Bilateral Tinnitus at onset (alternates between pulsatile most of the time and constant other times)
Progressively getting worse over the years, more in right ear then left
Aural Fullness
Hearing sensitivity
Burning in ear (occassional)
Dysphagia
No cause could be determined from barium swallow
Popping and clicking when swallowing
Rocking feeling throughout day and at night lying in bed
Jaw, neck, and ear pain
Jaw popping (TMJ is being addressed, but no disc issues according to MRI)
Increase in anxiety (though who doesn’t when faced with weird symptoms and no clear path)
Lump under right ear, pain in region
Clicking when pulling down on skin under ear/SCM on right side
Migraines that are less likely if sleeping on wedge pillow
Tilting head up towards ceiling causes the neck pain and tinnitus to grow much worse
I have had hearing tests up to 16K Hz and no hearing loss detected to explain. Barium swallow was unable to determine cause of dysphagia and feeling like something was in the throat. ENT was unable to see any issues with Eustachian Tubes. Most of the pain and symptoms are on my right side.
4 ENT visits, 6 Dentists, countless PT’s and 2 Neurologists have left me with a lack of answers. Finally one of the PT’s I was seeing recommended Eagle’s syndrome as a possibility, or at least the potential for compression going on in the region.
I had a CT Angiogram completed based on another doctor’s recommendation, and was hoping someone here might be able to take a look and see if anything stood out. I have done a little homework up until this point, and the best I can tell the styloids do not look elongated, but potentially thicker for both and deviated. The left one appears to be segmented at the very top, with the right being thicker. Since most of my symptoms are primarily on the right side, was unsure if there was a connection there.
I sincerely hope everyone is doing well. At the very least this community seems much more uplifting than others I have come across in searching for a root cause on these symptoms. Here is to hoping we all find the reason for our pain and get back to life.
I am unsure on protocol for posting images, but will continue to look through the site!
Thanks Isheep, really appreciate the welcome. I am sorry you are also going through this. Hoping that we both get some answers and start feeling better soon. Even if it’s just ruling out possibilities.
@JGont - Because you had a CTA, only your carotids are visible in the images you posted. The symptoms you’ve described i.e. ear fullness, tinnitus/pulsatile tinnitus, headaches, rocking feeling & worsening symptoms w/ your head in extension point more to possible internal jugular vein (IJV) compression. I’m sorry the doctor who referred you for the CTA didn’t just suggest a CT w/ contrast as both carotids & jugulars would have been visible then. In order to see your jugulars, you’ll need to get a CTV of your head & neck, & if you can get it done dynamically i.e. w/ your head turned L/R & looking up/down, that will provide better evidence for/against IJV compression.
You’re correct your styloids aren’t long but the right one is quite thick. The way it appears to be slightly pressing on your internal carotid artery (ICA) suggests that it may be causing compression of your IJV & potentially your vagus nerve as the IJV & vagus both exit the skull very close together. The vagus compression would help account for your increased anxiety level & the IJV compression, the other symptoms I mentioned. I’ve annotated an image of your right side to help you understand what I see. The segment of calcification on the left that’s separate from your styloid is calcification of your stylohyoid ligament just below your styloid.
If you can upload a picture of your axial image (4th picture) closer to C1, I can point out your styloid & IJV there. I think I can see those on the present image but am not certain enough to annotate them. Here’s a tutorial that @TML gave us about how to ID important structures at the level of C1.
One other thing of note is that you’ve lost your lordotic cervical curve. When the natural curve of the cervical spine is gone, the styloids & greater horns of the hyoid bone naturally move closer to the nerves & vascular tissues in the neck. It’s possible to restore the proper curve, but it takes time & patients. Some PTs are educated to help with this and we also have an excellent discussion thread that is helpful, too. List of my favourite resources on YouTube to learn anatomy
Thanks very much for your response. I have loaded the picture below that I think may be of additional benefit. Appreciate the insight on the lefty side being calcification and not just a break.
I am sorry that the CTA did not show the jugular. In the notes to the tech it had specified that the doctor also wanted to see that phase as well. Something to know as I move forward.
Very much appreciate the look and any additional insight you might have on the new image. I am aware my neck curve is gone, I have been attempting to restore using towel exercises and posture training, but it is certainly not easy. In many cases it sometimes exacerbates my symptoms, which is why I am hesitant to continue before speaking with someone who might be able to give me a better idea of what is happening with these nerves.
