Long story short…
I have ES: diagnosed by dentist, oral surgeon, and ent. This includes panoramic xray and a 3D CT that showed elongated bilateral styloid process. Going to attach pictures if I can?
I found an ent/head and neck surgeon I trusted and had surgery on 8/20. My surgery report says the left styloid was removed, I will post pics of that description too (without identifying info). Surgery was intra oral, left tonsil removed. Pathology even states styloid in report.
I never felt better after surgery. I feel worse. While there is less “restriction”, I now feel a worse stabbing pain the back of my throat, but lower near the thyroid.
Now here is where it gets weird. My doctor, at follow up visits, states he can do another surgery on my hyoid. It is almost as if styloid and hyoid are interchangeable words and body parts to him. He said when he removed the part of the horn of my hyoid it was very calcified.
I am so confused. I went in thinking my left Styloid was going to be removed, all reports say it was, BUT then he points to my hyoid now and has called it my hyoid and says I need a second surgery on my hyoid to remove the feeling of a foreign object in my throat. I have a pic of what he removed. It indeed looks like a piece of my hyoid.
Second surgery is scheduled for 11/19 and y’all I’m scared to go under with what is now an external surgery on my hyoid Or styloid Or who knows ?!
I am a Premed student. I know how to advocate for myself. I have asked all the right questions but feel dismissed and so confused. So I requested/had a Ct scan this week. He ordered a neck soft tissue with contrast. It’s not as good as the 3D one my oral surgeon did. But can anyone let me know if their CT looked similar. Anyone with hyoid surgery feel this same pain or get worse ? I can’t identify the styloid in this scan. And I’m
Thinking my hyoid is out of place? I’ve never felt so inept at my own health care. Can you identify where I had surgery ?
I don’t have a radiology report yet. And likely won’t until I go in for surgery. But I did ask for the ent to call before, but he probably won’t. What would you do?
Images to follow
I totally agree that it’s really confusing! It’s a shame the 2nd image isn’t very clear; I can’t see the styloid in it, but then it’s so unclear you can’t be sure, there is something which could be the SP, but not definite…looking at the length of the styloid in your 1st image, I would hope that more would’ve been removed than the little piece shown after your surgery! Which I agree doesn’t look like the end of the styloid process from your image either!
So what to do? Honestly, I wouldn’t want to go in for the surgery with this doctor until I got clear answers, it doesn’t sound as if he knows exactly what he’s doing, interchanging styloid & hyoid- if the ligament is calcified, then it can join the hyoid process/ cornu, as you probably know, but why hasn’t he removed it all? Maybe he’s clipped one end & left it in floating about? Which obviously isn’t good & could still cause pain…
It’s frustrating for you, but I wouldn’t risk having surgery again until you’re sure & would otherwise consider another doctor. Sorry that you’re going through this after having surgery, you’re in my prayers, & hugs to you.
premedmom ~ YIKES! I totally agree w/ Jules. Do not let this surgeon do any more work on you till you fully understand what the bit of bone is that was initially removed. It does not look like the styloid process as that would be long & likely in several pieces. If he removed a section of the lesser horn (cornu) of your hyoid bone but left your styloid, what was he thinking? As Jules mentioned, if your stylohyoid ligament was calcified, a bit of your hyoid bone could have been removed to release & removed the ligament, but again, I’d expect there to be a bigger piece of bone to show post op.
This doctor has no right to be dismissive toward you. It is your body & if he won’t give you answers, you need to seek another opinion.
The scan is really not great. With our modern technology, I don’t understand why every radiology lab can’t produce a nice clear scan of whatever area is being looked at. I’ll send you one of my 3D CT images privately so you can see what yours “should” look like (not the styloids per se but the clarity of the image).
I, too, will pray for you. I’m sure this is a most annoying & frustrating situation.
Thank you so much. The prayers and information are much needed and appreciated. To be honest it’s hard to think straight or make good decisions when I feel that sharp poke in my throat with every single swallow. That desperation makes me want to have surgery tomorrow and Id let me 6 year old do it. The anxiety this all induces is something else!
I do have the Dicom images for the ct scan but couldn’t get the free software to load on my computer. I’m going to try to get my report tomorrow, and I’m thankful for your input and that I could search and find what others reports said. It’s good prep to not be let down, which I have felt a lot of lately !
You can try privately emailing SnappleofDiscord who put instructions for using a 3D slicer program on the forum. He has offered to help anyone who’s having trouble getting it to work. Here’s a link to one of his posts. Just click on his screen name as it appears above the post & it’ll send you to a page where you can send him a PM.
Here’s the report. I was hoping it would mention where the surgery was done exactly.
this is so vague. How can what is poking my throat not be very evident and causing some sort of visual inflammation?
If I called Dr. Samji tomorrow is the consensus that 1. I would need a ct with styloid measurements. And 2. I would be months from surgery?
Your report clearly states you have calcification of your stylohyoid ligaments especially on the left side. That is most likely why you’re still having symptoms.
