Possible ES. First post. Images included

Hi all. My name is Adam, I’m 38 and live in Colorado. This is my first post. Before I get too deep into explaining my story, I want to thank the entire group for providing an immense amount of info. A special to thank Jules for kindly messaging with me, and also SnappleofDiscord, for providing the excellent tutorial for converting the DICOM images (captured during CT scan) into a 3D model to show styloids.

Sorry for such a long post.

In 2005, I Jumped off a large ft cliff on my skis (on purpose). The very edge of the cliff was wind blown and bare rock was visible. The tail of one of the skis caught the edge and threw my balance forward. My forehead hit my groin when landing. Helmet flew off, etc. No broken neck, but a pretty severe case of whip lash and shaking hands for several days. I had my c6/c7 disc replaced last year because of this injury. c5/c6 will likely happen at some point. I have neurological symptoms that I won’t bring up, as I relate them to this injury.

In December of 2016, my right tonsil became sore. In January, what I thought to be a lymph node, popped up behind my jaw and below my ear lobe. After about a month, it hardened and became painless, but never went down and the tonsil pain continued. While feeling around the back of my throat with my finger, I found what seemed to be a small pointy bone sticking into the rear of my right tonsil. I PCP’d it and shortly thereafter ended up at an ENT office. The doctor was unable to feel the pointy bone, and focused heavily on the lump. CT with contrast ordered. Radiologist recommended an FNA on the lump. Nothing came back on the “pointy bone”. Lump Biopsy came back a Warthin’s Tumor. This was an interesting diagnosis, as the lump appeared overnight and simply hardened over time. Additionally, this type of tumor almost never presents itself until the 6th or 7th decade of life.

I had it excised in April 2017 and the ENT was fairly certain the tonsil pain was associated with the tumor. I suspected, what I deemed a swollen node, was caused by the bone sticking into the tonsil. What do I know, though. She also took a swollen lymph node during surgery, which was fishy to me. I only felt one lump.

Fast forward to today. Symptomatically, I wish it was only a sore tonsil still. It’s ironic, I couldn’t have associated some of my symptoms with the original one until reading on this site. Using SnappleofDiscord’s tutorial, I took my CT scan from early 2017 and went to town. Here’s some of the images I saved.


Using another tutorial, I was able to measure both SPs using 3D viewer. One measures 40.4 mm and the other was 39.4 mm (as of a year and a half ago!). I immediately had some resentment. Had my ENT told the radiologist to look for a bone pointing into my tonsil, this may have been discovered. Anyways…:frowning_face: The bone has grown more. I can feel how it’s changed since discovering it. It also looks like the one on the right had broken off near the skull base and has since refused. I can’t tell though. It is obvious they look quite different from one another. One’s bulky, the other is not.

Symptomatically here’s my list:

  • Sore right tonsil

  • Sharp inner ear pain. To alleviate pain, I pull on my ear. The direction I pull depends. This process is painful, but usually works. I feel like something pops or moves back into place when pulling. immediate relief follows.

  • Chronic ear popping. I feel the need to open my eustachian tubes constantly.

  • Heart palpitations. Also random. Feels like I’m going to pass out for about a second. Heart seems to skip a beat, then beats quickly for a few seconds. I wear an apple watch and monitor my heart rate daily, both while I sleep and when awake. Usually 67-70 resting when awake, and 51-54 when asleep. The palpitations happen a few times a week on average. They’ve have been present for a while. Heart checks out good. I can’t say the position of my neck causes this, but I’ll pay more attention. My blood pressure was 110/67 the last time it was checked.

  • Sore bony structure behind tonsil- feels different than the protruding bone in the tonsil. But could be the same I guess? I can feel a ligament or something rolling over this bone. I presume it’s scraping over each time I swallow. Lots of pain here.

  • Lightheadedness occasionally- I can’t say that this occurs when I move a particular way, although I haven’t paid attention much. Will pay closer attention.

