Hi everyone. I know it has only been a few weeks since my last post, but I wanted to ask a question about posture. I think I mentioned in that post that my symptoms are very sensitive to the position of my head. Even slight deviations from what I consider neutral posture can bring on throat pain, tingling, foreign object sensation, etc.
About two weeks ago though I decided to take a leap and try to change my posture to maximize the distance between the styloid process and the first cervical vertebra. In effect this means thrusting my head forward and tipping my chin slightly upwards - all the time. Well, rather to my surprise, two weeks later my throat pain is WAY better, along with several other symptoms. It seems quite hard to believe that I can alleviate some symptoms in such a stupidly simple way, but there’s no doubt that it’s worked to some extent.
What I want to ask is whether anyone else has had partial success with postural changes, and if so what symptoms got better and which ones remained. For me it’s been mostly the throat symptoms that have gotten better (glossopharyngeal nerve pain, voice changes, tingling, etc.), while the symptoms localized in my head (headache, ear fullness, etc.) have not.
Of course I am enormously glad to have found a way to minimize some symptoms, but on the other hand I quite confused about what these developments mean in the grand scheme. I have some ideas but would be very glad to hear other people’s experiences and thoughts before leaping to my own wild theories.
Yes, no question that head posture will affect what you are feeling. It will vary greatly from person to person depending on anatomy, growth of styloid and structures impacted which makes it hard to pin down concretely. For myself, prior to the first styloidectomy, looking down caused decreased visual acuity (blurred vision) and headache, loss of voice, lump in throat, heaviness in upper chest to name a few symptoms. After the surgery many of these symptoms reduced for ~2 weeks and then kicked back up significantly. Now if my head deviates away from neutral in any way for more than a minute or two my symptoms are much worse and significantly affecting my IJV, carotid artery, vagus nerve and glossopharyngeal nerve on the remaining styloid side. This I relate to having more motion since the “crutch” or “training wheel” on the removed side is now gone.
For a long time now I have been using a rolled up hand towel in my pillow case on either side of my head as a bumper to stay closer to neutral. I could not tolerate the soft neck collar to sleep in, too much compression on my neck and jaw. I see my surgeon tomorrow to discuss removal of the remaining side tomorrow
The rub is holding your head with chin out and tipped up for long periods over time will affect other structures in your neck in a way that are not desirable. This is the first post of yours I have read so not sure if you have had surgery yet or not. Hope you find answers soon!
Thanks for your response @JustBreathe. I have not had surgery and have both been told and observed myself that my styloids are normal length, although the right styloid is quite close to the C1 vertebra. You are definitely right that I can’t go my whole life sticking my chin out and upwards without paying the price at some point. Honestly that’s the least of my concerns at present though.
My main question right now is this: if changing my posture all but eliminates symptoms but doesn’t affect others, can I reasonably attribute those other symptoms to ES? Especially given that the styloids are normal? Because when I adopt provocative postures, my symptoms look like classic ES plus a few of the more oddball symptoms, whereas when I stay out of provocative postures only the oddball symptoms remain. The question that I realize no one can reliably answer, but that seems to lie at the heart of my troubles, is whether these oddball symptoms could also be due to ES. On the one hand there are the normal styloids and the posture-independence of those symptoms, on the other hand there’s the indubitable fact that the styloid process and C1 are causing mischief at least some of the time in some postures.
Maybe sticking my chin up and out is taking just enough pressure off the nerves to let them settle down a bit (thus e.g. the eased glossopharyngeal nerve pain), but not enough to totally decompress them or the blood vessels, thus leaving the seemingly more vascular symptoms. But I can’t help thinking that I only want to believe this because I want to believe that everything is fixable with surgery… I should add that the oddball symptoms go back about ten years for me, whereas the more classic symptoms only started in January of this year.
I know I need to discuss all of this with a doctor and I’m working on finding one. I already talked to an ENT who took one look at the normal styloids and told me not to even think about ES.
Also, I think you have read my previous post, given that you responded to it in some detail!
Perhaps I should also elaborate on exactly what I mean by “oddball” symptoms:
Headaches and head rushes, triggered by bumpy car rides and impacts from my own footsteps
Pulstile tinnitus dependent on head position
Fullness in ears
Loss of sense of smell
Disgustingly loud neck crepitus, every sound in the book (one of the worst symptoms for me - I mean “disgusting” literally, it gives me this horrible nausea-like sensation in my whole neck and head)
Visual disturbances - floaters, sparks, visible pulse in eyes, intermittent double vision, night blindness, whole visual field is sort of “mottled”
Cognitive changes, impaired speech when the headaches are more severe
As I said, I know these all could be down to vascular ES, but given that they don’t improve when the more classic ES symptoms do, and that I had them way before the classic symptoms, is it really plausible that these symptoms too are caused by ES? I want to think so but I also don’t want to end up getting surgery based on false hope - to say nothing of finding a doctor willing to excise a normal-length styloid process.
