Hi all, sorry the update has taken so long. I had the cranial angiography back in early August, and Dr. Kaminsky said my jugular was NOT compressed. Initially, Dr. Hepworth said that the Plavix removed whatever was blocking my jugular. Or at least that was what I understood. So at that point, no surgery. But then I saw him yesterday, because my ear pain returned after rinsing my sinuses. Then he told me that I have a “dynamic compression”, which means it’s only there when I move my head a certain way. So all of that testing was apparently for nothing because Dr. Kaminsky didn’t have me turn my head. And now we’re back to “eventually, if you want to get rid of all your symptoms, you’re going to need a styloidectomy.” Frustrating.
Also, a question. Has anybody else had a problem with tinnitus as part of their Eagles? And, more important, did anybody get resolution from tinnitus after surgery?
Wow it’s so good to hear from you! I was wondering what Dr H said about the angiogram. Plavix has really cleared up my symptoms and I have my angiogram Friday with Dr. Kaminsky. I’d be, um, to put it lightly, pissed to find out the testing was all for nought considering it’s a pretty invasive test. After hearing your experience I’m fully prepared for him to tell me the same thing though - that it’s all fine.
I have have pulsatile tinnitus — heartbeat in my head — and whooshing, which sounds like someone’s running water inside my head? If that makes sense. Sometimes also feels like the air is getting sucked out of my ears or something. It’s a really weird sensation, but not the traditional ringing. Seems worse when I’m lying on my side or bending over or exerting myself. Did Dr. H recommend further testing or just surgery?
I’ve had tinnitus - just a ringing tone - for much of my life in both ears. Now, finally, my left ear has some relief after that side surgery. The news about your test results is definitely frustrating!
Grumble!! You’d think a vascular specialist, in particular, would know to check for vascular compression w/ the head turned in all directions i.e. left, right, up, down & even diagonally up & down when ES is involved. In my mind it’s obvious that compression won’t show in every head position & is based on the angle of the styloids relative to the cervical spine & the jugular & carotid arteries.
It is true that in most cases, ES symptoms don’t go away w/o the styloids being removed so that process will be in your future when you’re ready.
Tinnitus is a common ES symptom. It goes away for some people but not others. I, like anharris have had tinnitus most of my life so if it got worse from ES, I didn’t notice it. I acquired Meniere’s Disease during the time I was dealing w/ ES so I do have one ear that has significant tinnitus all the time. It’s so loud, I often can’t tell if the other side is ringing or not.
So sorry that the testing didn’t show the compression! Frustrating… I had bilateral jugular compression, I had pulsatile tinnitus because of the head pressure, but that’s pretty much gone now after surgery. I do get some ringing tinnitus, I think that it’s improved since surgery, it’s not too annoying, only occasional.
Do you think you’ll opt for surgery?
I do, I get the sounds. Except I imagine tinnitus to be sort of a specific type of ringing. I don’t have the typical tinnitus all the time. Mine ranges from ringing to roaring sound, to sounding like I was underwater, to sounding like I was in a train that was passing through a long tunnel, to hearing or feeling like if air was passing from my nose to my ear. ( I know sounds strange. But I don’t know any other way of explaining it.) The heart beat in my ear sound I definitely get that one. As someone mentioned exertion definitely triggers it. I did purposely bend over and tried to hold the position to see if it triggers it, and it does! Asthma triggers it as well. Except when I do get the ringing. The ringing hurts like a vibration. Also certain pitch sounds hurt. For example, I may have the tv on. A commercial might come on and the sound will hurt my ear like a vibration but as that portion of the commercial of person talking, or sounds playing are over, the vibration will stop. Other times it’s a sudden jolt or a snap as if someone snapped a rubberband and popped the inside of my ear. I used to think it was a migraine warning but now that I know I have ES, and now that I am understanding more more. I believe it is related more to ES than to a Migraine auditory warning. Also I have had several ear exams and they cant find anything wrong with my ear. Although I hear certain sounds muffled and other sounds are painful. I seriously feel there needs to be more study to ES and the linked conditions such as compression, Earnest syndrome and many other things that I see people complaining about. Not only is this rare but medics are trying to explain it off easily and are looking at the body in parts instead of looking at the body as a whole. That is an intricate part of the body that can easily affect many things at once. I also wish there was more discussion on how it can affect the vocal cords and nerves. I have unexplained voice loss and I feel it is related because it started at the same time of me not being able to turn my neck, etc . They really need to call this “Eagle’s Syndome, Earnest syndrome, Lymphadenitis, Tinnitus, and a Bunch of Other Things We Don’t Yet Know”! Or just call it “Eagle’s Trojan” as it comes packed with a host of other issues when you start to unpack it and break it down. I’m penning that term from now on "Eagle’s Trojan"*
I wish I can invite this entire group to a doctors visit. Would love to see the look on a doctors face as he/she listens to an entire group of people explain their ES symptoms.
