Does anyone else experience a weird type of dizziness as if you are rocking, or feeling like you are on a boat? I initially only had this dizziness after I would move then once my position stabilized the dizziness subsided. It has gotten so much worse (along with many other symptoms) to the point where I’m constantly feeling like I’m swaying/rocking but I’m really not. About a month ago I had a course of steroids and my dizziness was gone for about 2.5 weeks and has since returned. I have been getting massages, seeing a chiropractor, and seeing a physical therapist for treatment of cervicogenic dizziness without much relief for months now. My chiropractor suspected it may be ES and referred me to get further testing and it does look like my styloid is elongated based on a panoramic view I took at the dentist. Wondering if anyone else has/had this type of dizziness and if its associated with ES?
I had a constant off balance feeling, like being drunk, as well as the horrible whole room moving about dizziness as I had vascular ES, but not rocking. I also had some weird feelings like feeling shorter than I am & closer to the floor, & also feelings of falling, like going down quickly in a lift. So it can cause weird symptoms & we’re all different!
Mine was because the jugular veins were compressed bilaterally raising the pressure inside the brain, but it can also be caused by compression of the carotid arteries. It can also be caused by irritation of the nerves to the ear.
Personally I’d be wary of having any more chiropractic treatment as this could make things worse.
What do you plan to do next, have you seen the doctors on our list in the Doctors Info Section? Will you be looking to get a referral to someone?
I have bilateral jugular vein compression. I had surgery in 2014 on the right (worst) side. I am having symptoms again, which includes being dizzy, but not the room spinning kind, more of being on a boat like you described. I saw the neurosurgeon last week, he said the side I had surgery on is compressed again, likely from scar tissue as a result of the surgery. I am going in Friday to have a cerebral venogram, and if it looks like it might help, an angioplasty to try to expand the jugular compressed from the scar tissue. If that doesn’t work, the neurosurgeon will do a styloidectomy on my left side. In addition to my dizziness, I have a 24/7 headache, queasiness and I am unable to walk heel to toe, which I found out during my neuro evaluation.
Hi Susie,
I’m sorry to read that similar symptoms have returned. Feeling lousy all the time is just no fun!
Just as our bodies can lay down too much calcium in places it’s not needed (cough, cough - ES 
)…so it can get crazy w/ scar tissue in patching us up after an injury. I hope that’s the easy explanation for the return of your symptoms.
If you have bilateral ES getting the other side removed should help with any additional symptoms you now have. It’s not uncommon in bilateral cases for the second side to eventually flare up after the first is removed.
Please let us know what you learn on Friday. We’re here for you!
I am glad to know that someone else understands what I am going through.
I have looked through the doctors on the list starting with the ones that are close to me. I live in Illinois, in the suburbs of Chicago. I called one physician on the list but I was not able to directly reach anyone as the message states all referrals must be faxed and they will reach out to the patient after the referral is reviewed. I asked my dentist to write me a referral and he doesn’t know much about eagle syndrome so the office still needs to get back to me. (I did my panoramic X-ray at the dentist and he stated the styloid process is elongated but doesn’t know what to do with that information.). As I mentioned earlier, my chiropractor was the one who suspected eagle syndrome initially and he has referred me to get the panoramic x-ray, mri, and ct scan but at this point it is getting out of his scope of practice as to confirming a diagnosis.
I read somewhere that some of the physicians on the list do consults online. Do any of you have any more information as to going about setting up the consult?
Some days I feel like I’m at a complete loss with this. I had a course of steroids a few months ago and I felt like a million bucks. My dizziness and tinnitus subsided for a few weeks but now its back. It’s affecting my work and becoming a big problem. I don’t know if I should make an apt to see my primary in the meantime to get some relief.
Please let me know if you have information about setting up an online consult or any suggestions on getting appointments with the correct physicians in IL.
Thanks!
Dr Cognetti in PA & Dr Samji in CA both do phone consults. There’s info about what Dr Samji needs in this discussion:
1. Dr. Samji does his own measurements BUT the report showing the exact length of both styloids is a must (The radiologist is the person whom measures these, not the MD) before he see’s you. So this will be needed to continue care here.
