15 mm calcified segment about 16 mm from top of ligament.
Another 3 mm calcified segment closer to the junction of ligament and hyoid.
Hyoid sits 5-7 mm lower on affected side. Rubs ECA.
I show some IJV compression, but do not seem typically symptomatic of that.
Original symptoms and current state:
Dull pain back of jaw: still present
Cheekbone nerve issues and ear sensitivity: still present, but much less now
Sensitive to cold air: still, but less overall
Tenderness around ear: still present, same
Front tooth can get inflamed: present, but less frequent
Neck pain: still present, maybe slightly less
However, now I have some new symptoms, maybe more “classic ES”:
I have the throat burning more frequently. Like chili pepper in throat.
I am also more sensitive to turning head to the left (where calcifications are).
I am also more sensitive to chin tuck or looking down. Some days VERY much so, some days okay-ish.
Palpation can instigate symptoms more quickly (before, it was less likely to).
Change happened abruptly, after a trip to Europe with family. We talked and walked much more, I carried backpack, there was more overall activity. Honestly, that is the only thing I can think of as to why suddenly there are more symptoms.
I will be talking to Dr. Osborne tomorrow. I truly DREAD an operation, but my daily pain (any one or few from above “buffet of pain”) is making me pretty miserable. I want to be able to travel in my retirement and not just hide in a room due to mechanical neck issues.
Thanks for your time, just wanted to give an update – who knows, maybe someone else experienced this type of abrupt change.
@sbincamp - ES symptoms can flare unexpectedly & at random times as you’ve experienced. They can also decline again after a few days, weeks or months. Increase in your activity, especially carrying a backpack for extended periods, could have caused an increase in overall inflammation in your body which in turn has added new symptoms & ramped up old ones.
I’m really glad you have a consult w/ Dr. Osborne tomorrow & hope he is helpful. ES surgery doesn’t usually have a difficult recovery when it’s done by a very experienced surgeon which Dr. O is. The first couple of weeks are usually more uncomfy but after that symptoms usually begin to gradually disappear more obviously. Even though it can take a number of months for some symptoms to go away completely or nearly so, most people feel pretty good by 6-8 weeks after surgery.
It’s worthwhile to consider having ES surgery so you can realize your dream of pain free travel when you retire.
I agree that the back pack could well have caused a flare up, flying can make IJV compression symptoms worse, but it sounds as if you’ve escaped that?
Dr Osborne is very experienced so you’ll be in good hands, I hope that your appointment goes well, life is for living so it’s worth taking the chance of getting better!
He assigned low probability that I had ES, as the calcification was “small.” He said that the lower calcification is something he probably would not even find, so he would not be looking for it.
His take is the surgery likely would not improve my condition. When I asked as to what the alternative possibility is (possibilities are) with my above symptoms, he said he did not know. Whatever I had, according to him, has no name yet.
He was not against the surgery, but he was skeptical it would help and I think he referred to it as exploratory. He did mention that sometimes he finds things which do not show on CT, FWIW.
Regarding my hyoid bone being lower on one side, he dismissed that and mentioned that this could very well be an anatomical variation (e.g., born with it).
So, there you have it. FML . No definitive answer once again. Just daily pain.
@sbincamp - Because the right greater horn of your hyoid is so upturned, I have a hard time believing that your hyoid bone isn’t causing part of your symptoms, & since the segment of calcified stylohyoid ligament is so close to the TP of C1, that it isn’t irritating or causing some irritation or compression to your IJV.
I would get another opinion, perhaps from Dr. Hackman who deals both with ES & hyoid bone problems. He did bilateral styloidectomies on one of our members who had a normal length styloid but significant ES type symptoms a year or more ago. It turned out her styloids had little “barbs” growing off of them that were irritating nerves. Your situation though not the same might be of interest to Dr. Hackman as he seems to better understand that even small amounts of irregular calcification can cause symptoms.
•Dr. Trevor Hackman, UNC Ear, Nose and Throat Oncology Clinic – in the N.C. Cancer Hospital, 101 Manning Drive, Chapel Hill, NC 27514, (984) 974-6484 (Does external or intraoral robotic surgery - removes styloid to skull base & stylohyoid ligament. He’s also a microvascular surgeon).
