I am new here and I was only introduced to the possibility of Eagle’s Syndrome last week. My doctor thought I might have Thoracic outlet syndrome, but after posting my symptoms on the TOS facebook group, many suggested that my symptoms sound like ES. After looking at the symptoms of ES, it does line up very well. I am hoping to get officially diagnosed.
I ended up going to the ER Xmas even due to how severe my JVD symptoms have gotten. They did a CT scan with contrast of my head and neck and I was told that everything ‘looks normal’.
I requested a CD of the scan and ran it through a 3D viewer, and to my untrained eyes, it does look like the styloid process is much longer and is curving inwards. It also seems like my C1 vertebrae is also misaligned and pushing more on the left side, potentially pinching my arteries/veins/nerves as well.
I have had progressive symptoms that started a few years ago.
Early symptoms were:
Feeling like my left tonsil was irritated or something was poking me in the throat
Left arm and neck felt an intense squeezing feeling when I slept on my left side (so I only slept on my right).
Random feelings of feeling flushed or hot.
Pulsatile tinnitus on my left side.
Left Eye Pressure.
Dizziness when standing (at random times).
Fatigue
Now my symptoms have progress into (past six months):
JVD on my left side whenever I lie down, in any position. The JVD is also noticeable on the left side when I bend forward.
Pulsatile tinnitus on my left side whenever I bend forward or lie down in any position.
Intense pressure in the left side of my head whenever I lie down.
Consistent numbness and tingling in my left arm and hand.
Left side of my jaw and my ear also have numbness and tingling. I also have pain in my lower left jaw.
Pulsatile tinnitus & dizziness when standing
Overall balance is getting worse and I feel unstable.
I’m constantly tired and find myself needing to sleep every few hours.
Nausea, especially if I lie down and trigger the JVD symptoms for too long.
Because of the symptoms, I have to sleep with my head and shoulders at a 45 degree or higher incline.
I have a constant low grade headache and pressure on my left side.
I get blurry vision in my left eye (and left eye pressure)
I have seen two ophthalmologists that say my eyes are fine, I’ve also had normal Brain MRI and Heart CT scan. I’ve seen a neurologist that tested my nerves with an EMG test (also normal).
I am having a pretty rough time, and honestly I am not sure where to go from here. My doctor is still on vacation, but I have an appointment with her on January 6th and she is aware of the results of my CT scan and possible Eagle’s Syndrome.
Question: Should I consider first seeing a NUCCA doctor for upper cervical work first? Or an ENT? Both? I feel pretty out of my depth here so any suggestions or thoughts would be really appreciated.
I also included some of the images from my CT scan if anyone wouldn’t mind taking a look as well. Thank you!
(They are of my left side (one of my right) and I also included the ‘skin view’ which shows the veins bulging out).
Hi & welcome!
You’ve done a good job with your images! I agree that your styloids both sides look longer than average, and are certainly pretty thick, which can contribute to symptoms. It doesn’t look like there’s any calcification of the stylo-hyoid ligament, but your hyoid bone processes look fairly long too- sometimes these can interfere with blood vessels and nerves as well. On the left it seems as if there is some compression of the Internal Jugular Vein, the C1 process is against it too- sometimes the IJV is squashed between them, removing the styloid does give space but not always enough so a C1 shave might be needed too. Yours doesn’t look as compressed as alot we see on here though in my non-medical opinion…
You certainly have symptoms of ES & IJV compression, so it’s certainly worth looking into- as it’s more than likely vascular ES, you would be better getting a referral to one of the doctors on our list who is experienced with that. Sadly many doctors are still quite ignorant of ‘classic’ ES, & even more so of vascular ES. It does look as if your C1 is a bit off centre too, like you say. Some members have had chiropractic adjustments for instability, and it can help temporarily, but it would need to be done by someone who understands VES, as they could do more harm than good, it could be potentially dangerous… Ultimately though the only real cure for ES is surgery though…
So here’s a link to the doctors list in case you’ve not seen it yet: Doctor Lists – no discussion - Symptoms and Treatments / Doctor Information - Living with Eagle
I don’t know if you’d be able to get a referral out of state & be able to travel, as the most experienced doctors are a little way away from you?! Dr Nakaji in AZ, Dr Hepworth in CO, and Dr Costantino in NY are the best doctors, also members have seen Dr Hui in Hawaii, hopefully someone will help me out with this because I can’t remember if he’s done more diagnosing & vascular investigations as well as the surgery! Some doctors do telehealth appointments so you could do that rather than an initial visit, & you can look up past discussions about the doctors using the search function. You might be able to get diagnosed by a local ENT, there’s one on the list in WA: Dr Neil Futran UW Medical Center, Seattle 206- 598- 4022 (successful intra-oral surgery) http://www.uwmedicine.org/bios/neal-futran , but the surgery for vascular ES if you consider having that done would be better with someone with more experience.
I hope this helps & that you can get a diagnosis & treatment!
I spend a lot of time looking at the photos, trying to understand what I was seeing - I am glad that they were helpful.
Thank you for also including the list of recommended VES Doctors, as well as an ENT that is local to me. This is perfect because I will bring them up to my primary care doctor when I see her on Monday, so we can get the ball rolling. (I will definitely travel if needed - that’s what I ended up having to do for my MALS surgery in 2023).
My biggest hurdle right now is how to deal with the constant pulsatile tinnitus/pressure/pain, while I wait to get diagnosed and hopefully have surgery. I need to sleep on my right side, but highly elevated to avoid the symptoms, but I still sometimes get woken up by pulsatile tinnitus and then can’t go back to sleep.
If you or anyone has pillow recommendations that has worked for you, I am all ears. I am stacking pillows and its not a great solution.
I am a little nervous about getting an adjustment, as you say it can be dangerous. Just by looking at the images, I can see how it could be bad if the adjustment was off slightly. I will do more research and see what my options are.
Thanks again for your informative response and Happy New Year
Also, I think this might also show some compression as well:
The only way I could sleep was propped up too, I had pulsatile tinnitus but it didn’t keep me awake, nerve pain & head pressure did…I used a wedge pillow with another couple of pillows to soften it as the wedge pillows can be quite firm. I also used a V-shaped / nursing pillow which I found helped as it took the pressure off the sides of my neck. You can get both on Amazon… Plus I was prescribed Amitriptyline for the nerve pain which eased it & helps with sleep too! But I did end up sleeping in a recliner in the run up to surgery as I was feeling pretty rough then. Hope you find a way to get comfy
The other thing that has helped a number of our members who have VES is getting a prescription for a blood thinner. The two we hear about most often are Brillinta & Plavix. A blood thinner can take a few days to a week to start making a difference. In some cases it doesn’t help reduce the head pressure & other related symptoms but in others it’s made a huge difference.