Your surgeon seemingly did not take care of what is causing your ES symptoms. I’m still not sure what he removed from your hyoid bone or why. When your s-h ligaments are calcified like that, they become “tethered” i.e. they cannot move freely & thus they also prevent the hyoid bone from moving freely as you speak, swallow, breathe, etc. I would imagine w/ extensive elongation on the left (which would extend from hyoid bone to the tip of the styloid process), any time your hyoid bone moves, the calcified ligament puts pressure on the styloid process which could be causing vagus &/or glossopharyngeal nerve irritation, &/or the styloid itself to move a bit w/ the resulting feeling of your being poked in the throat.
You will get a much quicker response if you email Dr. Samji’s medical assistant Lauren (firstname.lastname@example.org) than if you call. He tries to schedule surgery w/in a couple of weeks of your consult if he agrees surgery will help you. He does ES surgeries 2 days/week thus making it a higher priority than some of the other experienced doctors on our list.
Please know that the above information is my speculation of what’s going on in your neck & is not based on medical experience but on my experiences w/ ES. I do hope it gives you some food for thought.
I found my pathology report that does state left styloid removed. Which contradicts this ct scan, right? I feel like I wouldn’t even know at this point how to articulate to Lauren/Dr. samji what surgery I have had done. Surgery reports say styloid, post op conversations say hyoid.
Your most recent scan doesn’t say anything about the lack or presence of a styloid process, only notes that your stylohyoid ligaments are calcified & the left one nearly along it full length. One of its attachments is the tip of the styloid process & as that attachment point was potentially removed, and the calcified ligament was left behind, that calcified ligament would now be a “free agent” moving to whatever extent is possible in your neck (but being controlled somewhat by nerves, fascia, muscle & vascular tissues in the area). It is likely the culprit causing your current pain.
I think your best course of action is to get a second opinion from Dr. Samji based on your current CT scan (he reads the slices not the 3D models). You can have a discussion with him via phone about his opinion of your situation. Prior to that though, you should try to confirm with the previous surgeon exactly what he did & did not remove (I know you’ve tried) & exactly where the bone came from in the photo you have. It does sound like he has used styloid & hyoid interchangeably. That would demonstrate inattentiveness to what he was saying to you in conversation, or sloppiness in using terminology, or worst of all - a lack of anatomical understanding regarding the styloid/hyoid bones which would be a HUGE YIKES!!!
From reading your path report, it says that the specimen is ‘labelled left styloid’- it doesn’t actually state that it is a styloid process, personally I would take that as not necessarily that it is the styloid- the pathology confirms that it’s bone but that’s all.
I had a brainstorm regarding your lab report early this morning which I will preface w/ my ES diagnosis: When I was diagnosed w/ ES, the doctor said he thought I had calcification of the stylohyoid ligament. He did not say I might have an elongated styloid process.
Based on that information, I’m thinking that the radiologist who viewed your current scan & wrote the report is looking at your elongated styloid as calcification of the styloihyoid ligament & not as elongation of the styloid process itself. Thus it could be assumed that your elongated styloid is still there but has simply been referred to in other terms.
I have long speculated that one of the causes of an elongated styloid process is calcification of the stylohyoid ligament starting at its styloid attachment as opposed to calcification starting at the hyoid bone end. We do have forum members that have s-h ligament calcification from hyoid bone up but normal styloid length as the calcification doesn’t extend all the way to the styloid process.
Not to confuse the issue, but it’s also likely the styloid process itself can elongate apart from “help” from the s-h ligament. Thus there are two scenarios for styloid elongation as I see it - 1) calcification of the stylohyoid ligament starting at the tip of the styloid & extending toward/to the hyoid bone attachment or 2) additional calcification/elongation that comes from the styloid body itself.
I hope this insight is gives you more hope & help in understanding a possible scenario in your current situation.
Thank you!!! Thank you so much. That makes a ton of sense. I literally just dictated what you wrote to my ent’s nurse and she’s going to call me back or have him call me. She understands my concern better now and is also speaking with the surgery coordinators… I’m waiting on that call now! Let’s pray it’s before Friday!!!
I will keep y’all posted. I’m unfortunately so miserable I don’t know it I can wait another week or month for surgery. I feel absolutely stuck with this doctor due to the pain and need to GET IT out. I know y’all feel me. I’ve had 4 babies (2 at home), a hysterectomy, colitis, ankylosing spondylitis and acute pancreatitis 8x. And this pain (and the anxiety it induces) feels up there with all those combined… and pancreatitis is the devil. It’s really not tolerable right now. It’s every single swallow. I wish drs understood that.
I’m praying for answers, clarity, and understanding for all involved in my care. And peace for me and my family. I feel like mountains need to be moved but I know He can do it.
Your surgeon will need to remove the “calcified stylohyoid ligament” entirely for you to get the best results. I’m sure you know that but you need to make sure he understands that as well. If he would be willing to read the research paper describing effective ES surgical procedure which we recently received from a forum member, I’ll send it to you. The paper itself is short.