Oh geeze, my brain is just not the same…ughh. I had to go back and finD our prior conversations - sorry to mess that up! A big trigger in my mind for you is the anosmia (loss of smell) - definitely not related to ES. The vast visual sx’s most likely come from another source as well, likely CSF leak. Impaired speech would be more related to intracranial vascular/brain stem. Looking for a solid neurosurgeon/ENT who is willing to do brain imaging MRA/MRV and seek out possible CSF leak would be high on my list if I were you. Your other sx’s could fall into the ES category but cross over with the leak which makes the differential diagnosis, well, difficult. I would also say it may be more of the width and angle of the proximal styloid vs the measurable “length” that is causing impact/stenosis at C1 tubercle. I have heard of one neurosurgeon who is working on research linking ES to CCI/chiari malformation…
Sorry again for my soft brain blunder!
I will add to what JustBreathe said re: ES. It’s not always the length of the styloids that determine if they will cause symptoms. There are people w/ normal length styloids who have ES sympotms because their styloids are very thick, angled, twisted &/or pointed. These physical features can definitely create problems w/o length. It’s also necessary to take a good look at the stylohyoid ligaments. If there is any amount of calcification on either one, it can impact the ability of the hyoid bone to move during breathing, speech & swallowing at the very least & can cause ES symptoms as well. Calcification of the s-h ligament tethers the ligament which can create all sorts of other problems.
The definition of Eagle Syndrome is 1) elongation of the styloid process(es) OR 2) calcification of the stylohyoid ligament(s) OR 3) a combination of #1 & 2.
You do have an interesting set of symptoms. I’m glad JustBreathe had some good recommendations for medical follow-up for you.
I don’t have answers for you- only to agree that angle is important too. Maybe your styloids are angled enough to compress blood vessels regardless of your head position, but moving it a bit eases the nerve issues. I’m the opposite of you; I had the more classic symptoms for a long time, but developed vascular symptoms later! Mine coincided with developing a bulging disc C5-C6, so I can only guess that it shifted things very slightly enough to compress both the jugular veins.
JustBreathe is the expert on CSF leaks, so will leave that to her. Have you had a CT with contrast? That would show if there are vascular issues- as you get these regardless of head position hopefully it would show?
Unfortunately no-one can really tell what symptoms are going to be resolved with surgery, & at times what symptoms are ES.
Good luck with your search…
Thanks for the replies everyone. I’ve had a good deal of testing and attempted treatment for CSF leaks, none of which helped or showed anything conclusive. For complicated and very stupid reasons, I have had a CT venogram of the head but not the neck. Throw in some MRIs and everything is decidedly inconclusive. Borderline normal styloid length, borderline brain slump, borderline low clivo-axial angle, borderline jugular stenosis (“within normal limits”), borderline pituitary enlargement, “questionable” CSF leak in the thoracic spine, questionable fluid collection in the right maxillary sinus. Some symptoms of low CSF pressure, some symptoms of high pressure. Every time a doctor tries to definitely rule something out or confirm something, the testing is ambiguous. This has gotten tiresome.
The only thing beyond doubt is that when I look down or pull my head back over my shoulders, the styloid compresses the glossopharyngeal nerve. Even my neurologist agrees with that literal common sense. Now, could there be blood-vessel compression even in alleviating postures? I suppose so, but this begins to feel like a wild goose chase…
Obviously I have a lot to investigate. I will keep everyone posted with updates as far as they are relevant to ES.
Here’s some food for thought:
Has anyone taken a look to see if you have calcified stylohyoid ligaments? Sometimes there gets to be so much focus on the styloid process that a significant ligament calcification is missed. That can cause problems equal to elongated, angled, thick, twisted, broken or very pointed styloids. I would also suggest that we’re each “made” differently. Just because your styloids seem to be near normal length doesn’t mean that they aren’t causing you a problem. The issue is that you won’t be able to determine if the stylolid(s) is/are at fault w/o having one/both removed (though lidocaine/steroid neck injections can sometimes be predictive).
Have you tried getting second opinions on any of the testing you’ve had done? Sometimes a second doctor will see something missed by the first one.
No doctor that I have seen has said anything about the stylohyoid ligaments. I am looking at my own CT scan right now though and, while obviously I am not a doctor, I see nothing in the area of the stylohyoid ligament. (Would you happen to know whether calcified ligaments show up on a typical CT scan?)