2. No, Dr. Samji wouldn’t need to speak to them, the radiologist will know exactly what a CT neck NON-contrast styloid protocol is, its universal. Plus, you are not an established patient until after your first visit so we would not be able to discuss any of your history/scans etc without first becoming established with Camino ENT. That’s a HIPPA law.
Hopefully this helps with an hiccups
step one: send disk and scan report with both styloid lengths to our office, then schedule a new patient “eagles visit”. Make sure to specify eagles when you book as it gives you more time with the doctor.
It was from a discussion titled ‘CT Neck non-contrast styloid protocol’
Not sure what Dr Cognetti needs, but there’s contact details for both doctors in the latest doctors list:
https://forum.livingwitheagle.org/t/us-doctors-familiar-with-es-2019/4752/23
I think most members have been referred by a doctor, but I think some have referred themselves; ring the offices & check? And presumably keep trying with the Chicago doctors. Obviously difficult for you being diagnosed through a chiropractor. I’m UK, so we have a different system here, hopefully others will chip in with more info! Good luck, hope you get somewhere soon…
Hi Gquiros -
I can tell you that the quickest way to get a response from Dr. Samji’s office is to email his medical assistant - lauren@caminoent.com. His phone consults are 45 min. & I’m not sure of the cost. He will need to have a copy of your CT scan & the radiology report in hand before an appointment will be scheduled. He makes ES cases a priority in his practice so you should be able to get an appt. fairly quickly.
Dr. Cognetti makes ES cases less of a priority so ES appointments are usually booked out a ways. He will want the same things as Dr. Samji before an appointment is booked. I also don’t know what he charges for a phone/video consult or how long he allots for one.
It would be useful for you to click on the gray magnifying glass icon & type the IL doctors’ names in one by one to see what has been posted about each one. Some very good doctors have inefficient appointment booking practices which means you need to either follow their scheduling protocol or move on to another doctor. I agree with you - I want to hear a live human voice at the other end of the phone when I call a doctors’ office. A recorded message would put me off as well.
Procedure went okay. They did the angioplasty, but the doctor didn’t think it was likely to help. He figured it wouldn’t hurt, so might as well try. He didn’t seem to think it was scar tissue from my styloidectomy causing the compression, since in neutral position my jugular was open. I think all my neutral pressures were about 7. I don’t remember the others, but I think they ranged from 9 up to 23, depending on where they were measuring and my head position. They were very thorough, they measured each location in neutral, left and right, extension, extension with head turned to the left and then right, and in flexion, and flexion with head turned to the left and then right. It took a couple hours for the procedure. During recovery, just as I was about to get ready to go home, both my eyelids closed involuntarily. I was afraid they wouldn’t let me go because of that, but fortunately it didn’t last too long. I was able to convince the nurse it happens a lot (every few days lately) so it wasn’t a big deal, so she let me go after they reopened. I see the neurosurgeon on the 6th, so I should be able to get the report from today and probably decide to proceed with surgery on my other side. Maybe he will have an alternative suggestion on why my right side is compressed during certain positions, if it’s not scar tissue from my styloidectomy.
Glad that the procedure went okay, will be interesting to get the full report. Strange about your eyes closing! Maybe the neurologist will have some answers about that?
The neurologist was totally dismissive of it. She works in a headache clinic and pretty much just deals with migraines. My eyelids closing doesn’t fit into that diagnosis. I think when I mentioned it, she said something to the effect of I have never heard of that… When I mentioned it to Dr Nakaji, he nodded his head like he understood it as being a possible symptom of Eagles. If I remember, I will mention to him when I see him next week that it is now happening every few days.
Hi Susie,
I’m also glad the angioplasty went well & hope it helps a lot & that all goes as well w/ the second side. It sounds like your doctor was amazingly detailed & thorough in checking the many positions that the jugular compression could occur in. That is fantastic!