I’m sorry that he didn’t feel surgery would help you, it’s so difficult to hear that news… I agree that it’s worth still exploring this, so you could do as @Isaiah_40_31 says, or possibly send imaging to Dr Cognetti in PA
Dr David Cognetti, Thomas Jefferson University Hospital, Philadelphia 215- 955- 6760
or Dr Dewan in LA:
Dr. Karuna Dewan, Ochsner LSU Health Shreveport - Academic Medical Center - Specializes in Hyoid Bone Syndrome surgeries
1541 Kings Hwy, Shreveport, Louisiana, 1-318-626-0050 Karuna Dewan, MD | Ochsner LSU Health - she does need a PCP referral though.
Thinking of you…
@sbincamp you could also add Dr. James Liu to the list of possible second-opinion contacts. He is a neurosurgeon and also specializes in facial nerve pain. He has performed styloidectomies, so he may be familiar with multiple aspects of the skull base, vascular/nerve irritation, and facial pain.
I do not have personal experience with him yet, but I do have an upcoming consult.
I had bilateral styloidectomies with Dr. Osborne, and while many of my symptoms improved, not all of them did. I have some similar symptoms that were not fully explained or resolved by styloidectomy alone. In my case, a possible ponticulus posticus has since been identified, although it is still unclear whether that is contributing or whether the issue may be related to fascial banding/soft tissue involvement around C1.
Because of that, I think it may be worth getting a neurosurgical second opinion before pursuing exploratory surgery.
Thank you all for suggesting 2nd opinions. Yes, I’m really not feeling well about this.
I was initially skeptical about having ES due to mostly neurological symptoms and prior tooth extractions and other dental procedures on that side. I only called Dr. Osborne because I finally got one of the more classic symptoms (burning throat or GPN), but that yielded an “likely not ES, I don’t know what else” response.
I will pursue another CT (existing images are 17 months old) and see whether anything has changed. If: a) it has increased, then I will contact Dr. Osborne for a re-eval (a growing calcification will ultimately need to be removed, and I mean the whole chain); b) it did not grow, then I’ll seek 2nd opinions, but with low expectations – I will likely have to figure out a way to manage it non-surgically.
The important thing is that I acquired new symptoms rather abruptly, within the 2-3 weeks of my vacation in Europe. More activity, different water, different food, more talking, backpack carrying, riding public transit (with Maps on phone, so I get off at the right station, LOL), different bed, different pillow. So, this was environmental change rather than structural change that prompted new symptoms. My expectations from Dr. Os should have been lower, lesson learned.
The confusing bits are: 1) my new symptoms are felt moreless where those small calcification are; 2) I can instigate throat scratchy/burning feeling via moving my hyoid alone (it sits low enough on one side to cause back of throat to be scratched). Both of these are not something Dr. Os would address, plus it is really strange to get those particular symptoms all of the sudden (1 is too small, 2 was always there in that position).
@sbincamp - Make sure to request that your hyoid bone is scanned in your next CT session as well as styloids as Hyoid Bone Syndrome produces symptoms similar to ES. It’s also difficult to diagnose & is caused by elongation or strange growth patterns of the greater horns of the hyoid. We’re seeing more of our members who have hyoid irregularities on imaging, but they’re missed because the styloids are the focus.
Thanks! My last CT was head and neck, this time I’ll try and ask the referring doctor to mention two potential issue areas: stylohyoid ligament (full length) and hyoid bone.
I’m sorry if you’ve mentioned before about medication, but have you tried any of the nerve pain meds? As you’ve said about managing this non-surgically if you have to- if you’ve not tried any of the meds it might be worth giving them a go- like Gabapentin, or Amitriptyline, there’s more details in the Newbies Guide Section. We’ve had a few discussions about burning mouth syndrome- does your mouth burn as well, or just your throat? Sometimes the nerve pain meds can help with that, and there have been discussions about Low Dose Naltrexone and how this might help…
ES symptoms are known to ramp up or appear for no known reason, and to go for no obvious reason as well, so it’s not necessarily that anything structural has changed…
Tried all kinds of nerve pain meds. Was on pregabalin (from 75 mg to 300 mg), nortriptyline (30 mg), duloxetine (30 mg), amitriptyline (30 mg), gabapentin (1800 mg)… now am on gabapentin 900 mg. Even tried few chewable carbamazepines, nothing.
