I’ll try and be brief because I feel I could write an essay on how my life changed approx two years ago, since then i’ve had two years of absolute hell and I’m still going through it.
Terrible Neck pain gets worse and better
Throat pain
Trouble swallowing and speaking at times
Head noise 24/7 unbearable
Some visual disturbances
Head pressure that gets unbearable at times
Warm face at times
And probably more usual scary symptoms I’ve not remembered to list
Has MRI and CT scan and doctors have found no significant reason for any of it. I’m feeling very unwell and can’t do alot these days due to my symptoms being so bad.
My symptoms just get worse and now doctors are telling me it’s my anxiety because they cant find anything and they aren’t looking or helping me anymore. I have a young child and I really need to get some answers and help so I can be better for him.
Recently they found a distended vein on right side of neck this is where most of my issues are on the right side and I’ve stumbled across Jugular vein compression and then eagle syndrome which can cause this and it really sounds like something I might have and possibly something the doctors have missed.
I guess I’m after any advice or options I can get at this stage as I feel very desperate.
Welcome to the forum. So very sorry for your suffering, if you have read other stories on here, you’ll see a lot of similarities. A lot of suffering, misdiagnosis, general lack of health ‘care’
Did you get a copy of your scans? And do you have any pictures you could upload. It is quite common for this to be missed. In fact, it’s almost always the case. Specifically with radiologists.
If you do have the CD of your scans, You can download radiant viewer software, it is free, and you can upload the scans to that and see in 3-D what things look like. When I get a chance, I’ll link you to some of those notes on it.
One of the things to look for when you upload your scans is your C1 vertebrae to see how close it might be to your styloid if you have an elongated styloid. If the CT was not done with contrast, we will not be able to see veins. But we can measure the space and get an idea of what’s going on.
That area is extremely tight and some C1 s are too large (wide), or it could be rotated like mine is (was) so it’s pushing towards the styloid.
Or other structures that are causing compression. Regardless, it sounds like you are ill; this should be considered an illness or a condition that requires intervention.
What you’ll see is that for most of us unless we get to one of the doctors on our list, it is practically useless. So the good news is you found the place where the information is and members will help guide you towards getting help.
I’m not as knowledgeable on how to read the MRIs… But there will be information on that as well. You’ll see other people posting pictures and hopefully they’ll chime in.
Hi & welcome!
So sorry that you’ve had these symptoms for years, & are being fobbed off still, sadly it’s not uncommon on here! @Leah has given you good advice, I know in the UK it’s not as common to be given copies of scans as in the US, but if you could get yours that would be helpful. As @Leah said, the styloids are often missed by radiologists , especially if they’re not asked to look for ES. I don’t know otherwise whether the CT could be reviewed for ES, given that your jugular vein is distended…
If you are able to get a referral to another doctor, the Mr Hughes In London would be closest to you. NHS waiting times are so horrendous right now that unfortunately quite a few members have been forced to pay for private appointments, I don’t know if that would be possible at all for you?
I hope you can get scan copies, it’s rotten when you can’t be well for your family
I will try and obtain my scans the CT department have said I need to go in-person with identification to apply for the disc so I will make that a priority to get hold of.
The CT scan I had was with contrast and should have been an angiogram or venogram which is what I was told.
I am fairly close to Patrick Axon near Cambridge he would be my easiest location to get to. But could also see Mr Hughes if needed, is there a preference who is better to see out of these two.
Mr Axon is excellent- he did both my surgeries- but he does have a very long wait time, and also seems to have his hands tied at the moment to who he can do surgery for, a few members with complicated cases have been turned away after review by a surgical board. I’m not sure how long the wait is to see Mr Hughes on the NHS…
A CT with contrast should still be good enough to show if the styloids are compressing blood vessels- head pressure can be a symptom if the internal jugular veins are being squashed, and pulsatile tinnitus, where you can hear your heartbeat in your ears, as well as other tinnitus. There’s info about symptoms & what could be causing them in the Newbies Guide Section if you’ve not had a chance to look at that yet, & also vascular ES & the symptoms you can get with that, here’s a link: ES Information: Common Symptoms And Possible Explanations For Them - Welcome / Newbies Guide to Eagle Syndrome - Living with Eagle
I used to get head & ear pressure which would worsen through the day & be bad in the evening, or if I did any exercise or was stressed. Sleeping propped up a bit can help with it if you find it’s bad at night?
Did you have any vascular compression or obstruction?
Do you have a link to your symptoms and story. I Have the terrible ear pressure and head pressure that sometimes gets so bad it’s hard to cope usually later on in the day and yes exercise or stress it goes mad I’m wandering if this is because of increased blood pressure or flow.
I really hope Patrick would be able to shed some light, offer some relief or hope for me.
The scan I had was a CT angiogram cartoid arteries the said it was head and neck - will this scan be alright and show what’s needed I can pick it up on disc today
Sprinter,
I am so sorry you are going through this.