  • Very recently, when swallowing, pain radiates from the back of my throat, up through my temple and behind my eye. Makes me want to dig into my temple. Same side as the tonsil/throat pain. This is a come and go symptom. As I write this, I do not have this type of pain. However yesterday and much of the day before, I did. Sometimes I feel this same pain when I’m inhaling a very deep breath.

  • Pain when yawning. The subsequent swallow afterwards is also extremely painful (more so than the typical painful “swallow”)

  • Occasional ringing of the ears. Maybe once a week. Usually lasts for several minutes. but does subside

  • Jaw pain- When pushing lower jaw forward.

  • Occasional sound of tearing/grinding behind my jaw on the right side. It’s seems like somethings caught and breaks loose. It’s loud in my inner ear, but not painful. Sounds like bone on bone or something calcified breaking away. Almost relieving when it occurs.

  • I’m tired more often than ever. I assume I’m just getting older

  • Cruddy mood/baditude. Just ask my wife.

For now. I’m working on meeting Dr. Samji’s requirement for ES diagnosis and treatment. Going to see my PCP next week to share with her my findings and go from there. I’m not going back to my ENT here. Too upset with her. Trying to not channel the bad thoughts, though. I’d like to put that energy towards being properly diagnosed and treated.

If any of you have recommendations. I’m all ears. I’ve read a good amount on here, but I’m just breaking the surface on all of this. I just want to feel somewhat “normal” again.

Thanks in advance,

We’re not doctors, so can’t give you a medical opinion, but just what we’ve learnt through having this ourselves… the styloids do look elongated, & also possibly close to the cervical vertebrae processes, but hard to tell. For any Newbies, the info in the Newbies Guide section does have links to research papers showing that not just the length causes symptoms, but also the angle too. It’s also difficult to accurately measure the length, they can be different measurements in different mediums, & members have often found that theirs have been longer than radiologists measured when they’ve had them removed, but it’s a useful rough guide.
It is possible to fracture the SPs, but they can grow in a jointed way too, so we can’t know for sure if yours was fractures & caused by your injury. But neck trauma is definitely a possible cause of ES, & lots of members have had this.
Certainly your symptoms are all possible ES symptoms, again there’s info in the Newbies Guide section as to possible causes- compression or irritation of different cranial nerves can cause different symptoms, the effects on the vagus nerve are being mentioned more & more by members, so it’s possible this is affecting your heart rate etc.
It’s quite common for symptoms to come & got too, for no obvious reason!
Good luck with getting a referral to Dr Samji & a CT, hopefully you’ll get there… let us know how it goes!

Thanks Jules! I’ve read up in the newbies section pretty extensively. I found your post “ES Information: Common Symptoms And Possible Explanations For Them” very helpful and informative, among others.

It’s funny the length is often misread. I wouldn’t think that should happen. When measuring mine, placing the “Fiducials” (marking points) was difficult. I would get the points where I wanted them for the view I was in, but when I rotated the rendering, they’d be way off. I couldn’t figure how to set the depth for the current view; so I played and played until I had the points positioned correctly. No clue if any of it is accurate, though.

I do understand I can’t get a medical opinion here. I was only intending to share my story thus far, and as well ask for any recommendations before I dive in any further (not medical ones, though comments like “those look long” are welcomed :stuck_out_tongue_winking_eye:). I’m hoping someone from US-Colorado is on here and wants to meet for lunch or can make some recommendations for supporting local docs or something. I swear I read a post on here about a Colorado doc, but I’ve used the search tool and can’t seem to find it, nor are there any from here on the most updated doc list.

I’m thinking of reaching out to Dr. Cognetti in Philidelphia. I have family in PA, so that would be convenient. Reading up on posts about him now.

