New here - Trying to figure out if i have Eagles Syndrome

Hi Everyone,

I was hoping if anyone could give me an idea if my symptoms sound like eagles syndrome.

5yrs ago i kneed myself in my face and broke my nose, a few months after that i started getting a pressure feeling in my head and feeling like i was spaced out, i also used to get heart palps which i did notice more when i moved my head. Drs did all blood tests like thyroid, vitimains etc and Infammatory and all came back clear accept low folate, iron and vit d. Those are sorted now. The rest were clear and have been in further tests. Drs thought sinuses and ENT gave me septoplasty although he didnt think i needed one, operation wasnt successful in any change to symptoms and they left my nose a wreck. I want to point out i could always breathe through my nose, it was just the fact that symptoms started after i broke it and the pressure in my head they thought it was sinuses, 2 ENT appointments since and they tell me ENT wise im fine when shining a torch up my nose and looking in ears etc, he suggested neck was the cause. Also back then i asked my dr to send me to an allergy dr as my throat felt closed up, ;like i was being strangled, she did tests and all ok but wanted to send me to speech therapy as she thought i had a throat muscle problem. I was also sent to Maxofacial by my dentist due to jaw pain and my teeth moving, he was concerned why they are moving so much, always had perfect teeth and they are just moving forwards. Maxo gave me tmj diagnosis. I then had braces as i figured if i got my teeth moved back the other issues would stop, if you look up issues from malaclussion you can see my thinking, 2 weeks i had braces and i was ok and then suddenly i had so much pain, not normal brace pain but agony in face, neck, shoulders, numbness and tingling, burning all on left side of face, i got him to remove bottom braces, pain continued, top ones removed, back to maxo who did mri as i also had a lump develop under my cheeckbone, mri showed nothing worng with jaw joint, maxo now discharged me. Over a year since braces i still cant turn my head, ive had physio, no help, waiting to see a neurologist due to neuro symptoms but ive read up about hundreds of neruo diseases and i honestly think a structural problem and not a disease.

I get left eye blurryness at times, feels like its swollen

TIingling, numbness, burning on left side of face and neck, shoulders and left side top of body

Cant turn head

My pain is under my ear not high at the jaw joint and radiates down my neck

I can recreate pressure in my head, behind my nose if i basically strangle my throat under the jaw

Dizzyness/foggyness/spaced out

Heart palps sometimes

Muscle twitches - newer symptom

Throat feels closed but im used to that now, when i am sick i get almighty pain and cant really be sick anymore

Crunching, squelching and grinding, catching sounds in neck, physio said its normal but when i felt well my neck didnt even crack

My questions are though, ive had mri for jaw joint, a mri for neck and skull inc brain, i have searched these myself time and time again looking for something they missed, ive compared to mri pics on google of styloid and frankly i cant see it, ive also looked at the photocopied xray i had done at dentist and again i cant see anything, i would have thought that over these various things i would have seen something. I have also which is silly i know had my fingers down the back of my throat just where my tonsils are, i can feel a lump either side which hurts if i push on it but i may just be pushing on a lumpy bit of tonsil so im trying to not assume that is it.

Drs in Uk are really unhelpful and dont take kindly to being told what to do so i wanna be really certain this is something i need to pursue and go see a private ENT for diagnosis.

Also has anyones teeth moved, and does anyone ever feel their top pallette in their mouth is moving or feels broken when its not?

And does anyone ever have good days, i very rarely but have had the odd day where i feel well, i would just assume a bone poking into you that you would never have a good day until removed.

Sorry for the long post.

Any answers most appreciated.

You could have the vascular Eagle Syndrome. Whatever you're feeling behind the tonsils....that sounds like styloid. Sorry for the long post...but I know how much you're going to be hunting on the internet, so I will try to help! :)

I have all of these except for....the head turning (I can turn mine), and I don't have facial pain.

The biggest one I have is that facial/neck pressure that you are describing. I can also mimic it by putting hands on my throat. It feels like the pressure you get from hanging upside down and the blood fills your neck and face. I think this pressure is blood, occluded at the internal jugular and/or carotid artery. I think it increases pressure in the smaller veins (which link to those two larger ones), and swells the tissues in the face, sinuses, mouth, throat, and backs up blood in the head. I think it affects return bloodflow to the heart and causes palpitations.

I definitely feel it pressure buildup behind my nose with this and it is not sinus related- it increases as I lay flatter. I sleep on an incline. I have alternating blurry vision that literally showed up on one day in January out of the blue, when all of the other symptoms really developed. I have the brainfog, and did have one vertigo episode, and some lightheaded moments here and there. I have the palpitations. My lower face and lips tingle/numb when I lay down or move my head in a reclined position. My top pallate pulses with my gums because of the pressure in my head. I have the catching in my neck..but no grinding.