The seventh cranial nerve - the facial nerve - is the one that stimulates eye opening & closing. It is one of the cranial nerves often affected by ES, & the eye closing could be a symptom if your styloid(s) have some regrowth. It isn’t a typical symptom of ES but certainly could be a symptom if the facial nerve is being irritated. Dr. Nakaji or your neurologist might be interested in taking a look at that. Have you had another CT scan to look at your styloids to see if they’ve regrown at all?
In 2013 I had a CT that included neutral, flexion and extension positions. The radiologist report from that only mentioned compression in the flexion position on both sides. The neurosurgeon reviewed the imaging, not just the report, for the CT as well as some other imaging tests. The neurosurgeon said in addition to what the radiologist mentioned, I had near total occlusion on the left side (the side I have not yet had surgery on) in extension position. I had a CT recently, but unfortunately they would only do it in the neutral position. The radiologist report said there was no compression. But the neurosurgeon reviewed the imaging and showed me where the jugular is compressed on the left side between the styloid and C1. He also said there was a narrowing on the right side, which he thought was likely from scar tissue from my styloidectomy on that side, but my cerebral venogram apparently didn’t show anything indicating scar tissue. I go back on the 13th to see the neurosurgeon, so hopefully he will interpret the venogram pressure numbers for me.
Hi Susie,
Sounds like you need to get that left styloid removed sometime in the not too distant future. Some people w/ bilateral ES are able to get away w/ having only one styloid removed, but the majority have to have both done in order to be “cured” of ES. The remaining side can even create symptoms that affect the side already removed as there is an imbalance left when only one elongated styloid remains. It would be worthwhile looking into your next ES surgery as well because it will likely take care of the left sided jugular compression.
For me, i just woke up one day and i was just like you. Felt confused and drunk. I went to ents and they said it must be from an ear infection i had, but i had vestibulars tests done and even did therapy for vertigo and it didnt help.
When im trying to sit or stand still i feel like im swaying from side to side. No one undersntds why this is happening but i believe its from the eagles.
My ears always hurts especially when i swallow. Do you have any current ear problems? Because i believed it was from maybe vestibular nerve damage
I went to an ent a few months ago, was there 5 minutes and he referred me to “the dizzy doctor”, literally goes by this name. I have an appointment with him in March. Went to a different ent last week and told him all my symptoms and he focused on me saying “it feels like something is in my throat” and he prescribed me omeprazole.
He told me that ES wouldn’t cause dizziness. He wanted me to do further testing to check my middle ear. I had testing done last year on my ears (not as extensive as he wants) so I had to schedule the testing for later this month. I will schedule a phone consult with the expert and hopefully get some answers not just “oh you have acid reflux.”
Sooo frustrating, & having to go through so many hoops of more tests to ‘prove’ it is ES…when you go back for the results, I’d print out & take a couple of the research papers which mention ES & your symptoms, it could be vascular ES, which definitely does cause dizziness.
Swaying sensations & dizziness are definitely possible symptoms of vascular ES. Any doctor that knows about ES & denies that is not truly knowledgeable about ES.
Hi Gquiros ~
As Jules said, dizziness is an ES symptom if vascular compression is involved. Unfortunately, too many doctors that are familiar w/ ES have their own personal opinions about what symptoms go along w/ it. If you have symptoms outside those boundaries, they will either claim you don’t have ES or the symptoms aren’t caused by ES. A truly informed doctor will know that ES symptoms come from irritated cranial nerves &/or vascular constriction. They will have some level of understanding that irritated cranial nerves can cause bizarre & far reaching symptoms & pain.
I’m sorry the ENT you saw was ignorant of those facts. Omeprazole won’t do a thing for you if you don’t have acid reflux & can goof up your gut by making your natural digestive acid drop too low. Many ES patients are Rxed meds for acid reflux because they have stomach issues. These come from the vagus nerve being irritated by elongated styloids but this again shows a lack of understanding/knowledge on the part of the prescribing doctor.
I hope you get that phone consult w/ the expert doctor (Samji or Cognetti?) soon!