I’ll keep the group updated as I go. I feel better going into it somewhat knowing something. I have things documented on my end and will be looking into getting an updated CT. Maybe one with contrast and one without (styloid protocol). My PCP has been great about helping me with my odd issues and not just shooting me down. Hoping she can order the needed scans without an intermediary ENT involved. Such bad stories here…Doctor #58:exploding_head: I feel blessed to have found this group before going through all of that, and feel horrible for the ones who have. I know I’m not diagnosed, but after almost two years searching for answers, I feel closer than ever to getting some sort of explanation.

Thanks Jules!!

Hi spinsic,
I was just in CO 2 days ago. Didn’t read my emails consistently though so missed your posts. Love your state!

Either Dr. Samji or Dr. Cognetti are good choices for surgery. A word about Dr. Cognetti - he doesn’t seem to understand that in bilateral cases symptoms can persist beyond the first surgery (because there’s still an elongated styloid/calcified s-h ligament in place causing trouble). He has recommended to some patients that they shouldn’t consider a second surgery to remove the remaining styloid process if they are still symptomatic after surgery #1 which, of course, will leave that person suffering fr ES if they follow his advice. Beyond that - he is an excellent ES surgeon & provides good surgical results.

Since you’ve done a lot of reading on this forum you are hopefully aware that when one has bilateral ES (which you appear to have based on the pics you posted), the remaining styloid often becomes even more symptomatic after the first one is removed, & it’s not until a second styloidectomy is performed that one is more assured of symptom relief. Also, it can take from months up to a year post op for symptoms to subside to the greatest possible degree. The good news is that you’ll most likely feel much better by a couple of months post op.

Glad you found this awesome forum. We are totally here for you!

Thanks Isaiah! If you ever make it back out here, let me know. I love this time of year- leaves changing, good fly fishing, not so hot…

The more I read, the more I’m feeling Samji is the way to go. Hypothetically speaking, the thought of post op recovery in a nice family owned bed sounds great. I just don’t like the sounds of seeing a doctor that may not want to treat both sides in bilateral cases if symptoms persist. I can rough it in a hotel room in California.

I’m going to play some more with my old scan and 3d viewer. I want to focus on my hyoid and SH. I’m reading cases were the hyoid is partially dissected, also because of elongation. I’m wondering if that’s what I feel behind my tonsil. Nonetheless, I’m ready to get my new scan and fix this.

I really appreciate the kindness around here.

I couldn’t see any signs of calcified ligaments on the scan pics you’ve done, it might be worth looking at the original for that as well.

Yeah I tried to find calcified ligaments and I cannot. Really happy about that.

Unfortunately I found something else while sleuthing :face_with_monocle:. Apparently, I fractured my hyoid (presumably during my ski accident). It looks to have re-fused (a small connection at the fracture point).

Google search result for “hyoid bone fracture”:

“The hyoid bone fracture is a very rare fracture of the hyoid bone, accounting for 0.002% of all fractures in humans. It is commonly associated with strangulation and rarely occurs in isolation. The fracture may be associated with gunshot injury, car accidents or induced vomiting.”

Uhm, okay. I knew I had bad whiplash from my ski accident. But strangulation and gun shots is a different ball game for me. Not sure how this may play into my symptoms either.

Also, I did play with a ton of the coronary presets and found that both styloids are awfully close to the carotid, in particular where it forks to form the internal and external branches. Yippie.

I think I’m done 3D Slicer’ing until I get some updated scans done. I was supposed to see my pcp tomorrow but had to cancel for work obligations. Waiting for a call back to re-schedule.

Some hyoid pics showing the old fracture point:
hyoid%201 hyoid%202

Somhow, I missed this post earlier. Interesting thought on the fractured hyoid, spinsic. Another option would be that your hyoid developed that way in the womb. A trained eye could tell you more certainly. Good for you for being so thorough in looking your scans over. Cartotid artery compression can produce some pretty scary symptoms so hopefully you’ll get your ES diagnosis before those styloids get any longer!

Aren’t the elongated styloid bones calcified tendons?

