Made an account 15 years ago and I'm back looking for advice (with images)

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Hey All,

About 15 years ago I made an account convinced that I had eagles after some imaging but then was discouraged by many ENTs and primary care docs saying my symptoms were just a combination of TMJ issues, anxiety, and acid reflux. In the last two months I’ve now had two CT scans that show an internal jugular stenosis only on the left side, caused by an atypical styloid process with medial curvature pinching the jugular between the transverse process of the c1.

The radiologist reports say “The left styloid process is directed/angulated slightly more medial than the right and because of this causes significant extrinsic compression (approximately 80% luminal stenosis) along the anterior aspect of the left internal jugular vein which is slightly hypoplastic when compared to the contralateral right internal jugular vein. Although the left styloid process does not compress the left ICA it is conceivable that it causes compression/irritation ofthe cranial nerves in this region especially if symptoms occur upon palpation of the styloid process tip or when patient turns their head. Clinical correlation recommended.”

Here are images of the axial view of the jugular stenosis:

3.25 ct axial view of jugular luminal stenosis.pdf (360.4 KB)

3.25 ct axial view of jugular luminal stenosis v2.pdf (365.4 KB)

Here are images of the coronal view where the jugular is pinched between the styloid and C1:

3.25 ct frontal coronal view position of styloids .pdf (424.0 KB)

Here are other images:

2.24 ct 3d view of left styloid vs c1.pdf (385.9 KB)

3.25 ct lateral view of left jugular stenosis.pdf (417.1 KB)

3.25 ct lateral view of left jugular stenosis v2.pdf (419.0 KB)

3.25 ct lateral view of left jugular stenosis v3.pdf (420.1 KB)

2.24 ct 3d view of left styloid vs c1 v2.pdf (382.9 KB)

Right now my symptoms are:

  • Pain in left side of throat, neck, face, ear and radiates to muscles in trapezius
  • Discomfort swallowing, feels like I can never relax my throat
  • Tinnitus (high pitch and hearing pulse)
  • in the past month I’ve also been getting very dizzy when doing mundane things or lay in the wrong position as well as running out of breath easily
  • All the pain and discomfort gets worse in evenings at night despite alternating heat pads/cold compress/ibuprofen/tylenol

Today I was told by an ENT that my symptoms cannot be explained by jugular stenosis and that these are all just explained by a complex of musculoskeletal problems such as my posture, tongue positioning, etc. and that he would only recommend Physical Therapy.

My questions are:

Has anyone else dealt with this level of unilateral luminal jugular stenosis. DId it cause similar issues?
What gave you temporarily relief and is this something worth pursuing surgery to shave down the styloid process or transverse process of c1?

Thanks all - any/all advice is appreciated because this appointment with the ENT today just killed all hope I had moving forward.

Thanks,

Ty

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Although I don’t know if I had any jugular decompression with my case, I can say the following:

I went through a handful of doctors for the past 12 years due to eagle syndrome. My left styloid was taken all the way down to the base just around 2 weeks ago, it was 3.6cm.

It took jumping through hoops and multiple ENT’s until I got an appointment with a surgeon who primarily completes head and neck surgeries on cancer patients. He acted like a styloid resection was extremely simple when other doctors basically said they couldn’t safely remove it and it wouldn’t solve any symptoms.

I had tinnitus frequently, neck pain, ear pain that would drive me crazy, trouble swallowing, occasional dizziness(less frequent) and anxiety.

right now I’m healing and the only thing I’m dealing with now is first bite syndrome(common after surgery)

No more ringing in the ears or trouble swallowing. for me the key was finding the correct person to remedy my elongated styloid. From my understanding some will treat for jugular decompression and others don’t believe in it but that might be incorrect.

It took me around 12 years. Symptoms started at 20 and I just got the surgery at age 32. I’m really glad I finally went through with it because overall it’s debilitating. So far everything is looking up.

I had 0 relief with over the counter meds and Ice/heat prior to surgery.

I hope you keep chasing answers until you find someone able to treat your issues.

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Yours is so similar to my situation, and I really appreciate the reply – gives me hope for second opinions I have appointments set up for but they’re about a month out so I just need to hold on. Thanks so much

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Totally can relate to all your symptoms. I am sorry you were dismissed by your previous doctors and ENT. It seems a lot of us on the forum have had similar experiences.

I just want to encourage you not to give up hope and that you will get so much good information here that will help you make your next move!

