TML was extremely kind and looked at my images. This was his feedback.
See attached annotated images. Reminder I am not a doctor nor radiologists, these are just my two cents.
In the axial view, everything on the left side of the image is actually your right side of the body and vice versa.
Your right IJV appears to be your dominant IJV given it being quite a bit bigger than your left IJV. However, your left IJV is more compressed against C1 than your right IJV, and the calcified pocket of stylohyoid ligament on your left comes very close to your left IJV. I suspect that any intracranial hypertension symptoms are coming from here (e.g., headaches, head pressure, brain fog, etc). I checked the full lengths of your IJVs all the way down to your heart and I don’t see any other compression points. Of note, when an IJV is compressed, it is possible the vagus nerve becomes compressed too. It runs between the IJVs and C1. Vagus nerve issues typically present as acid reflux, stomach issues, heart rate and blood pressure variability.
Couple of other things to note. Both your calcified stylohyoid ligament pockets appear to be displacing your ECAs on their way to the ears. I’m seeing this commonly in ES imaging. It is possible that this and/or IJV compression is causing ear symptoms like fullness and tinnitus if present.
Also of note, your left calcified stylohyoid ligament comes in close proximity to your left ICA (see image titled “drea4”). The spacing is pretty good on your right side. I suspect with some head movements there could be moments that the stylohyoid ligament brushes against the ICA. But wouldn’t know unless you got dynamic imaging.
I think at this point, I need to look for a doctor who specializes in vascular ES. I’ve seen others mention Dr. Hepworth in Denver, Dr. Hackman in North Carolina, Dr. Bunnell, Dr. Nakaji in Arizona, and Dr. Costantino in New York—unless someone knows of a vascular ES doctor here in Texas.
I think @Isaiah_40_31 and @Jules will be the best in knowing which surgeons could be best for you given your geographic location! I think one that knows C1 shaves could be ideal, looking at how snug your left IJV is against C1. We know based on your MRI that you have ruled out CCI, so I think C1 shave could be safe for you in the right hands!
@Drea - The doctors we’d recommend (from nearest to farthest away from you) are Dr. Nakaji in Scottsdale, AZ, Dr. Hepworth in Denver, CO, & Dr. Costantino in White Plains, NY. Dr. Hackman & Dr. Bunnell don’t specifically do IJV decompression surgeries alongside styloidectomies, however, Dr. Hackman does do bilateral ES surgeries & does cut the styloids very close to the skull base which has allowed some of our vascular ES members to get relief from their symptoms w/o having to have further surgeries. Since your IJVs are most likely being compressed by your calcified stylohyoid ligaments & not the styloids, you would be safe seeing Dr. Hackman as just having those calcified sections of stylohyoid ligament removed should be all that’s needed to allow your IJVs & carotids to recover. You could also see Dr. Chan-Leveno who’s even closer to you, at least to get her opinion.
One of our members has recently said that Dr Nakaji needs a dynamic manometry flow venogram CT before accepting a referral, so that’s something to bear in mind…
Dear Drea, I’m so sorry to hear your story. I’m in the Dallas area and was recently diagnosed with ES by Dr. Lee Pride at UT Southwestern. He was looking for things typically associated with pulsatile tinnitus (sinus stenosis, fistula, etc.) as I started experiencing that along with hyperacusis earlier this year. He had more MRA’s and CT’s done (I already had several others done) but he was the one that diagnosed me with ES and then referred me to Dr. Babu Welch at UTSW, who confirmed the diagnosis on 8/26 and then performed surgery on 9/5. I’m 5 days post surgery and I’m still suffering from PT and hyperacusis, but I’m hopeful that once the swelling subsides that I’ll get relief.
I understand how discouraging it can be, but keep looking for answers.
@TexasEagleSuffer glad to hear you got surgery! I suspect your tinnitus and sound sensitivity should get better over time.
I suffer from sound senstivity as well, but seems to fluctuate with how anxious I’m feeling. I do wonder sometimes if it’s SSCD or if it’s just facial nerve irritation or anything else that might mess with the ears (ECA, IJV compression). My guess if it’s ES related that it’ll resolve once the nerves and such settle down after surgery which can take time!
SSCD stands for superior semicircular canal dehiscence syndrome. It’s when bone in one or both inner ear(s) deteriorates. Symptoms can be similar to vascular ES, including vertigo and dizziness, balance issues, hearing issues. And sound sensitivity - hyperascusis and sensitivity to inner body sounds as well.
There’s theories in the forum that IJV compression caused by ES can put pressure on the inner ears and thus cause deterioration. Studies show that 2% of healthy people have the holes in the inner ear but most don’t have any symptoms. Perhaps IJV compression is a factor that can make the symptoms more likely to occur.