I also have very red eyes on the days when the pressure is highest.

Your X-rays might show your elongated styloid process, but they are really really hard to pick out. If the dentist did a panoramic, it would be more helpful.

I can help my symptoms by loosening the anterior scalene muscles in my neck (find a massage person to do this, because they are extremely hard to get to and are near vessels and nodes). It helps to also loosen the sternocleidomastoid and chest muscles. It will not totally relieve the symptoms, but it will help. It might help palpitations, too, if something like your subclavian artery is being pinched (a type of thoracic outlet syndrome problem)

If your styloid process is occluding some vessels in your neck, then tight muscles on top of that make things twice as bad. I don't know why it would happen after your nose break, but mine happened out of nowhere.

When I look up 'superior vena cava syndrome', this describes the head/neck blood pressure, that I feel, but mine is not quite as extreme as the description. Don't get freaked out when you read that, though, it will say that it is caused by a cancer over 90% of the time. However, it can also be caused by other things, and tight upper body muscles (thoracic outlet syndrome) is one of them. Several people here have had this symptom due to the Vascular Eagle syndrome. I had to get checked for cancers, and that is scary, but I think it's a good idea to do it when you have this kind of pressure. They might check the lungs, breast, thyroid.

You might want to see the ENT or head and neck surgeon. You will want another scan, particularly if you want to see if there is a bloodflow issue. A CTA of the head and neck would show this. Your xray might show something, but it won't show if bloodflow is affected...can you up upload a pic of it?

I have good days and chunks of bad days. It is almost always worse when I do a workout with upperbody exercises, which tighten the neck and chest muscles.

My scans show the styloid is elongated and/or calcified, cutting off my neck vessels. I have another test to do to measure the pressure on each side of the styloid process (venous angiogram). Then if it shows the styloid process is really the problem, I will have it removed, and hope that one side is good enough.

I have an article link for you, and a picture of where you might be feeling the pressure. The second pic shows how muscles in the neck can also squash the vessels. The third pic is a good, clear one of the styloid process and the area that can calcify. The facial veins won't drain if the internal jugular is occluded, so you might feel some of your pressure where the blue veins are in this pic?

http://pt02.wkhealth.com/pt/re/merck/fulltext.00006■■■■03000-00...




I don't know what to tell you, except my Eagle's was confirmed by CT showing calcification on the styloid. You don't seem to have had that kind of x-ray done yet, and though CT is only one of several good x-ray imaging techniques used, my suggestion is to pursue either CT or one of the fancy new 3D x-ray conical beam imaging studies. That'll tell you a lot.

My second confirming experience was a deep-tissue cortisone injection. The needle pushing around the soft space by the styloid gave me the sensation of having a plastic tube being knocked around. The ENT was pleased with this description and said it took away a lot of the mystery surrounding my diagnosis.

Good luck.

Hiya, thanks so much for the answers guys, thank you Tee for spending the time to write such a long and informative reply, it’s so nice when someone takes the time to do that. I really hope I get somewhere with drs as 5 yrs on I still don’t know what’s wrong with me and stuff had just got worse, I have been and know too much info on all other things yet I only heard about eagles a few weeks ago when looking something up on Wikipedia. I have been down the tmj road, eustschian tube disorder (left ear only bad after visit to a chiro), lymes disease, thyroi as thats where throay feels tight, sinuses, the list basically goes on, I have looked up thoracic outlet syndrome before but every thing that has a name a an associated dr only seems to be in us, I have not been able to find 1 tmj specialist in uk and I’ve spoken to MANY Dentists, yet I can find hundreds on US sites, thoracic outlet syndrome has been another I can’t find dr for except a chiro and I’ve had bad experience with them. The X-ray I had at dentist was panoramic but I only have a photocopy but on Monday I will scan and upload. I have some mri slides I can upload. My mri when they were checking my neck said there was no artery compression so I’m not sure what to make of that re having vascular but to me lying flat is when I find the most relief so being in that position during mri seems kind of pointless, they should do mri with neck turned. What you said about the pressure is the same as being upside down and blood filling your head is exactly it. The blue veins in the diagram is exactly where my pain/numbness/tingling goes, including into the sinus and eye, I actually have low blood pressure always yet a high heart beat, a Chinese acupuncturist told me once that low blood pressure is bad circulation especially coupled with a fast heartbeat. Do u like to eat things that scratch or stretch your throat, the pain in my teeth and pallette make me want to chew, toffee, crusty bread etc and I get relief in my throat by eating crusty, sharpe things not properly chewed, I also get relief from holding ice in my mouth as long as I can. I’m just trying to locate a ct cone scan that I can self refer and pay for and once armed with this should it show anything I will go and see the dr that is listed on this site nearest to me. I really hope your further tests come back with something positive, or something that they can do to make thing easier, the more I read the more it becomes clear it’s not just as simple as snapping them off. I wish u the best of luck and ill upload X-ray on Monday.

