Hi there, I’m new here and so grateful for the formation of this group! I’ve been diagnosed with eagle’s (bilateral though symptoms are all on right side). I have this really achy and swollen area right below where the jawbone angle is, maybe an inch below and maybe a tad to the front. At the same time, that whole right side of my throat starting at the jawline and going all the way down to where the SCM attaches to the collarbone is ‘thicker’ or fleshier or swollen (though not angry swollen). If I palpitate the left side I can feel the ridges and shapes of the esophagus, but on the right, can’t feel any of that in the whole upside down triangle between jawline and SCM-collarbone attachment (all in front of SCM). I’ve had doctors check lymph nodes and I’m told they are not swollen, although I haven’t had imaging done. Does anyone else have something like this? It seems like it’s eagle’s related but don’t want to assume. Thanks!
Hey @Juniper welcome to the forum! I have exactly what you are talking about! Do you have any ear pain in that ear as well?
@Juniper - Vascular TOS is caused by compression of the subclavian vein which becomes the jugular vein in the neck, thus if the jugular vein (more specifically, the internal jugular vein) is compressed higher up in the neck (usually between the styloid process & C1 vertebra but sometimes also by soft tissues along its course), that swelling you feel can occur. We’ve had a few members who’ve had similar swelling in their necks alongside IJV compression.
We know that compression of the carotid artery can cause various types of pain in the heart & neck because arteries have thicker walls & are under high pressure, however, swollen veins don’t seem to cause the same level of pain as they have thinner walls & lack the internal pressure of the arteries. I’m only speculating as to what the swelling is that you’ve noted, but it is possible it’s your IJV as it runs along the course you’ve suggested.
Oh gosh yes. Depending on the day I have inside the ear pain, below the ear pain, behind the ear pain, in front of the ear pain… lol. All the ear pain WITH pulsatile tinnitus and other weird droning sounds (+ a multitude of other symptoms)
Hello, just wanted to comment that I also have this pain. Extends all the way from my ear, down the neck to my collarbone.
Does it feel like swollen soft tissue, or is the SCM muscle enlarged do you think? We’ve had quite a few discussions from members whose SCM muscle is enlarged one side, related to ES…
Thank you so much for your informative response. In fact, I do have Vascular TOS and experience IJV compression related to the extra rib and the tight scalene triangle. So I guess the IJV is compromised at top and bottom in my case, which you’re saying can cause this swelling? My styloid definitely meets the criteria (though not super long) and my CT does show a certain amount of compression between styloid & C1, but I wonder if the upper compression is being affected/compounded by the lower (i.e. enlargement of the IJV between the two spots). I’m trying to determine if getting the styloid removed is the best first step, but with your answer, I’m now wondering if the extra rib is a better first step. My thought was that the styloid keeps growing so that one is inevitable. The TOS I may be able to keep in check with PT, acupuncture, regular balloon venoplasties (I’ve had 7) and the occasional botox treatment (had 1), since it wasn’t a problem until an ‘injury’ about 10 years ago. If anyone knows if one of the eagle’s specialist surgeons (Constantino, Liu, Osborne, etc.) are also familiar with how vascular TOS comes into play, I’d love to know. Thanks!
While my SCM is tight due to the TOS, the swelling is definitely in front of the SCM and is a wide area at the top reaching all the way to about the midline of my throat in front. It narrows as it goes down, following the angle of the SCM on one side and the midline on the other. It doesn’t feel like a swollen muscle. Except for the spot I described (below jaw angle by an inch and slightly forward), it doesn’t hurt, it’s just like a thick pad. I’ve had doctors also check thyroid and it’s not that either.
Same here. The ache I feel in my ear is always that feeling right before you have an ear infection.
When I ran my CT scan through AI, it did note that my muscle on my worst side was noticeably larger. I hadn’t really though much of it, until like a year ago I started watching myself on some zoom meetings I do and realize I tilt my head all the time! It used to help with the pain (not anymore unfortunately), so my guess is that this has something to do with it? Have no clue but the more I read here, the more I learn!
Yes, my suggestion, whether right or wrong, is that perhaps that swelling you’re feeling is your jugular vein. Because it’s compressed up close to your skull base then down at your first rib, it makes sense that the section in the middle would be larger/more swollen than normal. If you’ve had a CT scan w/ contrast, & if that situation exists, it should be obvious via a 3D image.
Dr. Hepworth (Denver) is well versed w/ TOS & IJV compressions as is Dr. Aghayev (Turkey). If you want a reasonably quick answer about the swelling potentially having a vascular relationship, Dr. Aghayev is known to provide video consults fairly soon after contacting him whereas, I recall someone saying Dr. Hepworth is now booking initial consults in October. Dr. Hepworth has suggested that w/ multiple compressions, it’s best to start at the top & work down.
