Hi there I have had terrible neck pain for years with multiple muscle spasms - Scalene, scm, Di gastric…suboccipitals & my hyoid feels tight - especially when I try to sleep.
I recently had a ct and left styloid process is 4.6cm markedly compressing the jugular while the right is 4.1 & only touching jugular.
Upon reading about Eagle it certainly seemed to me that it aligns with many of my symptoms. I just saw an ENT who said the styloids have to extend longer to reach the hyoid to be eagles syndrome & that it doesn’t matter the jugular is compressed as my right is ok.
His opinion doesn’t seem to reconcile to what I’ve read…does anyone have some advice? I’m in Australia so I realise knowledge here is very little…thanks!
I’m sorry you were fobbed off like that, the doctor was talking rubbish! The definition of Eagles Syndrome is elongated styloid processes and / or calcified stylohyoid ligaments which cause symptoms. So clearly you have Eagles syndrome! The ‘average’ length of styloids is about 2.5 cms , so yours are elongated. There is sadly so much ignorance with ES still, even though there are many published research papers and seminars now, and info easily available online… Some people can manage perfectly well with only one Internal Jugular Vein, but not everyone does. The body can compensate, veins in the back of the head can swell and take some of the blood flow (these are called collateral veins), but these can themselves cause symptoms, think varicose veins in the back of your neck and around the base of the skull! Skilled doctors look for these on imaging, and other signs that the pressure inside the head is high, as well as taking symptoms into account…
There’s info about common symptoms & possible causes you can have a look at if you haven’t already, and also there’s info and tips about some things that can help with the symptoms of IJV compression in the treatments section, here’s a link: Latest Welcome/Newbies Guide to Eagle Syndrome topics - Living with Eagle
If you can, you could get a referral to Prof Elliott and Dr Rao, unfortunately they’re the only doctors that we know of who do treat Vascular ES:
A/Prof Michael Elliott, ENT, Unit 211/300 Pacific Hwy, Crows Nest NSW 2065.
ph# +61 2 8355 7940 [Operates at Royal Prince Alfred Hospital/ or Concord/ or privately at The Mater(?) with Dr Michael Halmagyi or Dr. Rao (Neurolosurgeons) and Dr Jeff Parker (Radiologist)]
•Dr. Prashanth Rao https://www.brainandspinesurgery.com.au (operated w/ Prof. Michael Elliott on one member who needed a C-1 shave for IJV decompression)
Thankyou so much for the reply, it is most informative.
I was surprised at his answer….especially since I’ve done considerable reading on this forum since my Ct & never found information stating the styloid processes need to meet the hyoid to constitute a diagnosis.
I actually do have an appt with Dr Elliot scheduled in 2 months! I made the local ENT appt in the interim as I was worried about waiting that long & my physio is concerned about treating me anymore with the jugular compressed.
I actually reviewed the contrast scans it looks shut off in the axial view…and I do feel so groggy some days that I wonder if it has something to do with it.
The collateral veins are interesting - I have a lot of base of skull pain at the rear I wonder if that ties into it? Although my main pain is behind my ears and down each side of my upper neck with lots of muscle spasm in that area as well as my hyoid & digastric muscles - some days it feels like I’m stuck looking at the sky and have trouble trying to look down.
Interesting the c1 shave as my c1 is slightly rotated to the right so the left c1 transverse process compresses the jugular against the styloid process.
It is a shame there are so few experts within Australia on this issue - hopefully I can get some good guidance from Dr Elliott - it is interstate for me so will only be Telehealth for this appt but I’ll travel there if he believes he can help. At this point I’d just about try anything to have even 1/2 my old life back so if an interstate operation is what it takes then that’s what I’ll do!