Suspecting ES, scared and waiting for diagnosis

[abbyd92]

Hello, new here! I recently found out about ES after dealing with TMJ issues over the last several months but after stumbling upon ES, my symptoms are also relating to ES as well. I apologize in advance for the long post and backstory.

Last June 2022 I saw an ENT: for several months prior I was experiencing some pretty bad ear pain (lots of pressure, pain inside and around ear), nausea, and trouble swallowing. It almost felt like my throat was too small for swallowing my food if this makes sense. ENT told me I had allergies, crazy large tonsils and acid reflux, prescribed me some meds and sent me on my way. Never had allergies before. Ear pain didn’t get better but it also didn’t get worse so I left it alone.

Then in July I saw a new dentist who told me I grind my teeth. I’m 30 and I have never been told by any dentist that I grind my teeth nor has my partner of 4 years ever told me I’ve made a peep in my sleep or grind. The dentist scared me into the dangers of not wearing a night guard and gave me this big bulky hard night guard. It caused me to clench. I was waking up in the middle of the night completely clenching the night guard. After a few months and me not thinking much of it (because I don’t have experience with night guards so no idea what the protocols are here) I kept wearing it. In January is when I started experiencing TMJ pain. I was waking up with bad headaches, jaw pain, pain with chewing, clicking popping, cracking sounds. I saw 2 dentists after that who were of no help. One gave me botox (kind of helped) and both told me to just keep wearing the night guard but didn’t listen to my full story.

All of the jaw and ear pain occurred only on the right side.

This February I finally found a dentist who truly listened to me, told me to stop wearing the night guard until I see a TMJ specialist and explained my whole panoramic x ray to me (over crowding in bottom teeth mostly) and maybe a potential partial slipped disk on the right side. I didn’t know anything about ES at this point so didn’t look for or ask about the styloid process. He told me I am not crazy, believes my symptoms are happening and that the night guard could have definitely thrown my jaw off if I didn’t really need it in the first place. I felt relief after several dentists brushed me off.

I have an appointment next week with a Dr. Tanaka, an Oral and Maxillofacial Specialist at Penn Medicine’s Center for TMJ to see if something is actually wrong with my TMJ. I’m also going to ask her if she knows anything about ES.

Here is where ES comes in. My right ear pain has been increasing severely over the last few months, bad. I have been getting some throat pain, still trouble swallowing, throbbing pain in cheek/jaw, more headaches lasting longer than usual, dizziness. These feel different from the TMJ pain I was experiencing before but the one that is the most concerning for me is I can now feel something on the right side below my ear in my neck that is poking near my ear area and feels it is scratching/poking against my jaw bone or just below my jaw bone and it feels SHARP. If I made a certain movement while laying down or just moving my mouth a certain way I will get a sharp jab feeling. Although I don’t know for sure what’s happening internally, this is the best way to describe it. I’m feeling very scared and after researching the symptoms it led me to Eagle Syndrome. I feel I could still have TMJD as well but what is throwing me off is feeling like something very sharp is poking me inside and around my ear/jaw area. I’ve looked in and around my tonsil area and can’t seem to see or feel anything as others have reported.

I’m seeing my dentist this Wednesday and want to ask for my panoramic x ray to see if I can locate the styloid process on each side. Hoping it can show something.

I then called around doctors on the list for Pennsylvania and I will say calling Dr. Cognetti’s office was not a good experience. The receptionist was not friendly and told me I needed to mail in records and he would review and call me if he felt like I needed an appointment with him. They don’t do fax or sending records electronically. Found it strange they need it all mailed in 2023. I asked specifically what kind of imaging/scans he needs and she basically wouldn’t tell me. She said “whatever you have.” Right now, I don’t have anything and am just desperate to find a doctor who can at least help get me proper imaging, diagnose me or rule this out. She had a very elitist attitude and then told me “well he only sees Eagles patients once a month anyway, I can’t help you.” I was really turned off and upset.

I then called Penn Medicine to ask for Dr. Kevin Leahy who is listed here. He apparently does not deal or know about ES from what I was told. The receptionist was nice enough to put me on hold and find out if anyone else is familiar with ES. She made me an appointment with Dr. Karthik Rajasekaran next week super quickly. He is a head & neck surgeon in Otorhinolaryngology department and I was told he is familiar with ES. He seems extremely experienced in many different conditions and surgeries so I am feeling hopeful he can at least guide me in the right direction. I do know that Dr. Raj Dedhia is at Penn and if this appointment doesn’t go as planned I will see if it’s possible to see Dr. Dedhia as I’ve read about him on this forum. I’m at least hoping Dr. Rajasekaran can provide me some insight as to what could be going on.