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Hi & welcome back!
It’s great that your radiologist gave a detailed report, and recognised what was happening with the styloid process, but so frustrating that your ENT dismissed this!
There’s more awareness with ES now and jugular compression amongst a handful of doctors who are treating this, so don’t give up, there is help out there!
Looking at the images, it seems that your styloid process isn’t that long, but a section of calcified ligament is pinching the IJV between this and the C1 process. It varies very much between people how much they’re affected by the IJV compression, some people develop collateral veins in the back of the skull which take the blood flow away from the brain, & then they aren’t as symptomatic, others have what doesn’t appear to be much compression but they feel pretty ill with it…
It sounds as if you’re getting the more ‘classic’ ES symptoms of nerve pain around your throat, ear, shoulders and the trouble swallowing, along with more vascular symptoms like dizziness. The vagus nerve can also be affected and this can cause breathlessness amongst other things. Here’s a link to info about common symptoms & what might be causing them, including vascular symptoms- this wasn’t written when you first joined so you might not have seen it:
ES Information: Common Symptoms And Possible Explanations For Them - Welcome / Newbies Guide to Eagle Syndrome - Living with Eagle
As you mention dizziness with certain head movements, it might be that there is some compression then on the carotid artery, and your report mentions that’s a possibility…
Given your radiology report, it would be a good idea to try seeing one of the doctors most experienced with vascular ES, if you’re able to travel? Dr Costantino in NY and Dr Cognetti in PA both do phone consults I believe, otherwise Dr Hepworth in CO, Dr Nakaji in AZ and Dr Fargen in NC all treat VES, but do have quite long waiting times. Then if a C1 shave is felt necessary, or there’s any soft tissue compressing the IJVs as well, they can do this too. Here’s a link to the Doctors list so you can look up the doctors’ details:
Doctor Lists – no discussion - Symptoms and Treatments / Doctor Information - Living with Eagle
Sleeping propped up might help with your symptoms, muscle relaxant medications and nerve pain medications might be helpful too. There are also a few supplements that have been tried to help with the head pressure from IJV compression, if that’s uncomfortable for you, here’s a link to that info:
ES Information- Treatment: Pain Relief, Medications and Alternative Therapies - Welcome / Newbies Guide to Eagle Syndrome - Living with Eagle
I hope this helps & encourages you to push for treatment!

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@Ty1 - So sorry you’ve had to come back! It sounds like the early medical advice you were given in 2013 wasn’t accurate, but as @Jules said there is a tremendous amount more information about ES now & more doctors have an understanding of the symptoms the styloids can cause even if they are NOT elongated but display other physical features such as being very thick, curved, angled, bent, twisty, pointed, etc.

Yours falls into the not too long but thicker than normal category in my mind, however, as Jules also noted, it doesn’t appear to be bothering your IJV but some calcified stylohyoid ligament is. If you scroll through pictures 5-7 you can actually see the calcified ligament “move” down your IJV & away from C1. In picture 5, the ligament is pushing your IJV against C1 but by pic 7, it no longer is.

The other thing I noted is that your left temporal bone looks like it’s sitting on the left transverse process (TP) of your C1 vertebra. Sure haven’t seen that situation before, but it’s not normal & could also be presenting a problem.

Last but not least, you’ve lost the natural curve in your cervical spine which naturally brings the styloid & greater horns of the hyoid bone closer to vascular tissues & nerves in the neck. The curve can be restored w/ gentle PT exercises but it takes time & patience. Better to wait until your IJV situation is dealt with before working on that.

The greater horns of your hyoid look pretty long in one picture, but I think that may be due to the angle of the image.

Here are a few pictures I annotated for you:

Ty1.pdf (973.4 KB)

Ty1.2.pdf (553.6 KB)

Ty1.3.pdf (506.2 KB)

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Thank you so much for all the info Jules, this is really helpful and getting started on the Neuroplastics/Mind-Body connection info while I wait for other appointments. I really appreciate the support

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Dude, this is awesome. You caught things that neither radiologist caught from just a few stills!

Once I find an ENT that is willing to listen I’ll work with them on the compressed left IJV, the calcified ligament (which I think is where I’m getting the discomfort with swallowing, especially when I really try to relax my throat muscles), and the Atlas’ left TP contact with the temporal bone (i wonder if this was caused by chiropractic neck adjustment or possibly head trauma when i was a kid).

Once I have a plan for those things I’ll work at restoring the cervical neck curvature with a PT. I really appreciate the thought you put into this and the annotations on my images, thanks so much

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@Ty1 You’re most welcome! @Jules & I both became forum members in 2014 so not too long after you did, but since we’ve stuck around here all these years, we’ve seen the very positive changes that are coming about regarding knowledge & treatment of ES in it’s various manifestations, & we’re able to pass along what we’ve learned to our new as well as returnee old members (yup, there are a few!) in conjunction with all the help we get from our wonderful forum members.

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