None of those work on me. Per AI discussion, they won’t work when the irritation is mechanical in nature. I don’t know, but they do not make a difference.
Did not try naltrexone.
Only my throat is burning and not always fully. Sometimes just a scratch (usually start of day), then worse as the day progresses. Sometimes sharp feeling under the tongue, AI say lingual nerve also getting irritated.
Again, per AI discussion, a nerve may have gotten irritated via too much rubbing against either my calcifications or my hyoid (I could also have HBS). Once irritated and swollen, it now lacks the space to calm down, so it continues to be irritated. AI recommends not doing things that trigger more symptoms, but just regular activity triggers them, or swallowing, or just talking – can’t really and feasibly remove those from my options. I mean, I work full time, pain or no pain. Meetings, talking, planning…
Thanks for all your input, though, Jules. You’re awesome!
I’m sorry that you’ve tried all that and not found anything to help! Definitely sounds like it can’t be avoided, like you say, a bit hard when talking and chewing trigger the pain! It’s rough dealing with all that & work…
I went and looked at an old CBCT with very small (0.2 mm) slices. I was able to isolate just the calcification chain.
Sharing for informational purposes, if someone has this type of setup and is symptomatic, let me know which doctors can operate and remove the WHOLE chain (most surgeons are used to just removing the styloid, which is located at the skull base, but the chain is all along the ligament, even down in the sublingual area).
This data is few years old, but still relevant IMHO…
The entire chain, isolated, with some measurements:
I think Dr Cognetti might do a hyoid bone trim if that’s needed as well as removing styloids…not sure about other doctors, some of the ones who do the hyoid surgery don’t then do styloids…
These images specifically show calcifications on the stylohyoid ligament. Hyoid bone is not shown. This would be styloidectomy, but removing the entire chain (all calcifications).
I believe Dr. Cognetti & Dr. Hackman at the very least will remove all the calcification along the stylohyoid ligament chain. Dr. Samji in California also says he does that or removes the whole stylohyoid ligament when doing a styloidectomy just so the ligament won’t calcify later. We’ve been told 2nd hand (i.e. by members who were told by their doctors) that once the stylohyoid ligament is detached from the styloid, it is reabsorbed by the body; however, it’s unclear whether small bits of calcification are also reabsorbed. I suspect large pieces don’t reabsorb but those are easier to take out when the styloidectomy is done.
I can’t remember if you’ve seen Dr. Chan Leveno in your state, but she is very experienced w/ ES surgeries & might also remove the s-h ligament calcifications along w/ the styloid. That’s a good question to ask any doctor you consult with.
Much obliged. I’m waiting for new CT and then I’ll consult with other doctors. I will also try to get new CBCT from the same doctor that did the original.
Insofar, Dr. Osborne said he would not even look for the smaller chain, which means I cannot use his services. For me, with symptoms predominantly from the smaller chain (but also from the larger segment), I must find a surgeon who will remove the entire set of calcified segments.
I don’t think you need another CBCT scan. No need for additional radiation. The CT you’re waiting for should be all that’s needed to see where the calcification chain is in your neck. Are you getting it w/ contrast or w/o?
W/ contrast and I think this time we’re aiming for 1 mm slices (last one that I’ve shown to this forum was a 2.5 mm slice CT), as well as additional head position (we’ll see).
The CBCT, however, has 0.2 mm slices, allowing much more detailed view of the structure of that smaller chain.
See, in the 2.5 mm slice CT, the lower chain appears smooth, but increase the resolution and you can see the “fish hook” shape of that 3.5 mm calcification. This, to me, is important because a small calcification should not be symptomatic. But, for a jagged one, I can totally see why it is symptomatic.
. No definitive answer once again. Just daily pain.