I have severe health anxiety and this has been taking over my life trying to figure out what is wrong. I’m in pain and I know my body. I truly know something doesn’t feel right. From personal experience it’s really difficult to find caring doctors who actually listen and don’t dismiss real symptoms patients are experiencing.

My questions are:

• What kind of imaging/scans should I be asking for specifically?
• Has anyone ever heard of or know anything about Dr. Karthik Rajasekaran at Penn?
• Do my current symptoms sound similar to anyone else’s? (I do know symptoms can vary from person to person)
• Would something like physical therapy help this or make it worse? Is surgery truly the only solution for ES?
• Does anyone else have both TMJD and ES?

Think that’s all my questions for now but if you have read this far thank you so much. Was very relieved to stumble upon this community and all the resources, advice and support or can provide.

[Jules]

Hi & welcome to the site!
There’s lots of info about common symptoms & possible explanations in the Newbies Guide Section which you might find useful if you’ve not seen it already, your symptoms could be caused by the styloids…Here’s a link:
ES Information: Common Symptoms And Possible Explanations For Them - Welcome / Newbies Guide to Eagle Syndrome - Living with Eagle
A CT scan is the best way to diagnosed ES, but they can be seen on a panoramic X-ray, so if you can get a copy of yours it might be useful. I’m not sure of the US system, whether your PCP can send you for a CT or does that have to be ordered by a specialist? (A CT needs to be from the base of the skull to the hyoid bone & should be requested to evaluate for ES)
If that’s the case, perhaps Dr Tanaka could order you one, or Dr Rajasekaran otherwise. (a head and neck surgeon is a good bet to see as they operate in the right area & quite often remove the styloids routinely to give them more access to remove cancers etc)
I’m sorry that Dr Leahy doesn’t treat ES- all the names on the list are given to us by members who’ve had surgery with them, but the original list was compiled a while ago so maybe he doesn’t do the surgery any more. I’ll remove his name from the list!
And frustrating for you that Dr Cognetti’s office weren’t too helpful- I don’t think I’ve heard of others experiencing that…maybe some of the members who’ve had surgery with him can let you know what scans/ reports etc he likes to see.
There’s info in the Newbies Guide Section about treatments- there are some medications which can help, and also some members have had lidocaine/ steroid injections into the tonsillar region which has made thigs easier for some. PT can help with loosening muscles which have got tight because of the pain, & sometimes bad posture can worsen symptoms. Be careful to see someone who is aware of ES though as some exercises or manipulations could worsen nerve or vascular damage. Surgery is pretty much the only real ‘cure’, but other treatments can keep symptoms manageable, so some people find they can live with it & don’t opt for surgery.
TMJD & ES together are pretty common, there have been several discussions about this so you could do a search for that.
I hope this helps, and that you get somewhere towards a diagnosis with the doctors you’re seeing!

[Isaiah_40_31]

I have not heard of Dr. Karthik Rajasekaran and I don’t think his name has come up on our forum, however, we know that there are excellent ES surgeons out there whom we don’t have on our list because they haven’t been mentioned on our forum. We usually wait until after we learn the outcome for someone who’s had surgery w/ a doctor who’s new to us before adding him/her to the list.

[Snapple2020]

Welcome Abby.

I do have have significant TMJD and struggled for decades with it. I was told some years ago I have osteoarthritis in the right side of TMJ joint. I also had surgery for ES on both sides due to what started as mid-neck shooting pain into my ear on right side. Often the shooting pain was triggered when I swallowed.I had tonsils and adenoids out at age 17.

Im not sure where to start. I was told I grinned by several dentists but I know that I am more of a clencher as my teeth are not that bad. I have been thru several mouth guards, one a few years ago that was just plain expensive and caused more crowding in my lower front teeth. My first try at a custom guard resulted in making by teeth worse too. Dentists whom claim to do TMJ work in my opinion are just in it to make money and I urge caution being roped into to that. I know need braces to fix the overcrowding the appliance made worse. I can only suggest a “Plackers” product called NO GRIND. They are soft disposable night guards and very easy to wear.

My TMJ issues are likely worse because I have had 2 whiplashes and ehlers danlos hypermobility and have some neck instability. I have found quarterly botox injections to be the most helpful for the jaws and temples and sometimes below ears in neck and occipital area. I sometimes ask for lidocaine and/or steroids if it is inflamed.

I had a lower right molar removed in 2021 that triggered massive jaw pain and ongoing vertigo and dizziness. That a whole other story.