EXCELLENT POST!!! I LOVE IT - Eagle’s Trojan. What a great name!!
I also love the descriptions of all the types of tinnitus & ear/hearing sensitivities you have as they are a great description of what I’ve been through since 2015. I blamed mine on ES, & initially, at least some of the “tinnitus symphony” may have been related, but ultimately, I ended up w/ Meniere’s Disease from a head injury sustained in a cycling accident between my ES surgeries. Meniere’s made my tinnitus go wild & that’s when I began to experience everything you’ve described. I also had surgery for Meniere’s to keep me from totally losing the hearing in my left ear. It’s helped moderately. My hearing & tinnitus are still a roller coaster ride being set off by who knows what & then miraculously resolving only to repeat the process at some future time. Vertigo also comes & goes, but I’m very blessed to get what I call “high functioning vertigo” as it doesn’t lay me out flat. I have found when I get a more severe case that lying down actually makes me nauseous, but if I stay up & keep moving, even if I’m walking like I’m drunk, the nausea stays away. Curious.
I’m totally on your page as far as wishing any doctor who doesn’t know about ES or limits the symptoms to only certain ones could have a panel discussion w/ a group of us who’ve had this syndrome. There are just so many crazy symptoms.
BTW, your vocal challenges are coming from irritation to your vagus nerve - an oh so common issue w/ ES. The vagus nerve has control over many of our body functions & is our largest cranial nerve. It affects functions ranging from skull base to groin & many locations in between. The good news is, once the styloid(s) are removed & the vagus nerve recovers, the symptoms it caused often go away or are at least minimized.
Thanks again for your bit of humor. I needed a good chuckle today.
Yeah, I think there is some kind of disconnect between the ENT and the neuro radiologist in terms of what they’re looking for. I’m sorry about the loud tinnitus. That doesn’t sound like fun at all!!
@blossom Hey – looking forward to hearing how yours went. I need to check the posts to see if you’ve given us an update!
He’s not recommending any further testing at this point. He gave me steroids to see if they reduce my symptoms. Haven’t started them yet, because I had a procedure yesterday to release my tongue tie. One thing at a time! Next, he wants to do a procedure where he shrinks whatever those things are in my nose. But he says that eventually we will have to discuss styloidectomy.
I have no idea if I will opt for surgery. My brother is a doc, and he is opposed to it. He’s an anesthesiologist, so he sees a LOT of stuff go wrong during surgeries. So I think he’s just a big fan of leaving well enough alone until it gets too bad to tolerate. And now that he talked to Dr. Kaminsky, who said my cranial pressure is fine, that is what he’s inclined to believe. As for me, I’ll just have to see if and when the symptoms get to be intolerable.
I hope your tongue surgery heals quickly. I know that’s a sensitive area so also hope your pain is low grade to non-existent.
I’m guessing you’re going to have a turbinate reduction. I had that done because my nose whistles annoyingly. Sadly, it didn’t help. Haven’t figured out yet what’s causing the problem. The turbinate reduction was pretty painless & quick to heal.
Even though your brother has is in the medical field, he may not have observed a surgery done by a doctor who is experienced w/ ES & knows the proper surgical procedures which minimize nerve, muscle & soft tissue injury. The anesthesiologists I had for my two ES surgeries along w/ the nurses & other medical staff in the surgery center couldn’t say enough good about my doctor’s surgical skill. They were right. He did a great job. Having ES surgery is one of the best choices I’ve made in my life. That said, waiting until your symptoms are challenging your life enough to make surgery worthwhile is also a good choice.
Dr. Hepworth’s reputation as a great surgeon is well known. You’ve made a good choice by seeing him.