If doing the cervical curve exercises is making your symptoms worse, then you’re doing the right thing by stopping them for the time being. In retrospect, I should have added that we encourage our members to wait until they’ve had their ES surgery(ies) to start that process. It does take a long time i.e. quite a number of months to restore the curve to some degree, but I’m glad you’re aware you’ve lost it & started working to restore it even if you have to stop for the time being.
Your C1 vertebra is different than we usually see but may be a normal anatomical variation. It’s something to ask about when you have a consult for ES/vascular compression. I’ve circled the areas that look abnormal to me. You have quite a “bridge” w/ a blood vessel passing under it on the left & a more minor situation of the same type on the right.
Hi & welcome to the site!
I had bilateral IJV compression by the styloids, & had similar symptoms- a constant off-balance feeling, ear pressure, (& head pressure), pulsatile tinnitus, headaches after laying flat, hyperacusis… These have resolved with surgery although I didn’t have any C1 involvement- looking at your images it looks like the C1 could be an issue as well as the styloids.
Can you get back to the radiology dept where you had your imaging done? It might be that they have more images they didn’t give you?
Hello Isaiah, thanks for the additional notes. I have a preliminary appointment with Dr. Hepworth’s office in a few weeks to discuss all of this further. I eill be sure to add this to the list of things I want to discuss.
The C1 bridge has been described to me by one Chiro I saw a few years ago. Apparently it’s a normal variation in some people, but that’s not to say it isn’t also causing problems. He had told me that migraines are a more typical complaint in his view when people have these. Ponticulus Posticus is the term I believe.
Hi Jules, thank you for the warm welcome. It’s amazing how much more welcoming the site is from others I’ve seen in the last few years.
So glad to hear that you have found relief, it gives me hope that maybe I can get there too. The symptom overlap is astonishing. My biggest complaint is the constant worsening of the tinnitus and hyperacusis, it’s now starting to be painful just hearkng everyday noise. Audiology tests show no hearing loss though, so I have been at a loss for a root cause.
I have asked the radiology department if there were additional images, but they have confirmed the files provided were it. Dissapointing, but not entirely unexpected at this point. Medical has not been very forgiving these past few years.
My apologies, I see now that you were originally requesting a different image. I have loaded two below based on the video tutorial from TML (hopefully got it right). Thanks so much for all the help and support!
@JGont - Thank you for the additional pictures. I can clearly see that your right IJV looks at least somewhat flattened i.e. it’s oval shaped vs round. I marked what might be your left one but it’s quite small & also looks flatter than it should if what I marked is correct. It’s not unusual for one IJV to be substantially larger than the other or for one of them to be “hypoplastic” i.e. under-developed so not very functional. This may be true in your case.
I’m really glad you have an appt. w/ Dr. Hepworth coming up. He will be able to give you more accurate information. He’s a great diagnostician!
Good it’s not too long until your first appointment with Dr Hepworth’s office, presumably his NP? @Isaiah_40_31 has given the advice to make another appointment before you leave if that’s appropriate as the office communication can sometimes be iffy!
Hello @Jules, thanks for the tip. I made my original appointment back in November after calling for a few months with no luck getting through. Will absolutely schedule a follow up after the appointment with the front desk.
Do NOT let them discourage you from making an appt w/ Dr. Hepworth himself. It used to be that 2 appts were scheduled for initial consult i.e. the first one w/ the NP on a Tues & the second w/ Dr. Hepworth the following Thurs w/ Wed. being the day to get the IJV ultrasound. It seems things have gotten busy enough there now that protocol is no longer followed. I hope you can get in to see Dr. Hepworth or at least have a telehealth follow-up not too long after your initial appt.
Hello @Isaiah_40_31, thanks for the encouragement. I will definitely make sure I set up an appointment with Dr. Hepworth. I have seen nothing but good things on this site on how he looks into the problem. I am very much hoping to get some answers for the issues that have been plaguing me for the last three years. It has taken time away from my life and impacted my wife as well. At the very least I hope I can eventually get the painful burning from noise to go away from the last few weeks!
I know he does not typically handle SSCD (Superior Semicircular Canal Dehiscence), but it is another condition that has been brought up by a few doctors in the past I would also like to discuss with him.
You’re correct that Dr. Hepworth doesn’t do surgery for SSCD, but he will give you a referral to someone who does do the surgery, most likely Dr. Quinton Gopen at UCLA Medical Center. I also have a form of dehiscence (not SSCD) but Dr. Gopen is very specific about only doing SSCD surgeries so he turned me away.