I think you are on the right track going to Penn’s Oral program. I would not expect them to know much about Eagles or support looking into it. I have been seen on and off thru similar program at the University of Washington Oral program. They see elongated styloids all the time and ignore them generally. they did that to me in 2015. Since then I have been back and they are focusing on lidocaine trigger point injections based on your pain patterns. They do use botox and steroids (reduce inflammation) as well when needed. I would expect a combo of this moving forward.

Botox is used quarterly and it is not an exact science. They start out low dose and work from there. Its best to start off low dose and work up (in my opinion).

I get regular massage and suggest craniosacral therapy.

ITs possible Penn doc might be willing to order a CT Scan of neck with a specific note to evaluate for Eagles Syndrome. Since you are going there soon, Id beg for that to be done. If not, go to PCP and ask for higher to order the CT Scan of neck. Some ES docs without contrast, others want contrast. I suggest get with and without contrast to cover your bases.

I had ES surgery in 2020 and it seemed to be helpful and calm until I had the emergency tooth extraction in 6/2021. My TMJ doc at the time said he thought it was an “aggressive” extraction based on my bruising. He even suspected I might have had a fracture in the jaw. I had a scan and that did not occur. I warned this oral surgeon I had TMJ and even gave him pano report of my jaw. I think he ignored it and it spun me out for months.

I have since had the shooting neck pain to ear reoccur. Ive had all kinds of scans and evaluations and still the jury is out on this one. I can say more on that later but narrowing it down to scalenes and or base of neck at the SCM. IM certain I have some nerve compression. I knew going into ES surgery that it might not fix all my issues but it made sense to go there first and see. I dont regret doing the ES surgery as the CT Scan supported doing the surgery. With pre-existing TMJ, it makes it more complicated. Also keep in mind that ES surgery can trigger TMJ flairs. It did with one of my surgeries, not the other side.

I hope at minimum the new ENT you are seeing will believe in ES and at a minimum order the CT scan to see if your styloids are elongated and if you have calcifications. Be prepared for these docs to be dismissive as many are. I hope that helps. Feel free to message me privately

[abbyd92]

Hi Jules,

Thank you for the welcome and your thorough response. I will definitely be requesting a CT scan from head and neck surgeon as he will most likely be more experienced in this area.

I know it was not Dr. Cognetti I spoke to myself but unfortunately some receptionists don’t have the best customer service and care for the field. I have read wonderful things about him and depending on how my appointment goes with Dr. Rajasekaran goes, I’d still consider Dr. Cognetti if I were to ever need surgery. Will keep updated with Dr. Rajaswkaran to see how familiar he is with ES, hoping he can help me and other patients.

I’ll take a more thorough look around in the newbies section but I truly appreciate all of your feedback and suggestions.

[abbyd92]

No worries at all, just thought maybe a member has heard of him. Will keep updates on my appointment with him to see if he could potentially be added to the list. Thank you!

[abbyd92]

Thanks for the welcome and for sharing your story! I’m sorry you’ve had to go through all of this but glad to hear you’re doing okay.

As far as the grinding, I truly still don’t believe I’m a grinder and the night guard has definitely done more harm than good. I do believe TMJ is a money grab in a lot of cases from what I’ve seen but I do truly believe there are doctors out there who really know what they’re doing and can help. I have heard of phases of treatments starting with custom orthotics/splints to reposition the jaw which results in needing braces or Invisalign after. Hoping this isn’t the case for me. My dentist and PT believe it is muscular. I’ve tried Botox and it definitely helped!

I’ve read great things about Penn’s Oral department for TMJ and the specific specialist I am seeing there. Have also heard great things from my primary, PT and other patients she’s worked with. I’m kind of a freak about researching doctors and offices before I even make an appointment. So feeling hoping and hoping it goes well.

I am extremely hyper mobile (been my whole life) and have suspected hEDS. Currently going through it to get a real diagnosis (doctors really like to avoid talking about anything EDS related) but I truly believe I have it which makes sense for a lot of health issues I’m facing recently. Getting genetic testing soon to see if I have any EDS genes.

The head and neck surgeon at Penn I’m seeing I feel more confident in discussing ES with. Reviews for him are fantastic. Read he specializes in head/neck cancer, jaw disorders, and Stylohyoid Syndrome. Was told he knows about ES so feeling hopeful. I will definitely be requesting a CT scan during my appointment. My appointment is on 4/5 and I’m just eager to see someone for this.

Sorry to hear about the tooth extraction. I feel some doctors just simply don’t care enough to listen to other patients conditions and can unfortunately do more damage when they should really be helping.