You’ve sure done what you can to prevent surgery for your TOS. I’m glad the modalities you’ve tried have been successful so far!
•Dr. Edward Hepworth, Denver Sinus Care, 3150 E 3rd Ave, Denver, CO 80206 (720) 899-9489, FAX (720) 953-5151, email: info@denversinuscare.com or for initial consults - kcurry@denversinuscare.com
•Dr. Kamran Aghayev - https://kamranaghayev.com
Link to set up a consult: Get Expert Neurosurgeon Consultation & Second Opinion Online
I was just going to post this paper written : Sternocleidomastoid Omohyoid Entrapment of the Internal Jugular Vein Causing Vertigo and Headaches
LINK to paper above: IJV compression caused by entrapment
Ive seen a video symposium with Dr. Cha talking about muscle shaving on the SCM, in addition botox, etc. I wished I had met her 20 years ago. Dr. H office suggested her protocol for my daughter who also has IJV compression @ C1. It makes sense to have IJV compression further down the neck. We both have elements of TOS.
As to lymph nodes, I can tell you that I had nodules in my neck DX 20 years and a vast amount of imaging in those years. No other doc detected them either. I then was told I did have swollen lymph nodes by one doc on CTV in Jan and they were suggestive of possible old lyme, EBV, or other. I then had US of thyroid and other imaging for other issues and those docs made it a point to say I had no swollen lymph nodes. They were wrong!
I had one swollen node compressing IJV, carotid and vagus nerve on one side. The other side was alot…alot of what he described as lymph node garbage. The jugular vein was “decorticated all the way down to the clavicle and up to the jugular foramen.” “There was scar tissue banding and hypertrophy of lymphatics all throughout the left side of the neck and central cord of lateral and posterior to the thyroid”…the jugular vein was still quite tightly constrained by fibrotic bands…thats just the highlights. The doc described that shrink wrapping before my surgery so he could see what others cannot. I swear sometimes I could feel pain from ear all the way down my throat. I have thick SCM too and they are the bain of my existence.
So Interesting, I’m going to check out that article, thanks. What type of imaging finally helped you discover the swollen node compressing IJV etc.? And does Dr. H mean Dr. Hepworth? Was he the one who was able to see the fibrotic bands?
Thank you so much. My recent CT w. 3D reconstruction didn’t raise a ton of red flags with the docs I’ve run it by yet (definitely showing some compression, but mid area doesn’t look overly large, or at least they didn’t flag). Ok if I upload? I’m gathering you’re quite the scan reader in the group 
Feel free to upload any imaging, just remove any personal info… it’s amazing how compressions can be ignored by radiologists unless specifically requested…
Yes it was him. He picked it up on CTV of head and neck…when radiologist and my local ENT said it was all normal? He described it before surgery as something was shrink-wrapped around my jugular on one side and on the other said it was enlarged lymph node near my thyroid. I had an US of thyroid locally and radiologist said I had no enlarged lymph nodes. Go figure. 
This is why I dont give alot of weight to radiologists reads in some cases. They are not doing surgeries day in a nd day out on this stuff. He sees things on scans, others who dont have the same trained eye see.
Another example is that I was having severe pain in my left buttocks about a year after giving birth to a 9.5 lbs baby. I felt like my tail bone was being ripped off when I delivered that one. I spent two years getting scans and injections by orthos and spine surgeons and then told I was “just drug seeking” when they couldn’t figure it out. I then when to UCLA neurosurgeon and had a special scan called a Neurogram. A specialized MRI that reads nerves. The doc could see I had a mass of scar tissue compressing my sciatic nerve re: piriformis syndrome. I cried after hearing that as I was in so much pain. It takes the right doctor and the right scan. Im not good at reading scans except in 3D and not sure I can be of much help looking at yours. Isaiah might be able to compare mine with yours, at least were this shrink wrapping is.
Please do upload your imaging, @Juniper, but as @Jules said, please make sure any personal info is removed or blacked out. Thank you! Jules & others on the forum all help with identifying things we think are significant on the imaging. I’m the one who most often annotates images. 
Hello, welcome to the group. I have exactly the same thing. This is actually my second go around. I was diagnosed in 2019, the surgery on my right side was in June and the left was in Sept. It has returned and I will be having my right side done July 10th.
My first surgeries were definitely a success. I’ve since learned that I actually have another medical condition which has triggered the regrowth.
I’m sorry that you’re having surgery again @Victoria99 ! Who will be doing your surgery? Can I ask what condition you have which has caused the regrowth, do you have calcification issues elsewhere?
Ouchie @Snapple2020 , I had pain in the piriformis muscle for a while after exercising a bit too enthusiastically, it was a pain in the bum! Mine wasn’t too bad, can’t imagine what you went through for 2 years, you are so strong 