I definitely believe that the styloids are causing a problem - the question is exactly when and to what extent. You are quite right that the only definitive way to find out is to carve up the styloids, which I really hesitate to do without a higher degree of certainty that they’re causing more than just the throat pain. Because with postural changes the throat pain is pretty well under control now.
I’ve gotten several opinions on most of the imaging. I don’t have any imaging that clearly shows the jugulars as they pass between the styloid process and C1. Getting that imaging is one of my next steps.
Good job getting multiple opinions. I’m sure you’ve read on the forum that if you get a scan done looking for vascular compression, you must make sure your head is in a provocative position during the scan, or it’s likely nothing notable will be seen.
It is possible your C1 or C2 vertebrae have abnormally long or wide transverse processes &/or one or the other is a bit rotated. Those can be problems as well.
The angle & width of the styloids can cause symptoms too, so don’t know if that might be an issue? As Isaiah says, the C1 processes can be long enough to narrow that gap between them & the styloids & can pinch structures inbetween. So good plan to get that looked at.
One other idea to chew on. Having a vascular surgeon image the IJV with Doppler US in your provocative positions can be very eye opening as well (thanks Jules Normal velocity of the IJV is 0-5 cm/s. It can be measured just proximal to the clavicle, mid cervical spine (looking for muscular entrapment) or proximal between the mandible and C1 (harder to image unless they use a very small sound head). There is some dispute in reliability as the tech can push too had and thus induce a false positive so choose your sononographer wisely. In my most provocative position the velocity on my remaining side styloid is 42cm/s…in neutral it is a sluggish ~5cm/s. Positioning is EVERYTHING.
Sorry for your long rabbit hole ride. You definitely have something affecting your intracranial pressure//brain. Keep up the good fight.
I definitely had a lot of postural symptoms and would have lessening of problems when I moved less, kept my head straight, stayed out of bumpy cars, walked more slowly etc. In my case, the various types of symptoms would come and go, and they were pretty much all from ES whether or not they went away fully with rigid posture. I also had more migraines with my ES symptoms, and some of what you are describing (visual changes, speech difficulty) are common in migraine. I would definitely check with a doctor though as there can certainly be other causes of these symptoms other than migraine. My styloid was thickened but not elongated on the side that was causing my symptoms and surgery led to a remarkable improvement.
Hi, I am brand new. I have been undiagnosed for over three years, I finally insisted a radiologist look at my 360 CT scans - and yes, I have 4cm styloid process with calcification, possibility pushing against my carotid siphons.
In answer to your question- I can tell you that posture has helped me incredibly. At home, I wear a loose neck brace that is not thick enough to actually support my neck. It is a reminder to sit up straight. My PT told me to work on my core muscles to help. (After 3 years, I have lost all muscle).
I have a very tight SCM. Anyhow, thumbs up for posture, at least pre surgery.
Hi! Thank you. I am still trying to figure out the forum . I am looking for a doctor/surgeon. I had an ENT send a referral today to Neal D. Futran, M.D., DMD. I brought her my scan on DVD and the radiologist report. Whoever read it has a PhD, I’m not sure if all radiologists do.
I just met the ENT today. She palpitated my tonsils but didn’t feel anything. She seemed skeptical. I’m not sure where I should post this, I don’t want to hijack the thread.
(I have been trying to find a thread with people’s stories prior to diagnosis, any ideas?)
You can start your own topic by clicking on the gray box above that says “General Discussion” when the main page comes up there is a link on the right side down a bit from the top that says “+New Topic”. If you click on that you will get a page where you can start your own discussion. If when you click on the General Discussion page you get two columns one w/ a title of “Popular” & the other “Recent”, scroll to the bottom of either column & click “more”. That will take you to the General Discussion page where you will find the “+New Topic” link. People usually start their own discussion when sharing their ES symptoms &/or journeys.
Your ENT experience doesn’t sound very positive so far. There have been several people from WA on this forum & all that I know of except one have traveled out of state for surgery. Several came to CA to see Dr. Samji who is one of the most experienced ES surgeons in the US. Helenee is the forum member who had surgery in WA (Seattle area), but I don’t recall that she gave us the name of her surgeon. You can privately email her to ask who did her surgery & how the outcome has been. Her first surgery was 8/26.
Many Dr are skeptical and hesitant on Eagles. My ENT told me he ? It and had quit doing the surgery about 10 yr ago. He said he had about a 50% success rate. After he explained what he did. I said, “ I’m sorry, but what you did is the surgery they warn us against.”
He kinda chuckled and asked me to call his NP and report after my surgery. We tactfully agreed there really isn’t an amazing Surgeon for this in KC Area. Hang in there, this group is wonderful.
Good for you, telling him that glad he took it okay! And hopefully when you get back to him to let him know how your surgery has gone then he might be less sceptical , although best he doesn’t start doing surgery again