Hi everyone my name is Beth.I have been having weird symptoms for about 3 yrs.fullnes in left ear, swallowing issues,tapping behind left eardrum,vertigo.fatique,neck weakness, extreme anxiety and the list goes on .I have been to ENT a few times nothing wrong im told,Had sinus CT, MRI brain with and W/O contrast, MRI cervical spine,angiogram head and neck, cardiologist, functional neurologist,you name it.all say all is well.I recently saw a neurosurgeon and he said my styloid were long left more than right.He said no impingement on carotid artery ot jugular.He does not recommend surgery.I read many people with ES get this new procedure at Epic clinic.Its soundwave Atlas allignment.They corrected my atlas 75% which I understand is huge. I have a racing heartbeat that would just go up when I was resting to 136 or more and go back down to like 65. This procedure corrected that so far and i feel so much better.still have vertigo a little.The Dr there said my atlas could have been rubbing on vessels and nerves. I was wondering if anyone else ever heard of this? And did you ever hear of anyone not needing surgery for elongated styloid? I don’t know where to begin any help would be appreciated. I hope that you are all doing well. I have read many stories here. My heart goes out to you all
And welcome to the forum. I am new here as well. But wanted to give you a little feedback regarding your question. I do have a rotated, atlas, and it, and or the styloid or both have been causing me problems for a long time. You’ll find most on here have been through a ridiculous number of doctors and lack of definitive diagnosis. My atlas prefers to stay to the left… But with self traction, I can sometimes get it back.
I am in the process of trying to understand what is what… And without having a scan that shows my nerves next to my styloid, I’m a bit at a loss to know which or both are causing my problems. It’s not particularly long, but it does come down to the edge of transverse process of C1 and it is quite close certainly when C1 is rotated.
Have you had a dental panoramic x-ray? That is where I found mine. And it was quite easy to see the distance between the styloid and C1 as well as the length, size, and orientation of the styloid. This one is easy to get in much less expensive than a CT scan. So I would suggest starting there. And FYI my styloid is only on the left which is where C1 Is rotated towards… Wondering about a connection between the two. As well, I had whiplash. As many others have, and there’s a potential relationship between that as well.
I don’t know anything about epic sound wave… But that is interesting and I will look it up. It would be fantastic if Atlas correction would solve your problem.
Rereading your note above, and the angiogram may or may not have ruled out vascular involvement… I’ve not had that done yet.
If you have any images, you can post, that will help us give you better feedback.
I’ve not heard of the soundwave atlas alignment, interesting that you feel that it’s helped you! We’ve got quite a few members on here with CCI & elongated styoids; it’s difficult to tell what’s causing exactly what issues when you have complicated medical conditions- at a guess it sounds like maybe your atlas was compressing nerves between it & the styloid & that shift has been enough to stop compression? Sometimes compression of blood vessels can be when the head’s in a certain position, so if a CT with contrast (have you had that done?) is done with the head in the neutral position it may not show compression anyway…
If you’ve not already read the section on ES symptoms & possible explanations in the Newbies Guide Section you might find that interesting to read about the different nerves which can be affected & what symptoms that causes.
Generally on here most members find that they do need surgery, and generally it is successful, but when people have more than one condition it doesn’t always solve all their symptoms…
Welcome @Ebgirl! Thank you for sharing your story. I also haven’t heard of soundwave therapy for adjusting the cervical or other parts of the spine. Sounds like a great non-invasive approach. It’s good news that the C-1 adjustment has mad a positive difference by reducing some of your symptoms.
Racing heart, as you described, can be caused by your vagus nerve being irritated. Quite a number of our members have had heart &/or blood pressure symptoms of some sort that went away after their styloid(s) were removed. I can also imagine that your rotated C-1 vertebra could have been pressing or rubbing on your vagus nerve which caused the heart symptoms. The vagus nerve also can cause anxiety, & fatigue.
I’m interested to know if the C-1 adjustment relieved the tapping in your inner ear (this is not a typical ES symptom). I was just diagnosed w/ MEM - Middle Ear Myoclonus (clicking in my inner ear) which can be caused by either the tensor tympani or stapedius muscle involuntarily contracting (like an eye twitch) in the inner ear. My ENT said it was caused by my TMJ, but I’ve had TMJ since I was a child & have had no recent change in symptoms thus I am dubious of that being the cause.
It would be amazing if the Epic soundwave adjustment keeps your ES symptoms at bay, but as Jules noted, most often people find their ES symptoms become unmanageable & surgery is the only recourse for recovery from them.
Wow ok my ENT said MEM is usually caused by anxiety or can be a spasm exactly like eye twitching.Since i had the soundwave adjustment i have only one episode of twitchy. I told the doctor on my follow-up appointment and he said it would probably go away. It’s been 3 weeks now and I haven’t had it since. I know how annoying that can be that was one of my worst symptoms. A constant tapping on my ear drum. It was disrupting my entire life. I also have probably more than 50% less fullness on that side of my head in my ear. The doctor at epic said he has treated many people with eagle syndrome. It’s definitely worth a try. Yeah I did it I can actually function again. The tapping would scare me so much I thought it was the carotid artery but the cardiologist said no and so did the neurosurgeon. I had such anxiety with the tapping and before I had the atlas done with the sound wave technology… immediately afterwards I felt a sense of calm it was very quick and painless. But they are very careful and do a lot of measurements and a specific x-rays before the actual adjustment. He said that it was probably laying on my vagus nerve like you said. Thank you so much for responding.
Interesting that your tapping went away after the adjustment. I bet that’s a huge relief!
