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Eagle Syndrome - Online Support Group

Symptoms for 2 decades, suddenly severe, pending diagnosis

Hi there. I’m kind of copying my profile here, but I grew up feeling like occasionally my tongue and left side of my neck would “cramp” upon swallowing if my head was turned or I was lying down. I’m not sure how else to describe it. Reminds me of a cramp in my toes when they just won’t do what they’re supposed to and it HURTS.

Saw different doctors over the years and mentioned it during routine checkups. They said not to turn my head or lie down when swallowing. :woman_shrugging: For years I searched online and only found people with the same problem and no answers. A few years ago I read about ES and was sure I had it but put off discussing with my doc b/c it was intermittent and not a big deal, and I really didn’t want another “well don’t do that if it hurts” talk. Last week it became a big deal. Now it’s every time I swallow. Feels like something is getting stuck or slipping out of place right under my jaw line. Pain radiates from back of tongue, just under my jawline and it’s intense. I feel sore and bruised after it happens. If I turn my head to left and tilt down, my vision starts to go black and I feel like I’m going to pass out. I don’t do this too often b/c why? Haha. But for instance, when I’m waxing my underarms, and I’m working on the left side, things feel precarious. Like if you’ve ever held your breath for too long and your head starts feeling like it can’t brain for much longer. The front of my neck also feels so so tight. I’ve been in tears for much of today between pain, and stress from pain, worry about vascular issues…I took a couple ibuprofen and diazepam and I feel almost good as new right now as long as I don’t turn my head. Swallowing is manageable, to my relief. But I can’t keep taking diazepam and still human so I need a real fix.

Appointment with my PCP next week and hoping to get imaging ordered and talk to him about the specialist I want to see (Dr. Teresa Chan-Leveno at UTSW but I’m still looking in the area and want to get my PCP’s feedback). I’m from CA and have family there so if I can get imaging and a dx, I’m open to and interested in seeing Dr. Samji.

Thank you all for this vast wealth of knowledge. Such a calming resource for me right now. I’ll update after my appointment next week, and symptoms in the meantime if they get worse.

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Oh wow – thanks for letting us know, and please keep us posted!!

Hi & welcome to the site!
Poor you, the symptoms sound grim…it certainly sounds as if it could be vascular ES, the nearly blacking out is a symptom of the arteries being compressed when your head is in a certain position. If you’ve not already read about it, there’s info about it in the Newbies Guide Section. There’s also info about pain relief there- steroid injections can be done into the area, & that might be something which helps you, doesn’t work for everyone though. Baclofen can help too, & nerve pain medications.
A CT is best to show the styloid processes & any calcification of the stylo-hyoid ligaments, so see if your PCP will get that done for you, & if you can request it’s evaluated for ES that’s best. A CT with contrast will show compression of any blood vessels, although if that happens only when your head is in a certain position it may not show anything unless you can get the scan done in that position. Not all doctors are bothered about seeing a CT with contrast though- Dr Samji is one of those, if you’re thinking about seeing him/ having a phone consult, then maybe don’t worry about having one with contrast. He is very experienced, so definitely worth considering a phone consult with him.
Let us know how you get on with your PCP, & hope you’re able to get some help soon…

Tenacious,

Studies show that ES tends to worsen at least in woman once they get into their 50’s & 60’s although there are some as young as 20. It is more rare in men but does happen. I dont think there is any clear data on how long (years) it takes for these calcifications to form but it appears to be an inflammatory process. At some point it reaches a tipping point and becomes intolerable. Mine was 5 years of increasing pain although I think it was developing well before my tipping point. I remember back in 2015 I complained that there felt like a bone in my throat when I swallowed. It was a classic sign of ES and took me 5 years to get diagnosis. You are are the right track. There is alot of info on this sight to help guide and educate you.
I would make sure if you see Dr. Chan to ask how many of these procedures she has done and how often she does them. Dr. Samji has done over 450+ and does them weekly in his practice along with cancer and other ENT issues. He did one side for me about 3 months ago and I will go back for other side in the fall sometime.
You can mail him your CT scan and get a video consult for $300 which is covered by insurance if he accepts that insurance. Once I sent him the disk of CT Scan without contrast, I got an answer within 10 days and phone/video appt set up very quickly (following week).

Hi TenaciousB,

If Dr. Chan Leveno doesn’t diagnose you w/ ES, I recommend getting a second opinion from Dr. Samji. He can diagnose from your CT scan w/o seeing you thus the beauty of a phone/video consult.

Hi TenaciousB, Your symptoms sure do sound suspicious for possible ES with a vascular component. I hope you get answers quickly!

Thank you, all! I’ve been reading other stories here and I’m surprised to see that some other things that I experience, which I thought were totally unrelated, have been mentioned here. I’ve suffered from TMJ symptoms since I was in middle school. Primarily on my right side, so opposite the side where I have ES symptoms. I had something done when I was in my teens, an x-ray with contrast I think, to get a better idea of what was happening with my TMJ. I had to lie on a table with needles in either side of my face and dye running through while they took x-rays. I remember hearing that surgery was the only fix for it but my parents opted to have me wear a night guard. I never really wore it though - they make me gag, so I continue grinding away in my sleep. It never really ocurred to me before, but the swallowing issue started around the same time as the TMJ, when I was in middle school. I’m 38 now.

