I also have distortion of size and distance especially being compressed or shorter. Sometimes I feel like I am either moving faster than things around me or I am still in motion when I know I have stopped. This is so weird when I am in my car or in an elevator.
That sounds horrible too…
Yes, it is, but like many other symptoms I incorporated it into my life. I think it goes with the ear pressure and hearing loss.
eagleandchild & DeeG - Interesting symptoms. They do sound like they’re coming from the inner ear. As with so many ES symptoms, they’re probably initiated by an irritated cranial nerve. The 8th cranial nerve - the vestibularcochlear helps control equilibrium & hearing. Though it’s not one typically irritated by ES, and because we’re each arranged a bit differently inside, there is a chance it could be irritated by ES.
The feeling short & strange symptoms like that are often mentioned on forums by people with Intracranial Hypertension…the motion symptoms could be more down to nerves in the ear, hadn’t thought of that!
Just speculating here but it makes sense that intracranial hypertension could put pressure on nerves that could cause some crazy symptoms like the ones you both have experienced. The affected nerves would be irritated by brain pressure as opposed to irritation caused by the styloids themselves.
I feel that way and often like my head is being pulled towards the floor
I have been on the fence about my second surgery, that is until my recent flare-up - now with a head cold added in for fun. 
The lull period was nice while it lasted. This latest flare-up reminds me of why I had surgery in the first place.
The left side, now removed, caused dizziness, cheek and ear pain, as well as the usual poking/hard to swallow pain. The right side remaining seems to be causing different issues, but I am no longer dizzy and the cheek/ear pain is gone. (yay for something.) I’ve been going to PT for the last two months to help with tight neck and shoulder muscles on the right side. The tight muscle knots are gone, but I still have nerve pain in my shoulder, up the side of my neck and up to the top of my right eye. My right eye also twitches.
The nerve related pain and issues are ALWAYS better in the morning. I think being relatively still during the night gives my body time to recover from nerve disturbances that happen throughout the day, though a restful night does not decrease the poking throat/difficulty swallowing pain. By the end of the night my right eye pain is sometimes so bad that the only remedy is to close my eyes and go to sleep.
For the most part, all of the issues I had on the left are gone, well, gone until this flare-up, which caused my left ear to pulsate and ring again. I am encourage by the fact that these symptoms where gone for a period and will likely abate again at some point. The painful and knotty scar tissue is reducing in size but it hurts more with this flare-up.
I am currently on the schedule for surgery with Dr. C. in Philly in February. He only does ES surgeries on the first Friday of each month. I wanted to do surgery in January after the holidays, but he will be away. In the interim, I am working on getting appointment with Dr. Delacore in NYC. Someone on this site posted recently they has external surgery with him so I thought it would be worth looking into. Though I would do the surgery with Dr. C. again, I would love to stay local.
Thank to you all for listening. Any input is always welcome.
Peace,
Teresa
I still get a bit of a flare up if I have a cold or another virus, even 5 years after surgery! It does keep you grounded, reminds me how lucky I’ve been to have symptoms go…every cloud & all that!
Personally, if it was me I’d be tempted to stick with the surgeon you know even if it’s a bit longer wait & travelling…hopefully someone will chip in if they’ve seen Dr Delacore & let you know what he (?) is like!
2 Likes
I’m sorry your symptoms are flaring & having a cold to boot is no fun. I’m glad you have your second surgery scheduled & do think a meeting w/ Dr. Delacore is worthwhile. Since you know what to expect from Dr. Cognetti, you’ll have a guideline for measuring what you hear from Dr. Delacore. Please let us know what you learn if you do have an appt w/ him.
In the meantime, I’ll be praying for you!
1 Like
Hi! I like the idea of local too. Simple. A change would be a little gamble. You know Dr C did a good job. A lot to think about. Meeting the new doc will most likely give you that “gut” feeling.
2 Likes
Hi Sew Momma! Nice to hear from you. How are you? I hope you post surgical symptoms are easing.