Lol, you are welcome. I’m happy my post brought at least one person a little chuckle. Laughter is good for healing. I’m also glad you mentioned the vagus nerve. I had started tracking nerves as culprits because I read a journal that mentioned the vagus nerve as linked to ES. Also, many other symptoms I am experiencing are also linked to the Vagus nerve or one of the other cranial nerves. I brought it up to 3 doctors this past month and they brushed it off. I guess I don’t have a medical degree so I can’t possibly know what I am talking about (sarcasm) according to them. However, I will keep pushing. The doctor that diagnosed me was the only one that did not brush it off. However, I didn’t feel I had enough time to mention the other symptoms. He did say we will have to see what happens. He said he will only really be able to tell once he opened me up. He was not sure because of the extent of my vocal cord issue. Typically he has only known about mild voice issues but I am unable to speak and both my cords have stiffened. Only using false cords now for sound. Of all people, I mentioned it to my Neurologist and she acted like she had no idea what I was talking about. Let alone when I mentioned the Doctor diagnosed me with ES. If only you saw her face. It literally went blank. She just told me to wait and see after surgery and not follow up with her unless the surgeon referred me. Smh. Well we know if he does, I’m definitely not returning to her! I had brought it to her attention because I thought the listing of Doctors that diagnose ES, mentioned Neurology. I think I chose the wrong type of Neurologist.
How exactly were they able to differentiate the sound was caused by Meniere’s Disease as opposed to Eagle’s Trojan ear symptoms? Sorry if sounds silly question, I’m just learning about Meniere’s. I think I had it confused with Legionnaires until you said you got it from an accident. Is there some sort of test?
First, no question is silly. There are significant similarities between tinnitus caused by ES (love your Eagles Trojan reference ) & those caused by Meneiere’s. Here is the link to an excellent article about Meniere’s Disease that will answer most of your questions. Though the article doesn’t mention head injury as a potential cause of ES, I have read that info in several other places. I’ve had two significant head injuries from cycling - the first when I was 13 (no helmets back then) w/ a fractured skull & concussion but no Meniere’s resulting. The second was when I was 58 (wearing a helmet) w/ Meniere’s showing up about a month after the accident. The article linked below says Meniere’s most commonly shows up betw ages 40-60. I guess age was on my side after my first head injury but not my second one.
Forgot to say I totally agree that most doctors look at us like we’re possessed if we claim to have any knowledge about our bodies outside of what they know (or even equal to). It seems there are many doctors out there who have little information about the cranial nerves & their effects on the body for good or bad. We have learned so much on this forum because that’s a sensitive (tongue in cheek) issue for ES sufferers, & it’s necessary to understand which ones are affected & how that manifests via symptoms.
No doctors will say what symptoms are likely to improve with surgery, even the experienced ones will say wait & see.
We suggest Neurologists as a doctor potentially to see for ES as some members have been helped, but like all doctors, there are good & bad unfortunately. And usually they can help with medications for nerve pain, but clearly you drew the short straw!
Are you okay with the doctor who diagnosed you doing the surgery?
Yes. I have bilateral jugular compression by styloids against C1. Severe (80-90 percent) in flexion. Moderate in neutral head position. And I have severe tinnitus. Tinnitus started a few months after the other head symptoms got bad about 2.5 years ago. Am disabled by it.
Looking for surgeon who understands this and can help promptly.
I’m also glad you mentioned the vagus nerve. I had started tracking nerves as culprits because I read a journal that mentioned the vagus nerve as linked to ES. Also, many other symptoms I am experiencing are also linked to the Vagus nerve or one of the other cranial nerves. I brought it up to 3 doctors this past month and they brushed it off. I guess I don’t have a medical degree so I can’t possibly know what I am talking about (sarcasm) according to them. However, I will keep pushing. The doctor that diagnosed me was the only one that did not brush it off. However, I didn’t feel I had enough time to mention the other symptoms. He did say we will have to see what happens. He said he will only really be able to tell once he opened me up. He was not sure because of the extent of my vocal cord issue. Typically he has only known about mild voice issues but I am unable to speak and both my cords have stiffened. Only using false cords now for sound. Of all people, I mentioned it to my Neurologist and she acted like she had no idea what I was talking about. Let alone when I mentioned the Doctor diagnosed me with ES. If only you saw her face. It literally went blank. She just told me to wait and see after surgery and not follow up with her unless the surgeon referred me. Smh. Well we know if he does, I’m definitely not returning to her! I had brought it to her attention because I thought the listing of Doctors that diagnose ES, mentioned Neurology. I think I chose the wrong type of Neurologist.