I’m not insinuating that you have SSCD, but if after you are fully recovered from your surgery and you still have the hyperacusis I’d look into it. There are surgeries for it if it is present
Thanks. I never heard of this before, but I also never heard of ES until 4 weeks ago. The interesting aspect of my case is that the pulsatile tinnitus and hyperacusis basically started at the same time - within a month or so of one another. I just hope and pray that once I heal from the surgery that everything goes back to normal. I’ve never had any balance or vertigo issues - so hopefully that continues.
I’ll let other members speak to post-surgery results as I haven’t had it yet, but I will speak to some of the research side of things. A potential culprit of hyperacusis is facial nerve irritation/damage (which is common with ES). Hyperacusis is commonly associated with anxiety in the literature but there isn’t much research as to why. It could be because when you are in an anxious state you are tense and it heightens your senses such as hearing (the same sort of tenseness your body will do when about to hear a loud noise, like shooting a gun, hearing fireworks, etc). Given that our vagus nerves are often compressed/irritated with ES, our anxious states are more frequent. Also with anxious states we tend to contract our jaw and many members with ES complain of TMJ symptoms. A branch of the facial nerve runs directly over the TMJ, so if there is any inflammation in the TMJ it could inflame the nerve pathway that stimulates the middle ear muscles that are known to contribute to hyperacusis.
So I think there could be a couple things going on - 1) your facial nerve was irritated by surgery and is causing hyperacusis, 2) your styloids have caused chronic irritation to the facial nerve and is causing hyperacusis, 3) combo of 1 and 2 (which IMO is most likely since you had hyperacusis before surgery), 4) ES has caused jaw tension and TMJ issues causing hyperacusis, 5) 1, 2, and and 4 combined.
If it is facial nerve related, I suspect that you will slowly get better as the nerve gets less angry. I might look into getting a TMJ mouthguard (like an NTI) if you are finding you are clenching your jaw a lot. I sleep with one now and my immediate hyperacusis in the morning is less.
Thanks. I started wearing a night guard on 28 July and that helped with the hyperacusis. I was supposed to see a TMJ specialist, but this all superseded that. I’m not seeing the TMJ specialist until 15 Oct.
If it is the jaw, it could be helpful to be mindful of your head posture, the further forward your head is the more pressure on the TMJs, so if you can keep your head above your shoulders it could help. I’m really bad with forward head but I think my body is doing it to counteract my hyoid and styloids.
Very interesting info, @TML! It applies to me as well! I started having Middle Ear Myoclonus several years ago which is a muscle twitch of the stapedius muscle. I investigated when it started & found the facial nerve innervated the stapedius muscle but didn’t see any mention of hyperacusis also being related to the facial muscle. I have hyperacusis in my left/nearly deaf ear so now I see there’s a potential connection between the hyperacusis & the MEM symptoms.
@TexasEagleSuffer - It’s normal for symptoms to worsen over the course of several weeks after surgery because of the post op swelling. It can take 6-8 weeks for the swelling to decrease significantly, but symptoms that increase early on, also often begin decreasing w/in the first month post op. I think @TML has given you a good explanation about the potential hyperacusis increase.
Visual changes post op aren’t something I’ve heard of on this forum so I’m a bit concerned about that for you unless that was a problem before surgery. if it’s something new, it would be worth getting an eye doctor appointment ASAP.
I sympathize with you about the hyperacusis. I have to wear an earplug in my affected ear when I eat at a restaurant, sit in church on Sunday (especially during worship), anytime I’m around loud voices/sounds for an extended period, & even when I brush my teeth at night w/ my electric toothbrush. It’s pretty annoying!
Thanks for that info about the facial nerve @TML !
@TexasEagleSuffer if you had visual problems before surgery it could be swelling causing some vascular compression again which is normal until things settle down… Is your eye feeling dry & gritty at all? Sometimes the facial nerve if it’s irritated can affect the ability to blink, so it might be yours is a bit slow & it’s making your eyes a bit drier? Just a guess though…if it’s new it might be an idea to get it looked at like @Isaiah_40_31 says… I hope all these things soon settle down for you
Yes, the hyperacusis is really annoying - so is the Pulsatile tinnitus. The hyperacusis has made being around my grandchildren (4 under 4 years old), very difficult. It was getting better after I started wearing a night guard on 28 Jul, but it got worse (like before wearing a night guard) about 2-3 days after surgery. I’m hoping that you are all right that this will get better as time goes on.
One of the other weird things is that I used to get relief from the Pulsatile tinnitus by opening my jaw very wide, turning my head to the right, moving my jaw toward my throat, but I don’t get relief doing that now. However, I do get relief when pressing down on the top of my head, which I was able to get relief prior to the surgery. This ES is certainly disruptive!
