt was important. My virtual consults with Dr. Costantino in NYC were challenging and felt interaction in person would have been helpful.

Regardless, you are on the right track and while this still takes a while, figuring out the problem is a huge part of the journey.

3 Likes

I’m so glad you had surgery with Dr. Hackman. He seems like a wonderful surgeon. I used to live in NC but not anymore and was bummed my timing is just, off. :crazy_face: Or maybe it’s the Eagle’s timing that is off.

I have done some research and have about 4-5 docs in mind who seem to be the most experienced in ES and most trustworthy. I thought I had two docs picked out but a few members have brought up the fact that these two left pieces, sometimes significantly long pieces, of the SP behind because they lacked the skill to remove the offending bits for fear of injuring surrounding structures. I understand this limitation and think it’s honorable not to chase if the training and experience are not there. We all have our limits. But for many, they are still experiencing symptoms and were never told the truth post-op that the surgeon couldn’t remove all the pieces. This has resulted in a couple of folks seeking out revision surgeries and a lack of trust within the ES surgical community for them and myself in my neck of the woods.

I read somewhere on here that everyone is so educated in ES because we have to be and become even more educated than most of the docs out there. Wild.

I’m fairly sure I have a vascular impingement somewhere because my symptoms of feeling like I’m having a stroke or passing out have ramped up lately. They were intermittent in the fall or would come, stay for a few days, then resolve for a week or two, but now it’s 1-2 times daily. I mostly feel like I am going to faint and it’s tough to get out of. I can deep breathe and sit down on the floor but it’s just intense. I haven’t lost consciousness yet, thank goodness.

Thank you for your reply @Leah. I’m thankful to be in good company and appreciate your help!

1 Like

Also thank you for your take on the vascular portion. I hope I don’t have significant vascular issues too! :pray:t2:

1 Like

I agree with @Isaiah_40_31 ‘s assessment of your scans. If you’re getting stroke-like symptoms that could be down to a carotid artery being compressed, which isn’t shown on your CT…some of your symptoms could be vagus irritation too. So it might be very helpful to see Dr Hepworth in March, you’re ‘lucky’ to get in to see him (not lucky of course because you’re feeling so rubbish, but good you’ve been able to get an appt with him!).
I hope that Sherri Jonas’ book is useful too!

3 Likes

Thank you so much @Jules! I am very lucky to get in to see Dr. Hepworth in March. Another member told me he is booking out surgery another 4-5 months so I am trying to hold on. Have you read that book? I’m excited to see what it says. I’ve felt like when it rains, it pours with my health the past few months but trying to remain positive. I take solace in the fact that there is a fix for this and so one day at a time. Thank you for your input @Jules! I so appreciate it!

2 Likes

I’ve not read her book, but remember her from the forum when her son had ES. Definitely a tough journey for you, but progress is being made :hugs:

2 Likes

Wow! That is fantastic to hear a bit of her backstory. Thank you @Jules! I look forward to reading her book. :heart:

2 Likes

I’ve read her book. It’s a pretty quick read & shows what a mother is willing to go through to help a seriously ill child get a proper diagnosis & treatment. Honestly, I think it’s amazing the family stayed together after all they went through. That also shows a lot of marital & parenting commitment. It was a rough ride for a few years for them.

2 Likes

Hey, that’s the stuff we’re made of @Isaiah_40_31 so I look forward to reading it extra now! Thank you so much. My husband can make it bigger but said it would be 60 mb and not fit on the forum. He will try to file host it instead and I’ll post the link.

2 Likes

Thank you @Heather!! I look forward to seeing the larger image so I can get a better look at the left styloid & s-h ligament. :hugs:

1 Like

@Isaiah_40_31 Here are some links to the file hosting my husband set up. These are safe links.

To download use the “free” 1 MB speed and find them in your browser’s download section. It is best to view with a VLC player.

Upload files for free - Short Video-Both SPs.mp4 - ufile.io
Upload files for free - Close Up Broken SP.mp4 - ufile.io

@Heather, Please tell your husband thank you! Your left styloid also looks corkscrew shaped (again that may be a function of the 3D conversion) & looks very much like the image that @LimeZest posted of his left styloid today (Can anybody help me to confirm if my CT shows elongated styloids? - #49 by LimeZest). It’s hard to know whether the styloid broke & the piece separated off or if the stylohyoid ligament itself is calcified apart from the styloid process. Regardless, since you have symptoms, it should be removed. The good news is the surgery on the left side may not be as difficult as the one on the right since the calcification is further away from your skull base.
Here is an image of your left styloid so others can see it more clearly:

2 Likes

Dear Heather, thx for sharing your experience with ES. i think i read for the first time a very similar beginning of ES. i got up for work from bed and fell right back in. first thought was “am i drunk?” the whole room/walls were turning around me. i was alone so i called my next door neighbour and crawled to the door, could not stand. in emergency i was told i had a migraine and given an IV and sent home. took me a week in bed and then a month of someone else driving me to work. lots of balance exercises for a feeling like walking on a boat and i learnt to live with it for 20 years when my symptoms got worse, i had CT with contrast and it showed 5.5 cm styloids. long story short i am so thankful to read your post. all the best to you and let’s win this.

3 Likes

@Bozena Your post nearly made me CRY and only didn’t because crying makes this all hurt so much worse. :crazy_face: It’s so good to know we truly aren’t alone. I had an ENT appointment again today to debride my ear that’s had a recurrent candida infection and the older male nurse practitioner said he’d read about Eagle’s Syndrome a long time ago in school but I was the first person he’d ever met with the syndrome. This is Dignity Health in California. When I had Kaiser Permanente in 2023 the only surgeon for them on the west coast told me they get 15 patients a year for surgery. Very rare. How can this be? Well, it just is. Thank you for being Eagle strong with me and for taking time out of your day to post. I know many others will read your post and it will help because you’re honest, heartfelt, and just a love. You’re amazing. Thank you again and feel free to post on my posts anytime! :sob::heart::heart::heart::smiley:

2 Likes

i emailed you Heather

1 Like

i just got a notification that the email didn’t work so just in case here is my answer to you:
Hi Heather, thank you for your sweet, sweet reply. I read that 4% of the population has ES and 4% out of this 4% shows symptoms. I realize how rare it is and don’t blame dr for not knowing but breaks my heart that you are facing them with pain and they don’t want to look into it. no interest. They will tell you all is good with you and not investigate more. Or they will say I don’t think this is ES and they don’t see the obvious question coming to mind if it is not ES so what is it. you know all that no point. All the best to you Heather. Bozena

4 Likes

@Bozena - Going forward, you can send @Heather a private message by clicking on her screen name as it appears above one of her posts.

I agree with everything you wrote. It just doesn’t seem medically ethical for a doctor to dismiss a patient who’s in screaming pain just because that doctor doesn’t know off the top of his/her head what’s causing it.

3 Likes