Artery compression and venous compression may not have both been looked at for you. If you are better laying flat, I almost think your cervical spine could be involved.

I have very low blood pressure, too. :) Except if they could measure from the collarbone and upwards, I think it would be sky high.

My throat near where the eustachian should be opening is always sort of itchy, and so are my ears. It is nice when eating a scratchy thing haha!

Believe it or not, you will probably have more luck with thoracic outlet syndrome by going to a good massage therapist. They seem to know what this is. As far as doctors, the medical community is divided on whether it exists or not...this blows my mind. I'm convinced that it does!

You won't find docs for Eagle syndrome by googling it; I think you really have to call the offices of these ENTs and head/neck specialists to find out. None of my great docs have Eagle Syndrome on their sites. Docs who remove skull base tumors seem to have to remove the styloid process in order to get to their tumors. One of my docs does this, and he was knowledgeable on ES. A vascular surgeon is the one who saw that my vessels were compressed on the MRI and CT scans I brought to him. Many previous docs had seen those same scans and did not pick up on it.

I posted about something that I ordered that is for my neck. That thing is helping that horrible neck/face pressure....so I would really encourage you to try to find one, or make one yourself. I feel much better after using this thing for one day, and am hoping it's not just coincidence. It lowered that stupid pressure feeling, and especially the pressure behind the nose. I notice that certain postures can get that pressure feeling back behind the nose, so I'm thinking this whole thing might be a cervical spine issue. Yes, I do have long styloids, but I think those PLUS the neck issue have become the 'perfect storm'. I don't know if this traction device will totally help the face/neck pressure thing, but it's certainly better than it was yesterday before I used it. I'll update if I see major continued improvement from it.

Fact: physicians don't actually know it all. In fact, because they are so learned and so little experienced, often times they miss things that would be obvious to (for example) a veterinarian, who must learn to have xray hands because his patients cannot self-report on any problems. Massage therapists and even a good chiropractor would be in the same boat; they do their work using the hands.

Charlie,

Your pain issues and patterns are a lot like mine. I have pain everywhere the veins run in the picture provided by Tee that on the entire right side of my face, temple area, jaw, occipital, that goes under my clavicle in to my pectoral (angina), down my right arm into my hand, it also goes down my trapezius around my clavicle. I use to be more symptomatic on my left until I injured my right arm indoor rock climbing.

I was hoping all of my symptoms were all due to ES but I think mine is also due to Thoracic Outlet Syndrome on my right side. I had my right styloid removed almost 5 weeks ago. I will be seeing a TOS specialist this week to add to Team BigsBug to rule it in or out. Below are some articles on TOS. I went down the TMJ specialist road first and he made my joint in my right side actually hurt when it did not. I have also had my C5-C6 fused so that is no longer part of the problem. I have done everything non surgical already for TOS. Months of PT, acupuncture, massage, chiropractor, dry trigger point needling, steroid trigger point in my face neck by TMJ specialist and steroid trigger point injection in my shoulder muscle and trap on the right side. My right arm, hand, shoulder, neck and face where the veins and jugular are is my pain pattern after my styloid removal.

http://www.ncbi.nlm.nih.gov/pubmed/18561268

http://surgerydept.wustl.edu/TOS_Brian_Bopp.aspx

I have the same book Tee has and I take it to my appointments now to show my pain patterns to the doctors. I wish you good luck on your journey and that you can find someone to help you with getting some answers/diagnosis.