I also have hypermobility. It’s not something I’ve ever been diagnosed with or discussed with a doctor as I honestly didn’t realize that it’s potentially problematic. I’ve just always been able to lock the knuckle closest to my fingertip (this has actually become annoying with age as sometimes they want to lock on their own), my thumbs can bend to touch my arm, my knees bend back enough that it’s been commented on, but I always thought it was normal, my elbows are the same as my knees, I can place my palms flat on the ground with my knees straight.

I was also born with hip dysplacia and wore a brace for the first 6 months of my life. And I regularly had pulled muscles and strains playing sports over the years. None of this seems related to me but I’m mentioning it because I’ve seen it in other posts and I’m fascinated that there could be a correlation, regardless of causation.

It seems reasonable that possibly hypermobility in joints could cause inflammation from strains, if in the neck area could then cause calcifications around the styloid process/ stylohyoid ligaments…

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Tenacious,
I was told I was hypermobile for years (since early 20’s) and given the diagnosis of fibromyalgia. Only after my daughter was diagnosed with dysautonomia and the other with Regional Pain Syndrome, did we seek out a geneticist and got the diagnosis of Ehlers Danlos Syndrome (EDS) Type III. I am now in my early 60’s and because of the hypermobility, I am bone on bone in many joints and have severe osteoarthritis in several joints and was told I also have it in my jaw many years ago. I was pretty active in sports and exercise but had alot of ligament tears due to the hypermobility that required surgery. SI joint and hip issues are very common in EDS as well as generalized chronic pain.
Here is good website: https://www.ehlers-danlos.com/what-is-eds/

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I ve had several bumps on right side roof of mouth. Can’t swallow well if my head is turned also. Had sore throat and ear aches for months, all low grade and intermittent. Was using Claritin and cough drops and dismissing. Told my PCP and totally dismissed. I asked to see ENT and immediately diagnosed me , even before the CT scan. Skip the PCP and go to ENT. And get CT with contrast.

Just got home from my appointment. I went over the history of my symptoms and wrapped up by explaining that I’ve googled my symptoms and up until a few years ago I could only find other people experiencing the same thing, but since then I’ve found people who’ve been diagnosed and I suspect that’s what’s happening with me. He asked what it was and I told him Eagle Syndrome and I asked if he was familiar with it. He admitted that while he’s heard of it he knows very little about it. From what he does know he doesn’t think that’s it, because he thinks ES causes constant symptoms since the SP doesn’t come and go - it’s there and it would seem that it would cause problems all the time. He also said that if it is ES, he’s not sure that anything can even be done about it.

I didn’t argue - I just listened and asked what he thinks it is. He said he thinks it’s muscle spasms in my neck, and he wants to refer me to a specialist to have a scope done and see what they think. But I think he could see the defeat in my eyes b/c he paused for a minute and then said he can order a CT and then we can decide. I was over the moon and said that I was really hoping for a CT and he said done. :smiley: They called after I left to let me know where the order was sent so I know who to expect a call from.

This was pretty much in line with what I expected to happen - I’m just relieved that I’m getting the CT before going to see a specialist. They’re more expensive, and they take longer to get an appointment, and I don’t want to have to go through a bunch of them to get one who finally agrees to imaging, ykwim? So yay! Thanks for all of the support. I’ll check in when it’s scheduled.

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Pleased that you got the CT ordered, that’s another step forward! I can understand the doctor’s logic saying the symptoms would be constant, but many of us notice variations in pain- sometimes you know why symptoms might ramp up, but other times there’s no obvious reason why they do, or why they improve!
Hope you don’t have to wait too long!

I second what Jules said! ES symptoms do come & go. They are not constant. Sometimes what stirs them up is obvious (I played on a Slip n Slide w/ my niece just prior to my second ES surgery & sliding on my tummy while holding my head up repeatedly brought on horrible symptoms for several days. Sometimes, it seems you’ve nothing out of the ordinary & BAM bad symptoms come on, stay for a few days then subside. It’s a crazy syndrome for sure!

So glad you got the CT order. I’d sure wait on the muscle spasm specialist till you get the CT results.

:woman_shrugging: Any opinions? Doc’s office called and said everything looks normal but since they ordered contrast and the lady at the imaging place said they were looking for muscular/esophageal issues, I don’t think anyone even looked at the SP. And the contrast makes it hard to see. =(

Left side is where I’m having symptoms.

ETA: Playing with the software. Did I get this measurement right? I think that’s the end of the bone at the bottom there, right?



Hard to tell if that is the end where you’ve measured to- it could be. They look a bit longer than average- at average length you wouldn’t be able to see much of the SP. The left one especially is growing at quite an angle though, & research has been done which shows the angle can cause symptoms, so it could well be that for you. Often radiographers don’t comment on the SPs unless specifically asked to look for ES. I don’t know whether it’s possible for it to be reviewed to look for it?

Trying to figure out the 3D Slicer but I’m having trouble accessing the DICOM files. They have it set up to view through an executable and exporting seems challenging. Going to keep working on it. Thanks.

TenaciousB,

I think your pictures look great! I agree w/ Jules. To me, both styloids look a bit long & angled toward your jaw. Can you try to make an image from the front where both styloids are visible? I’ll PM you w/ a copy of mine so you can see what I mean.

I’m going to play with it a bit more this weekend. Fingers crossed for better views. The slicer offers a lot more than the Radiant viewer but it takes a lot longer to get what you want. They’re both awesome though.

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I’ll try to get a better one but this is what I’ve got so far. Thank you again.

Screenshot_3

From this perspective, your styloids definitely look long. The left one, long & thin & pretty angled, & the right one is somewhat long, thick & twisty. No wonder you’re having the symptoms you have!!