Hi everyone!
Just want to introduce myself and my story and see if anyone experiences similar things.
This week I was finally given a concrete diagnosis of something after years of suffering, confirmed Eagles Syndrome with 100% IJV compression on my left side and 70% IJV compression on my right side.
The neurosurgeon I see is bringing it to his board other surgeons he works with to discuss treatment but has said he will likely remove the styloid on my right side and shave C1.
My symptoms all started suddenly at the same time,
head pressure/heaviness when upright and unsupported (using a headrest or reclining improves)
Constant neck pain especially at base of skull
tmj (preexisting but got 10x worse)
occasional pulsative tinnitus
lump in my throat, difficulty swallowing
Feeling of being strangled
pressure in the right side of my throat
Originally for years I thought it was cervical instability and after medical gaslighting by so many medical professionals I went to the top CCI surgeon in my country who did all the imaging and found no instability, only thing he saw was an abnormal grabb oakes measurement but wasnāt concerned by that.
He then said he wanted to check the possibility of IJV compression, so first was the MRI Venogram. Confirmed compression, then a CT venogram confirmed the cause and got the eagles diagnosis.
Neurology says I have Cervical Dystonia and thats why my head feels heavy and pressured, surgeon things itās more likely the eagles is causing this (still a bit hesitant on it because I havenāt heard of too many people with eagles experiencing upright heaviness/pressure that goes away when your head is supported or lying down) but I have faith in him, hes done all the right scans and ruled out CCI.
Waiting now to hear what the surgery plan is, will likely have to wait until the start of next year for surgery because of insurance waiting times and to save up the fairly large out of pocket payment I expect (Iām in Australia and health insurance isnāt the best here unless its a ānormalā procedure, so expecting to pay around 15k out of pocket.
Mainly wondering does anyone experience similar symptoms to me, especially the pressure and heaviness and/or has anyone had surgery and have this improve?
Hi Benwt, & welcome!
Iāve just sent you a pm with info about the site, you posted this quick & beat me to it!
Thereās info in the Newbies Guide Section about common symptoms & possible explanations, Vascular ES symptoms are covered in there tooā¦Great that you have been tested & that IJV compression is confirmed, it does sound pretty severe, so it wouldnāt be surprising if you have increased head pressure. Usually though the head pressure eases when being more upright, laying flat makes it worse. Dizziness, vertigo, head and ear pressure, feeling like your ears are blocked, off-balance feeling, tiredness, brain fog & pulsatile tinnitus are all common with IJC compression, along with weird symptoms like feeling sucking in your head, like youāre wearing a hat, feeling like youāre falling when youāre not & feeling closer to the ground than you are - can you relate to any of those? I couldnāt sleep laying flat so had a wedge pillow to keep propped up in bed & closer to surgery had to sleep in a recliner chair. The heavy head feeling does sound more like CCI, there have been a few discussions about this, I donāt know much about the Grabb Oakes measurements, others may know more about that.
My styloids were causing bilateral IJV compression, but with no C1 involvement, when I had the worst side done it improved the vascular symptoms alot. I had the second side done a year later & things improved even more, so there is hope!
Iām sorry that youāre having to pay for the surgery; unfortunately that is more & more common; Iām in the UK & the surgery is hard to get free here, & waiting times are ridiculous, Canada is the same!
All of those resonate with me earpressure/off balance/brain fog/sucking in my head.
For me Iām much better lying flat, most symptoms will go away except for the just general neck pain. The explanation I was given for the heavy head was a few things, a lot of the time its more of a pressure feeling than a heavy head but my surgeon said with Eagles syndrome itās so new and theya re constantly learning new things about it so its possible that some how my posture when upright worsens the compression and leads to a build up of fluid when upright, then supporting my head or lying down is improving the posture and allowing things to move more freely, then the idea was proposed that I dont actually have cervical dystonia but my eagles is cause guarding and muscle tension and this is leading more to the pressure.
While it is my main symptom and is kind of the opposite of what a general person with IJV compression and eagles would experience Iām hopeful that it is the case for me that I am just presenting a abnormally, especially with CCI being ruled out along with any instability anywhere in my neck.
Waiting to hear about my surgical plan once they discuss with the ENT and Iāll go from there I guess!
If I remember right, we had a discussion on here about IJVs being more open when laying flat, but that they collapse when uprightā¦usually being upright helps to drain the pressure with gravity when the veins are compressed, but the veins being more open laying flat could explain what youāve experienced?
That seems like it would explain it alright and sounds vaguely like what the surgeon said to me. Logically you would think that the pressure would drain better when upright but I guess if I compress more when upright they arent going to drain very well
Many of our members have lost the natural lordotic curve in their cervical spines which causes straightening of the cervical spine (military neck or forward head posture). That in turn can bring the styloids into closer contact with nerves & vascular tissues in the neck when a person is upright.