Hi Guys, I have misplaced my dental xray so cant upload at the moment but i will find them and upload as soon as i have, had 2 really bad days and today is my 3rd bad day, i spoke to the hospital and am going to get copies of my neck/shoulder xray , about a week so i will upload the neck one too. Today and last 2 days i feel like im coming round from a general anesthetic, that foggy rocking side to side feeling, my throats also very closed today like im being strangled but its more on my thyroid gland than anything. I looked at those links you posted bigsbug and i definitely think that it could be part of the issue too, i definitely struggle when trying to do my hair etc with really weak and fatigued arms that also give me numb and buzzy fingers when lifting my arm, first they get really hot before going buzzy, most literature though doesnt really mention face pain, more arms and shoulders. i also saw on another link that TOS isnt a condition taken seriously by most Drs and they are apparently likely to think your just a hypochondriac! Just joyful, i cant express how much i dislike Drs, ive not been lucky enough to find one yet that sits between in personable and patronizing, either its look at you like dirt on their shoe or a sorry for you look that your a headcase and imagining things, they dont seem to understand that if you lived in fantasy land youd be fantasizing you feel great and are on a desert island or something, not wasting money on appointments, petrol and being looked down upon only to leave feeling more frustrated, i understand after reading so much info on the net that a million things can be responsible for 1 set of symptoms and i dont ask anybody to know the answer, would just be nice to be treated as a human being and have a dr to make it their business to get to the bottom of it however long it takes. Sorry for the rant, i have a neuro appointment in 3 weeks and im getting nervous and frustrated already as i im already very aware they probably wont listen properly or they will just refer me to a totally different department which will take 6 months to be seen before they do the same again!! Bigsbug its sad to hear that your symptoms haven alleviated after surgery, 5 weeks i guess isnt long enough to heal from surgery but you would have thought you might be able to feel some difference. Do you know what they will do regarding TOS for you? I have also tried massage therapy, acupuncture, osteopath (made my ears go bad ever since) and every supplement out there for my issues and the only thing that actually helped (i think) was the acupuncture, its was about 2 days after that i had a run of about 2 good days, it may have just been a coincidence though, i also had a deep mercury filling removed from a second to the back molar and replaced with a white one (just in case) and he gave me anesthetic injection which the day after i had another couple of good days, again maybe another coincidence. The supplements i have to say have been no help at all, after all the reading ive done on them i was really trying to believe they would do something but seriously i wouldn't bother wasting your money on anything like that. I defo believe my neck is involved somehow but xray/mri showed nothing and PT didnt help, made things worse after they pressed on things and i never had a major accident either, i kneed myself in the face but i never remember my neck hurting, just my broken nose and symptom's didnt start for a couple months after. I will also take that picture above to the neuro when i go so thank you tee for posting that.

Hiya,

Please see my uploaded dental xray, i dont know if you guys can see anything, i cant, not in comparison to google images of xrays.

■■■■_0001.jpg (1.45 MB)

I looked, and couldn't pick anything out, either. That doesn't mean anything one way or the other; in one of my xrays, it is easy to see them, and I have another where I cannot see them because they get lost in all the white.

Thanks for looking tee, it was a photocopy of a photocopy and from 2 years ago, should get my c spine through in a few days so ill have a look at that and if I see anything suspicious ill upload. Thanks again

Charlie,

Here is an article of a guy in England who had the same issues and what he had to go through to finally get help. I put this up not to discourage but to hopefully help you skip forward to the part where he found help and see if it gives you food for thought about what to do next in your situation. For those not in the UK or in Canada or any other socialized medical nation it is hard to understand the frustration to get the help you need at times. The doctors loose heart and hope themselves because their hands are tied. If it is a simple cheap fix, no problem, otherwise you wait on long wait list or possible don’t get it the help you need unless you find other means that can be so costly most cannot afford it. The US will soon know how painful socialized medicine can be that is Obama's goal.

Charlie, I hope you find help soon. We will be praying for you!

RB

http://www.dailymail.co.uk/health/article-2347329/Father-forced-Google-symptoms-150-GP-appointments-failed-correctly-diagnose-rare-throat-s

Thanks RB for posting this, i dont really wish to comment on the US healthcare as im pretty uninformed and wouldnt want to presume anything incorrectly but from things ive read it seems Drs seem more cautious in the US and they seem happy to refer and do regular check ups rather than just see you when your sick, i guess this is because they then get paid via insurance? I also understand if you cant afford insurance you may not be treated and that you have to pay for your prescriptions, i dont really know how it all works but i would rather not pay my National Insurance which is law here and use the money for private medical insurance as the time for appointments etc would be quicker. In UK they have budgets they stick to, a quota per GP for the number of referrals. Unfortunately this story is just the tip of a massive iceberg.

A few week after i had my son i went to my Gp and told her something was wrong with me and she looked and said everything was fine, id just had a baby and to relax, i got the same thing from my partner, again something didnt feel right so after after waiting another month i went back again, she told me the same thing, everything looked fine, a few weeks later i went back again and physically showed her where the problem was, low and behold she then realized id actually had a prolapse and then referred me. Also after my septoplasty i knew something was wrong, even the people around me kept telling me i was being silly and that it would take months to heal so i ignored the feeling assuming i was being a baby, i was supposed to have a follow up appointment 6 weeks after operation, i didnt get it until 10 months later and between that time i finally discovered why my nose felt "wrong" when i had tissue up one side that then popped out the other side, the operation had left a big hole in my septum. My GP chased up on the ENT appointment and when it finally came round i had to point it out to the ENT and he just went oh yeah you have and that was it! I dont know why when others doubt us be it Drs or family we start convincing ourselves we must be crazy, we know our bodies and when something is wrong.