I’m well aware of dismissive doctors from past experiences. Fortunately lately I have been seeing some pretty great doctors who truly listen and try to find out what is going on. Hoping it keeps up! These communities really are helpful with rare diseases and conditions so patients don’t have to go through endless doctors and can possible find the good ones through other patients.

Although I don’t know what I have going on for sure, glad I have these appointments that can hopefully point me in the right direction and order some CT scans.

Thanks so much again for sharing your experiences and replying to my post. It’s definitely so helpful. Will keep updates here after my appointments. Thanks again!

UPDATE: Unfortunately Penn cancelled my appointment with Dr. Raj and says he cannot diagnose and can only perform the surgery. I feel lost now in how to get these CT scans done and get a proper diagnosis.

[Basul]

You need a CT without contrast. If your styloids are elongated, they will show. I have been assessed by three neck surgeons, and two have offered surgery, as my styloids are elongated. My left ear has been bothering me for a year, and I have face tingling that comes and goes.

I was previously diagnosed with Atypical Trigeminal Neurolgia, and I had a MVD in 2021. The neurosurgeon found six compressions. However, it is not clear to what extent this might have been the culprit. I never had ear problems prior or facial tingling until a year after surgery.

[Danielle1]

@abbyd92 You must be in PA. I live in NJ. Dr. Rajasekaran does not treat Eagles or do the surgery. I was told the same thing, made an appointment and then they called me back to let me know he does not treat it or do the surgery. I also called Dr. Leahy’s office too. I drove to Dr. Cognetti’s office with my scans. I didn’t have an appointment and walked in and asked if I could have them scan my CD’s and then let me know if Dr. Cognetti would see me. I got a call the next day with an appointment in April. They were so nice. I didn’t want to wait that long. For me, I went 4 years and 28 doctors without a diagnosis. I diagnosed myself and had surgery with Dr. Hackman on January 13th of this year. I also had to send my scans to Dr. Hackman’s office before he would see me. That’s generally the protocol. Penn Medicine is iffy. The 3rd ENT I went to was at Penn Medicine and he was an idiot who didn’t listen to me.

What you need is a CT Scan with contrast. Here’s what you do - Call Dr. Scott Roof at Mt. Sinai in NYC (212) 241-9410. You don’t need to send in your scans before your appointment. DO NOT have surgery with him. I had a consult and passed. He’s only done 20-30 surgeries and quite frankly I walked out of there thinking there was no way I’m getting on his OR table. But, you can get a CT scan and then send that in or drive it over to Dr. Cognetti’s office if you want to stay local. I haven’t canceled my appointment in April for his consult (I forgot!) so you can have my appointment. I have to call and see when it’s for (I forgot).

For Dr. Roof, he goes by the classic symptoms. Throat pain, feeling like something stuck in your throat, etc. He also understands that front neck pain is also a symptom with ES. When you go for the CT scan at Mt. Sinai ask them for a CD of your scan before you leave. They’ll make one for you.

Don’t give up! We got you :-).

[Danielle1]

@abbyd92 I also had TMJ and still do a little. I have a mouth guard, and if you’re willing to travel to Clifton, NJ I have a great TMJ guy (Dr. Vita). I went to 3 prior to him and almost got a bit screwed up with my jaw with one of those mouth guards. I would suggest having the surgery first. After my surgery my entire jaw changed. He had to re-modify my mouth guard. I just went again today and only needed a slight adjustment. My TMJ has gotten better after my ES surgery.

[Isaiah_40_31]

@Danielle1 - Thank you for sharing this good info! I also experienced improvement in my TMJ symptoms after ES surgery. Interestingly, I can hear my right jaw joint when I chew now - it sounds like someone is crinkling plastic in my ear but I have no pain whereas it used to be painful.

@abbyd92 - My dentist made me a night guard for my upper teeth when I was in college because I was clenching when I slept, & my jaw joints were very painful. It made everything worse so I quit using it. I got braces when I was 48 to realign my bite & take some stress off my jaw joints. Braces came off when I was 50, & things were better for awhile. My orthodontist told me early on that braces would only be a temporary fix because my jaw joints were pretty worn out. Scroll forward from there…a new dentist recommended a night guard for my lower teeth which I chose to try. It was very helpful, & I still use one now - 16 years later. Who knew jaw issues could be so life impacting & hard to treat!! Danielle1 also made a good observation about bite changing after ES surgery (if you have ES). We have a number of members who have noted that happened to them.

