I got my ct results. 3.1 on the right, 3.4 on the left. Radiologist said they were elongated, suggested Eagles Syndrome. The report also mentioned “Fecal Syndrome”. I don’t think that’s a thing and if it is, it’s probably not diagnosed on a neck ct! Typo? Anyways, we’ll see what my ent has to say about this. I was hoping for some crazy long styloids that couldn’t be argued with. Hopefully this information leads me in a productive direction.
Is that a little ligament calcification near the hyoid?
Hey Ladybug,
Well, I can assure you, it is a thing BUT I also have to agree, I doubt a neck CT would diagnose it.
In fact it’s a bowel condition.
Merl from the Modsupport Team
Wow! They may not be hugely elongated but they look very thick! They measure the same as mine via CT but please keep in mind (as I was also advised) that a CT takes image “slices” so they will likely measure longer. My longer side was estimated at 3.5cm but measured post op at 4cm.
Sometimes we have to laugh a bit at the reports. Mine also had a typo in it suggesting a “thyroidectomy” instead of a STYLOIDectomy! I did get it corrected so that any future specialists who might see it didn’t get confused or to prevent a wrongful surgery
I’m not as experienced as many here but I do say you have plenty to support your diagnosis!
Best to you! I believe the healing journey is on its way!
Those are some thick styloids!
Do you by any chance have any vascular ES symptoms? Looks like at least one of your styloids is causing compression of your IJV at your C1 level.
I have headaches and fatigue. These symptoms could be from a million things though, so I’m not certain if they are vascular symptoms.
They are very thick & wonky looking! The hyoid bone has 2 processes each side, the greater horn & lesser horn, it looks to me that there is a piece of calcified ligament on the right side as you said. There could perhaps be a bit of compression as @elijah says…
I know we’ve had some members with intestinal issues potentially from Vagus nerve irritation, but the Fecal Syndrome’s a new one to spot on a neck CT :joy
My ent sent a mychart message in response to the ct results, saying that he still didn’t think my symptoms (globus, throat burn, throat tightness, difficulty swallowing) were related to Eagles but is willing to consider the possibility. I have a phone appointment with him next week to discuss further. I just want to make sure I’m not missing something, another diagnosis that needs looking into, maybe. Meanwhile, I’m getting together my documentation to send to Dr. Samji for a consultation.
How are you feeling, @Tjmhawk01?
I’ll add, not only are they thick & wonky looking but also quite curved. I also agree w/ Jules abt the ligament calcification.
Not all ppl w/ IJV compression get horrible symptoms but w/ the way your styloids are shaped, I would expect getting them removed would take pressure off the IJVs which might end your headaches.
Sending your info to Dr. Samji is a smart move!!
@Ladybug which side do you feel most of the symptoms? The way your styloid are angled they could be messing around with some cranial nerves that produce Classic Eagle symptoms which the symptoms you listed below fall under. We are also learning that Hyoid bone can produce throat/swallowing issues so you might want to look at the Hyoid level as well to rule out if it is to blame (though highly unlikely in your case). Is this CTV, I see Jugular Veins more prominently than Arteries so seems to be taken in Venous Phase. More images of the front would also be helpful.
Here are nerves (highlighted in yellow that could be impacted by the Styloid)
Source : https://emergeortho.com/wp-content/uploads/2018/04/1-s2.0-S2468781220301399-main-2.pdf
It was also posted here in the research area by Andrea who I believe co-wrote this study.
All my GI issues began only after my IIH symptoms started presumably due to my bilateral IJVS compression. I actually just did a massive stool sample and blood work to see if there’s anything else going on and literally nothing came back. I didn’t even know how many stool tests there are to check for intestinal inflammation, but I did them all and they all came back negative.
All my Drs are hoping my GI issues are related to vagus nerve compression and that my upcoming surgery will help. At the very least, it’ll save me a colonoscopy
@elijah regarding GI issues. There was study posted by @Dontgiveup where gastroparesis resolved after Styloidectomy. You might be interested in it.
Thankfully my GI aren’t that severe and wow, bilateral c1 transverse process resection, and it looks like they took the entire process, not just a shave. That’s extremely intense.
@elijah Resection basically means they shaved down to the Vertebral artery. They did not take the whole thing.
Before surgery
After Surgery of both the Styloid & C1 shaving (I just high-lighted yellow to show how much of the bone is removed)
Correct, that’s what I meant. Still seems they took a lot. Usually I see they shave just a small channel and I think this is the first images I’ve seen of a bilateral c1 resection.
@Ladybug, thank you for asking. I’m a day short of 3 weeks post op. I feel ok given I’m just on auto pilot with recovery. The incision is healing great and the numbness in my face is decreasing. It’s nice when you can feel even just an ever-so-faint sensation of touch! I’m still taking 600mg Gabapentin 2x daily because I still have consistent throat/tongue burning. But, the burning isn’t as angry as pre-op either- yet just plenty to be uncomfortable and remind me it’s still there. The Gaba did nothing pre-op so the jury is out whether its helping now or not. It still seems to increase in intensity as the day goes on, similarly, the inflamed feeling in my neck/ear. I keep reminding myself of all the reasons to remain patient and optimistic that this continues to improve.
I’m so glad to hear how you are doing I haven’t had an opportunity to check in Im sorry! I’m glad to hear you are doing okay and remaining patient! You’re doing great and I’m so happy for that!
You’re the greatest cheerleader! Rest assured, I’ve got you when your turn gets here
Still praying for you