My symptoms sound similar to yours…
left neck pain (from back of ear down neck) left ear pain/fullness/itchy, multiple sinus infections, ear tinnitus, crunching with jaw/head movement, red eyes and a few bouts of weird eye blotchy/pixelated vision loss. I too would have to lay down later in the day to just “give my balloon head a rest” as I would describe it.
I have had 3 ear tubes and 2 Eustachian tube dilations on the left side in attempts to calm down the pain and inflammation.
My ES has a vascular component (left and right jugular veins blocked) per scans.
I am 3 weeks out of ES surgery on my left side. They found jugular vein blocked in 2 places, scar tissue wrapped around the jugular vein at one area, and calcified ligaments.
Immediately after surgery the left neck pain was gone (that overworked vein finally got some relief).
The Dr said it was a varicose vein in my neck, a smaller vein that was trying to take up the slack since the jugular vein was blocked. This meant the blood pressure in my head was high as the blood couldn’t drain out like it should.
I hope you can get evaluated by an ES versed dr.
The blood thinner Brilinta (60 mg 2x day) helped me with the pain until I could get to surgery. Dr. Hepworth uses Brilinta as he has found if it helps, it points toward Eagles. I think because it doesn’t have an anti inflammatory component (don’t take aspirin with it) so you are just able to see if thinning the blood alone helps (??I’m not sure why, maybe it shows a bone (styloid) blocking the vein vs inflammation??). It took 14-17 days on it before I got some relief from it (less head pressure, pain).
I’ve not done one story, just posted bits & pieces about, so can’t link that, I’m sorry!
I first had neck, facial & tooth pain, plus a salivary gland stone when I was first diagnosed, it was nerve pain from the Trigeminal nerve so I started on Amitriptyline, and that helped enough to make ES bearable, so I didn’t pursue surgery. But I then had a prolapsed disc C5-C6, & started getting vascular symptoms- the head & ear pressure, pulsatile tinnitus, constant off-balance feeling, like being a bit drunk, full blown vertigo, and a horrible rolling/ sucking feeling in my head. Sleeping propped up helped, & I had to stop exercising, I read up on here & IH sites, & found that it could be jugular compression, so I got a referral to Mr Axon (he wasn’t as busy then, & researching pulsatile tinnitus so was interested). I had a CT with contrast done at Addenbrooks (he likes scans done his way so I had to go there for it), & it confirmed bilateral IJV compression. I had a 6 month wait for surgery, & felt the benefit pretty much straight away, the worst IH symptoms were gone. I had the 2nd side done a year later- that was back in 2016 so the wait was 6 months, but is worse now…
I don’t think the scan will show jugular vein compression if they just imaged the arteries, so Mr Axon may well want it re-done…good that the radiologist has noted styloid length, that it a bit longer than average.
They’re really angled, especially the left side…& pretty thick at the top too. I think because of the angle on the left that there’s enough space between the styloid & the C1 to not compress the IJV between them, but I can’t really tell on the right side.
Hi @Sprinter . I"m in no way qualified to be giving opinions on CT scans, but I did notice some asymmetry in your throat. The arrows are pointing to your Vallecula (I think). As you can see the one on the right side of the screen (your left) is more narrow due to a small bump. This bump becomes hyperintense when the window settings are changed. This could be a normal finding that radiologists see all the time. I’m merely commenting on some asymmetry. Nobody is symmetrical but due to your throat pain perhaps this is worth double checking with your doctor.
I do have a lump left side of throat that is visible from the outside especially when I look up I thought it could be boney from touch. I am not sure what it is but I have today informed the doctor who said she would request an ultrasound to get it checked.
Hi @Sprinter,
The large arrow in this screen shot is pointing to an artery. The small arrow is pointing to your internal auditory canal. Your vestibular nerve (and facial nerve) travel from the inner ear, through this canal to the brainstem. Sometimes arteries can deviate or compress the vestibular nerve which would cause issues such as tinnitus and dizziness.
As indicated there is an artery in the region of where the nerves travel, but CT scans do not show nerves. A hi-resolution MRI would be needed to see if there is any interaction between the nerve and artery…
The “head noise” you mentioned, could it be better described as tinnitus in your right ear? The “head pressure” is it on the right side in your ear region?
“Arterial loops” are seen in 30 percent of imaging. By no means is am I trying to suggest you have a nerve compression. Plus the impact of these compressions, even when found, are highly contested. But I think it would be hard for your doctor to ignore these types of questions and concerns. It seems your doctor is content with “Anxiety” as the diagnosis, but you can point out to him anxiety is a common symptom of vestibular issues. Hopefully questions like this can renew some interest in your case from your doctors. Or perhaps questions like this could be a detriment because I’m not a doctor and could be completely wrong…
Just a remark with regards to the anxiety comments made by your doctor. Whether or not you agree or disagree with that analysis, I think it is important to practice some sort of “mindfulness” as dealing with difficult medical diagnosis in itself is an anxiety ridden process.
Yes it’s right sided the ear pressure and all problems Brain noise and tinnitus. I have a right side thrombosed pressurized vein coming down my neck that came up since all this started and it swells if I do anything physical or drive too much