Your symptoms worsening when youāre upright suggests to me that you may have a straight or even reverse lordotic curve which exacerbates your symptoms when upright. If you have 3D images of your CT scan & are willing to post a few that show your styloids, IJV & cervical spine, we can let you know if we see that problem or you can look for it yourself. The good news is the neck curve can be restored by doing simple, gentle exercises.
I donāt have my images in a 3d rendering but I do have a loss of cervical lordosis. Iāve read a bit of medical literature talking about examples of patients who experience compression in an upright posture so Iām assuming thatās whatās happening to me.
You can convert your CT images to 3D using radiantviewer.com for PCs or Bee Dicom Viewer app for Macs. Another tool is to upload your images to dicomlibrary.com. That site anonymizes your images & converts them to 3D the. Sends you a link you can share if you choose to. You will need to use the menu at the top of the dicom library images to pull out the specific images you want.
Yeah I donāt have the Dicom files for the images on the pngs, I know I can convert them but Iām not too pushed. Already been given a diagnosis so seeing these images isnāt going to do much else for me
Makes sense. Iām glad youāre satisfied with having a diagnosis. I wanted to know what the doctors saw in my neck so was glad 3D images were included in my CT scan.
Yes I am satisfied but a little hesitant on the upright heaviness symptom rather than lying down but I have found a few people across forums that presented this was so thatās bringing a bit of a reassurance. I suppose with all the anatomy in the area itās likely everyone could be different
Interesting @Jules - when Iāve mentioned feeling like Iām wearing a hat that is too tight and this feeling like Iām getting nearer to the ground whilst walk, drs roll their eye and look at me like Iām mad. Iām seeing neurosurgeon 2 June to find out scan results and way forward. Lost all faith in local Trust who actively pay GPs not to refer patients! Saw locum who gave me Butec patch, by day 6, breathing badly affected and out of it so took the thing off.
Hello, @Benwt ! I have most of your symptoms (better reclined or flat), as well as lightheadedness/vertigo, a sickening pressure sensation where my neck meets my skull and neck/scapula/shoulder pain, I was extensively evaluated for spinal csf leak before I discovered my vascular ES on my own. No leak found. Two things that may help (and I actually got both of these things confirmed in Chat GPT): 1. Dr. Hepworth told me IJV compression can absolutely cause better-flat headaches because the IJVs open up when you are reclined or flat. It all depends on the way the compression is happening, which is unique to every individual. 2. Something I learned in the FB Jugular Venous Outflow group yesterday! The IJV compressions can also cause inflammation/backup of the Epidural Venous Plexus (all in the base of skull/neck). A girl mentioned it yesterday and showed photos of it on her MRIs, so I went and looked at mine, and lo and beholdā¦ very similar to hers. Interesting! Have you heard of that in here, @Isaiah_40_31 ??
Here is a photo of the area where the epidural venous plexus is, and here is a photo where mine are inflamed, which can fluctuate based upon position and exertion. None of this has been noted on any of my imaging, so of course, just like vES, I found it myself yesterday after the girl posted about it on FB.
Thank you for this great information. It is new info for me, @Ladymaestro1. Makes sense though. Itās another testimony as to the complexity of the human body.
Itāll make good discussion material when you next see or chat with Dr. Hepworth. Iād like to know what he says.
Interesting that it doesnāt come up in conversation between the doctors who have vascular compression experience & their patients as I can see how it explains severe skull base pain.
Iāll pass this along to a couple of people I know who are dealing with that.
I said āinflamedā, but Chat GPT says itās more like āengorgedā. Blood poolingā¦ which can happen in both venous congestion/IIH and csf leak.SIH situations, as well as CCI, TOS and abdominal compression situations. Sighā¦
@Ladymaestro1 - Iām so sorry youāre in so much pain. Was there any discussion about the āinflamedā situation resolving once the IJVs are decompressed? It seems that would be the case.
Thank you! I have not yet had that discussion with Dr. H because I just found out engorged EDP was a thing yesterday. It really does explain a lot of my odd skull base and neck pains/neuralgias/icky sensations, although we wonāt know if the compressed left IJV is the culprit until that surgery with Dr. H in August. I may send him a portal message to check out that area in all the MRIs of mine that he has on file. But, from what I gather, he does not really monitor his messages. His staff/NPs seem to be the ones that do that. Iāll also try asking Chat GPT about resolution of the engorgement tomorrow. That girl who told me about it had styloidectomy/decompression in Feb and said she had a very recently suddenly good resolution of some symptoms. I believe her carotid and some scar tissue was also involved though. She said it was a total mess in there and it freaked out the ENT, lol. I donāt know if sheās in this forum or not. If she is, she could give more details.
Thatās interesting info , thanks for that, Iād not heard of it eitherā¦ we had presumed from what others have experienced that the base of skull pain with IJV compression could be caused by collateral veins getting engorged, but didnāt know it could be seen on an MRI.
Was there any discussion about the āinflamedā situation resolving once the IJVs are decompressed? It seems that would be the case.