[abbyd92]

Hey Danielle,

Thanks so much for your reply. Yes I’m in PA, in Philadelphia! I was told that Dr. Rajasekaran cannot diagnose ES but he can do the surgery. They actually cancelled my appointment yesterday for this reason because I did not have CT scans to show or a diagnosis. They specifically told me to send them a CT with contrast to review and then call me back for an appointment. This is what the receptionist told me yesterday. Maybe he has done surgery for ES since you last spoke to them.

I was able to get into an ENT today at Penn. I’m going to ask him to order me the CT scans I need so I can at least send them to Dr. Cognetti or other doctors. Receptionist wasn’t super nice when I called the first time but maybe I caught her on a bad day. I actually live a few minutes from their office so I could definitely go drop them off. I know that he only sees ES patients once a month so I’m wondering how long it would even take me to get in there for an actual appointment. I would also rather have surgery close to home and don’t want to have to travel if I do need it. Penn Medicine can be either really great or really eh.

I’m so glad you had the surgery with Dr. Hackman and it helped you! Been hearing many great things about him. I will look into the doctor in NYC if this ENT cannot order me the scans I need. I don’t have a car or drive so it’s hard for me to get out of state.

I’m nervous for my TMJ appointment on Monday. Seeing Dr. Tanaka at Penn and heard only good things so trying to remain hopeful. I know what I need is an orthodic and not a night guard which are two very different things. I’m not going to pay for a splint/orthodic/night guard until I can rule out ES first.

Thanks so much for your help!

[abbyd92]

@Isaiah_40_31 My new dentist told me to stop wearing the night guard my prior dentist gave me as he also believed my night guard caused the jaw issues in some way that I’m experiencing. Since a few weeks of not wearing it I can say it has gotten better by the day but still not great. I also heard bottom night guards have worked much better for a lot of people, glad it’s working for you!

I had braces when I was young but unfortunately didn’t keep up with wearing my retainers. Bottom teeth shifted the most but they still aren’t bad in my opinion. Invisalign was mentioned to me but want to rule out ES entirely first until I make that decision to slightly correct my teeth.

[abbyd92]

@Isaiah_40_31 @Danielle1 @Jules @Basul

Was able to get into an ENT at Penn today. He was familiar with ES but he does not believe I have it and told me how rare it was, but also did not completely dismiss me. I was figuring that is what I would be told. He did explain based on my symptoms that I could definitely have elongation of the styloid or calcification (sounds like the same thing to me as ES but I could be wrong?) and also noticed my thyroid was enlarged, so we are checking that as well. He was honestly very kind, listened to me and told me he’d order any scans I’d like to put me at ease and check to see what could be going on. He did say I could have surgery to remove it on the right side if that is the case.

He ordered me a neck CT scan w and w/o contrast and told me we would personally go over the images together in office and measure the styloids and check for calcification, which I really appreciated. Overall was a better experience than I expected and I am getting somewhere at least. I will most likely send the scans to Dr. Cognetti after to get his opinion as well since his office is so close to me in Philadelphia.

Thanks for all of your help everyone, appreciate the support!

[Danielle1]

Hi there! Just to clarify, I have an orthotic not a night guard :-).

[Danielle1]

That is great news!!

[Isaiah_40_31]

Hi @abbyd92 - We have seen over & over again that doctors who know about ES have a different perspective of it than those of us who have it. I scratched my head over the fact that he said “based on my symptoms that I could definitely have elongation of the styloid or calcification” but didn’t define that as ES. That is the very definition of ES!!

You’re right - elongation of the styloid is also called calcification of the stylohyoid ligament. In some cases, the styloid itself actually elongates due to excess calcification, but in others, it elongates due to the stylohyoid ligament, which is attached to it, calcifying. I had one of each & could clearly see that in the 3D images from my CT scan.

Your plan to take your scan to Dr. Cognetti sounds perfect. If you decide to also give a copy to a doctor in NY, @KimberlyNYC & @PamelaInNYC had some good discussions about who they’re seeing & why. Staying close to home for surgery is always the best.

[abbyd92]

@Isaiah_40_31 My thoughts exactly! I’m new to this but have done enough research to say that pretty much sounds exactly like ES. Either way I was happy he took my concerns seriously and ordered the scans for me.

Also thought it was nice he offered for us to review them together, but will be requesting copies to send off to other doctors. I’ll look into those others but yes Dr. Cognetti is several minutes from my home so that is a plus but I am also open to other doctors opinions too. My CT scan is next week so really just waiting for now until I get those results!

[Jules]

A bit weird but glad that he was nice & is going to check the scans when you have them! Good that you’re near Dr Cognetti too

[KimberlyNYC]

Good luck - I hope you find the answers you need!