My gut sent me away from one surgeon when I went with Dr. C. Now with one surgery under my belt, I certainly have a better understanding of what to expect and trust that my gut will continue to be a big factor.
Sending hugs.
BG
1 Like
Sadly my stomach continues to be a big factor 
1 Like
I have the twitching of the eye and feeling something is in my eye all of the time and the pain sometimes, but it really doesn’t relate to time of day. Really hope it resolves soon for you!
1 Like
You are a seasoned patient!
I’m doing great - about the same, maybe a tad better. All I have left is this occasional “crack” sound when I swallow. Not every swallow. Waiting on more improvements. I do believe it will continue to settle. Eating fine and sleeping without a problem.
2 Likes
Yes, I do. I’m not diagnosed but trying to sort out what is what. It’s like I have food allergies but I don’t. So confusing!
agb -
I just read through your bio & want to affirm that the hard masses you feel under your earlobes & behind your jaw could be your styloid processes. I felt that on one side but not the other. My left side could be felt under my jaw, but the right was under my ear. Your symptoms sound very typical of ES, & the off balance feeling, head pain & ear pressure could be coming from vascular compression by your styloids. Anxiety & throat issues as well as gastrointestinal problems can be caused by an irritated vagus nerve. Six of our 12 cranial nerves can possibly be irritated by ES & thus produce a wide array of symptoms which don’t point to any particular diagnosis. Having the styloids &/or calcified stylohyoid ligaments removed stops the cranial nerve irritation & vascular impingement & thus allows the crazy symptoms to abate. Many doctors are not aware of the role the cranial nerves play in causing ES symptoms & thus are dismissive of the pain & other problems even to the point of making an ES patient feel like a hypochondriac.
Please let us know what you learned from your ENT appt.
A CT scan of the neck from hyoid bone to skull base is the best diagnostic tool for ES. If contrast is added & the scan is done when the head is in a provocative position for vascular symptoms, then the particular vascular tissues being compressed by the styloid or calcified s-h ligament can be diagnosed as well.
Here is a link to our ES Doctors List for the US. Dr. Cognetti is one of the most experienced ES doctors close to you though there are others who are very qualified as well.
https://forum.livingwitheagle.org/t/us-doctors-familiar-with-es-2019/4752
Dear Isaiah-
Thank you so much for your response. I have felt these hard knots for about four (?) or so years and never knew what they were. I have had doctors feel them and say they were nodes but they would only check them when I was sick so I guess they assumed it was from being ill? I’ve had so many other strange and undiagnosed symptoms for a few years and felt either ignored or treated like I was a hypochondriac. I’m hoping I’ve found the culprit but I’m also very nervous and worried about it as I also have health anxiety. I think not knowing what is wrong has made me suspect all kinds of horrible things.
Thank you again for being so thorough and kind with your response. I will heed your advice and ask for the CT scan if my ENT agrees. I’ll update you with my progress. Take good care -
agb
1 Like
Thanks DeeG!
Hello @BrooklynGirl,
So sorry to hear the remains side is causing a ruckus.
I have been thinking about why the remaining side does this so often and this is what I have landed on. Elongated styloids on both sides act like training wheels for our spine, extra support albeit not necessarily appreciated. After one side is removed it is like taking one training wheel away and there is a subtle but real shift in the axis point from which we move our head/neck and in how the muscles have to work (especially if the ligament is calcified to the hyoid or the styloid has attached itself to the mandible via the stylomandibular ligament; also if the styloid is impacting the tubercle of the C1 vertebrae).
The styloid removed side muscles have to get stronger as they were protected for so long, and the remaining side muscles now have a tweak in their responsibilities. All of this, of course, can high light any nerve (vagus, glossopharyngeal, etc) or vascular compression on the remaining side and cause us continued grief.
Just my musing anyways…absolutely no proof to substantiate this.
I hope you can have the remaining side out soon and move on! Hang in there!
5 Likes