I have Meniere’s Disease in the ear where the clicking just started. My click is intermittent & pretty quiet so not too bothersome. I’ve joked that a rhythm section has been added to the tinnitus symphony that constantly plays in that ear.
I hope your C-1 vertebra stays put in its new position & that your ES symptoms continue to decline. It would be really amazing if you could manage symptoms w/o surgery!!
I also had whiplash many yrs ago .Thank you for the suggestions.The neurosurgeon said my left styloid was longer than the right.Mine is all left sided but the Atlas soundwave correction definitely helped my ear tapping ,fullness in left ear and vertigo.
Yes i did have CT and MRI with and without contrast.I only had it lying down though. Thank you for this suggestions. I’m just getting to know the website still trying to figure this out. I don’t know how to post my scans I have all the discs. I guess I will try and figure that one out. Oh I also had where I couldn’t talk very much before the atlas procedure. I couldn’t talk because it would irritate the left side and cause a lot of discomfort also when I would chew but not pain necessarily. Most of the symptoms I get are autonomic.
It really it really would be amazing. But I have you guys now and I have all the information I need on this platform to get the help that I need I took note of all the doctors and I’m just studying up on everything. I’m very grateful for this platform. It’s just so hard to live with him no one understands it that well. So you tend to feel all alone or question your sanity LOL. I still have the tinnitus in the office here but I’m hoping that will diminish over time. I had to wear and it work with white noise for a long time now to drowned out the ringing. I have noticed now that I don’t have to wear it as much. I’m just thinking that it helps me and maybe it can help with some of the symptoms for others. I am just so grateful for any relief. This is the first time in years that I’ve had any relief I’m actually amazed.
Regarding your C1… I connected some dots this week after my CT scan. I’ve had problems with my left side, my shoulder is dysfunctional and weak, same with left arm, and you know all the things that come along with a bad neck (and now the stalactite!).
The CT went down to the top of my shoulders, and I could see that my left shoulder was lower than my right, and then looked at the levator scapula, which I have been targeting as part of my problem with C1, but didn’t have this very clear picture of the differences in my shoulder blades…The levator scapular attaches to C1 through 4 and down to the top of the scapula.
So, I ‘think’ my levator scapula is stretched past what it can do, and or has not been getting good nerve signals and it is pulling on my C1 which is also depressed. Yesterday and today I have specifically lifted up that shoulder and I have significantly less pressure on the left.
I was also headed into the direction of learning how to stabilize C1 via exercises by MSK neurology. I don’t know if mine has gone on so long that it is not possible but I met with Kjetil Larsen this week and we’ll meet again next week to pick his brain about how I can help myself. Not sure how this may or may not connect with the styloid (as my left side is a mess) but it was a bit of a huge revelation and gives me something to work on.
Quite the puzzle to unravel!! I felt like I had a fork in my neck and felt like my arm was attached to my neck. Grateful beyond words for this forum!
I’ve had this feeling in my right arm, (the side where my 6cm styloid was know resected). I’m working on fixing it, including retraining the arm.
A lot of good visual 3D resources are on this YouTube channel https://m.youtube.com/@3danatomylyon904
They show how the healthy body is supposed to move at various joints/parts.
Some of the shoulder movements are showed here:
Thank you!! I have a lot of work to do… but have hope ))
Wow these are great .I also have the left shoulder problem.runs straight up my neck Much better now since Atlas correction.Very intery
@Ebgirl - if you have folders for your CT & MRI on your computer desk top, you can select files from each folder to upload here using the underlined up arrow icon at the top of the text box where you type your next post.
Since some of us here aren’t good at reading slices, many members have used RadiAnt Viewer or other 3D slicer software to convert their CTs into 3D. I assume this also works for MRIs but I’m not certain.
Here’s a link to an older post describing how to do the conversion:
Please let me know if there is anything about my journey that I can help you with. I find this group a refreshing answer to some many hopeless nights. Thank you all!!!
When i went to epic clinic yesterday.I told Dr. my MEM seems to have almost disappeared.He daid it probably want MEM . The doctor said it could have been or could be the sternocleidomastoid which runs right up to the back of your ear. I could have been having spasms because I noticed they got a lot less and then pretty much disappeared. Because of the adjustment and every aligning of the C1 in the precise manner that they do it. I was pretty much relieved of that and it was one of my most horrible symptoms. It was just non-stop random tapping. It lessened a lot and then I had one big spasm and then it pretty much went away. If I sleep wrong or have any neck soreness or anything I noticed it’s there but it’s sounds further away . It’s mostly non-existent now.
That’s really good news, @Ebgirl! Interesting about the SCM. I’m currently going to PT for a shoulder issue, & this week the PT mentioned my SCMs are really tight. She did a bit of massage on them, & now that you mention it, I think I’ve had less clicking than previously. It’s still there, but it’s not too annoying because it’s pretty quiet. Maybe I’ll get to work on my SCMs & see if I can get the MEM to go away like yours did! Thanks for sharing your experience!!
Based on this comment, I looked up the muscle that innervates the stapedius muscle & was both surprised & excited to see it’s the facial muscle - the same muscle that causes eye twitching. During the course of my MEM stapdius twitch (left ear), I’ve had a chronic muscle twitch under my left eye. I noticed yesterday that the clicking in my ear has quit. I’ll be interested to see if the eye twitch follows suit.
The bigger news here is that an elongated styloid can cause irritation to the facial nerve so it’s possible that your elongated styloid(s) are contributing to symptoms caused by the facial nerve.