Hi Spinsic, I am a fellow Coloradoan. Not quite diagnosed yet. My dentist discovered the styloid elongation and sent me to my ENT. The ENT supposedly knows all about it. He ordered a CT Scan once he saw my dental xray. Then called back to make sure I was going to make it to my apt once he saw the scan. My apt is on the 25th. Ill let you know how it goes.

No, the styloid process is a bone, it can grow in length itself without having calcified tendons, but a lot of doctors don’t realise this. Sometimes when the styloid process is measured by doctor/ radiologists they measure the process & any calcified tendons too. There’s a lot of ignorance about ES unfortunately!

Just when I think I get it, I don’t. I thought the process was smaller by nature and the elongation was always calcified tendon. Regardless if it is Process Elongation or Calcified Tendon or both and you have symptoms it is ES, correct??? Curious how you can tell from the image it is process and not tendon. So interesting the bone continues to grow; never knew that was possible. I have been analyzing my scans and need to turn them into 3d so it is easier to look at. Ill have to find the directions in the posts. Maybe that is a good thing to place in the newbie section. Wish my apt was tomorrow. This waiting is killing me.

People can have elongated processes- whether just something your were genetically likely to have, like long fingers perhaps, or whether down to some trauma or injury inflaming the area, the causes aren’t always clear. But you can have elongated styloid processes without any calcified ligaments, & equally calcified ligaments causing problems without the styloid being long. Whether the symptoms are caused by elongated styloids or calcified ligaments, it’s still Eagles.
You can’t always tell from the scans where the styloid stops & calcified ligaments start I don’t think, like I said, there’s a lot of ignorance over ES in the medical profession!

Hi Jenawoo! I’m super interested to hear how your appointment goes with the ENT. Seems dentists are the ones often spotting elongated styloids in xrays. Is the Doctor in the Denver Area? Any info you can share with me is MUCH appreciated. Do you have any symptoms?

I’m at a standstill at the moment, waiting to get better insurance coverage. Although, I’m decently covered in CO and would love to know there’s a supporting local doctor aware of ES. One able to diagnose it. Someone I could see here that wouldn’t waste my time.

Converting my CT into a 3D model really helped me understand what’s going on in there. You can find the tutorial here here.

If you have any troubles with 3D Slicer, I’d be happy to help. PM me if you have any questions. I’ve spent a gawd awful amount of time playing with mine.

Fingers are crossed for you!

spinsic, I’ll let you know after my apt if he is our ES guy. He is my normal ENT Dr Mawn. At least he has heard of it and ordered CT scan before he even saw me based on my Dentist xrays. He has admitted they were long too. I am going to attempt the 3d right now

@Spinsic @SnappleofDiscord I am trying to do the 3D and when I choose Volume Rendering nothing seems to happen.

@spinsic @SnappleofDiscord OK I got further but it is not totally merged into one image. It is very disjointed Thoughts?

Hi Jenawoo. Looks like you are pretty close. From this point, you can click the eye visibility boxes to remove the black 2d panes (the ones set in step 5). Also make sure you have the correct volume selected within the rendering menu screen. I had 2 studies on my disc, and it would always select one of them by default, regardless of the previous selection made. Also, I had better results with one of the studies over the other, so be sure to experiment with all of the studies on the disc.

Did you play with the shift slider menu from this point (under the CT-Bones preset)?

If this doesn’t help, I’d be glad to help via a remote desktop session using teamviewer. Just let me know. Also, if you are able to copy the DICOM images to a dropbox share or other service, I can try to mock it up for you on my machine. I’m not sure if they’ll be copy protected or not. I haven’t tried copying mine…

Good luck and let me know how I can help!!

Thanks Spinsic,
I cannot seem to get past my issue and know that I am missing something easy. There is only one study so this is it. I copied my CD to a usb and will try and put them on Drop box. I’ll let you know. Setting up a remote session would be great. What days and times general work for you. BTW my apt tomorrow was canceled tonight due to an emergency surgery. I am hoping to sneak in in the afternoon.

I’ll PM you.