Not Diagnosed / Looking for symptom confirmation

Hello,

I am currently not diagnosed. I’ve seen a few posts here in regards to health anxiety and how all of their symptoms freaked them out and made them believe they may possibly have cancer etc.
I was told I have TMJ by an ENT who spent like 5 minutes with me and really didn’t do much else.

My diagnosis journey is unfortunately not as easy as everyone else as I am currently pregnant and have only begun to have symptoms arising more during this pregnancy. I can’t get the CT scan I need unfortunately at the moment. The only sort of scans I have are regular X-rays from my chiropractor around July of 2021. I am fully convinced I may have ES vs TMJ.

Symptoms I’ve experienced:

  • left sided only jaw pain
  • left sided only ear pain
  • neck pain
  • left sided swallowing difficulty
  • feeling of something stuck in throat left sided only
  • left sided facial tingling / tongue numbness off and on
  • burning mouth
  • dizziness
  • headaches on left side behind eye and temple
  • C1 + C2 “atlas out of place” per my chiropractor every single time I see them yet they are no help.
  • Weird pain by my left tonsil area which I can feel a hard sort of projection back there.
  • not sure if I can actually feel my styloid but when trying to find pain relief and rubbing my jaw and “under neck area” I can feel a sharp pointy bone on my left side back by what I would consider is the corner of my jaw but under my chin area?

I hope I’m making sense as this whole thing has been just so annoying and worrisome. Any suggestions are greatly appreciated! I have reached out to Caring Medical with Dr. Hauser as I am located in Florida but they also suggested waiting until baby is here (Due July) so I can get scans done.

I suppose my fear is waiting for scans when I may possibly have something other than ES? But I truly feel like I fit so many of the boxes for this despite the “rare” diagnosis.

HiGreenway22!

Welcome to our forum! How hard to have something so exciting to look forward to while feeling lousy. Your symptoms definitely sound like you have an elongated styloid on the left side. Yes, an elongated styloid can be felt in the throat where you describe you’re feeling it & also under the jaw in the area you’ve mentioned. I could feel mine in both places but found it first under my jaw.

We have learned that hormonal fluctuations can increase ES symptoms so your pregnancy is likely contributing to the increase in your symptoms’ intensity.

The nerves most likely causing your face/ear/jaw/eye/headache/burning mouth symptoms are the facial & trigeminal nerves. The trigeminal nerve has 3 branches (see picture below) which cover the areas where you’re having symptoms. The accessory nerve can cause neck, shoulder & arm pain. The glossopharyngeal & vagus nerve can affect your ability to swallow. All of these are commonly irritated by ES.

We have a number of members who’ve been diagnosed w/ ES at Caring Medical, however, none of them have received significant help from the treatments they received there & all said their care was quite pricey. I think there’s a very good chance you do have ES & not something more insidious.

I hope you don’t have long to wait before your baby is born so you can get the scans you need for a diagnosis. :gift_heart:

Thank you! I am happy to have found a place to ask questions regarding something that so many seem to know little about it anything at all. It is only due to my poking around constantly due to pain that I’ve noticed these areas! I considered that they could be normal parts of my body but both produce pain and headache type feelings on the left side when pressed.

So interesting to hear hormones can increase symptoms of ES. I am unfortunately learning that despite all of the excitement being pregnant can bring on lots of weird things!

I have been informed by my primary doctor that trigeminal nerves can cause all of those symptoms and did mention that due to having Covid back in September this also could have added to the increase of symptoms. Not sure if Covid & TN has been linked anywhere on this forum. Or possibly if Covid could also increase ES symptoms due to inflammation response?

Yes, I do agree they are quite pricey. Honestly it was a random video of Dr. Hauser speaking about ES that I came across that convinced me that was most likely my problem vs TMJ. I do believe that my primary doctor would gladly order me a CT scan once I deliver my baby. I suppose from there it’s finding the correct person to agree that ES is my issue. Anytime I try to find an ENT with any info on there website regarding ES I have no luck. I was shocked when I saw Caring Medical is only about an hour from me which is why I decided to give them a shout.

I am due July 22nd so I really don’t have too far to go and I am managing my symptoms as best as possible while waiting. I am truly just hoping for a diagnosis of some sort so I can stop feeling like a hypochondriac! I pray it’s nothing serious but also that if it is as I’m suspecting ES I can get diagnosed quickly and figure out a good idea of how to manage pain/fix the problem completely!

Welcome to the site, & congratulations on your pregnancy!
It certainly sounds like you could have ES; I didn’t have the trouble swallowing & pain in my throat, but have TN Type 2- aching & burning (I did have tingling & numbness before surgery but that’s gone now, the pain has improved too)
When you press the bone that you can feel, does it make the pain worse? It often does with ES.
I was diagnosed with a panoramic X-ray which I had at a dental clinic- I don’t know if that’s possible when you’re pregnant? Quite a few members have posted theirs on here to show their styloids.
As Isaiah says, symptoms can very with hormones, but also when you’re pregnant relaxin is released to relax the ligaments in the pelvis, I wonder if this might alter structures in the neck a bit too which could be why you’re getting worse symptoms? It’s a very tight space in the neck, so even a small shift could bring styloids into contact more with nerves or blood vessels.
I hope that the info you’ve found on here is reassuring, best wishes! :hugs:

1 Like

Thank you! The trouble swallowing comes and goes and I almost feel like it might be partially me psyching myself out sometimes because I have experienced some issues. My symptoms seems to change from tingling/numbness back to aching/burning and so forth. It’s really so hard to pinpoint and sit here and list EVERY symptom because I truly feel like I’ve been experiencing so many weird new things since this all started.

I can feel a long sharp bone around the corner where my jaw and chin area meet. If I press to the side of it it produces pain that shoots to my left temple and produces almost a headache type feeling.

My general dentist does not have a panoramic X-ray (weird I know) but they did a bite wing once I entered the second trimester to rule out any sort of cavity infections etc. They made me a custom night guard and basically told me that once I’m done being pregnant they would refer me to an oral surgeon who specializes in TMJ. Although I am starting to believe that I am misdiagnosed or in addition to TMJ I could have ES.

Yes, all of my doctors and practitioner type people I see (acupuncture, myofasica etc) have all mentioned this about relaxin and how it can really make problems show up due to the laxity in my body. I’ve been told I’m almost “too mobile”. I am hoping perhaps once I give birth symptoms may go away a bit as I didn’t have this many daily symptoms prior. Unfortunately all of these symptoms are head and neck area symptoms which has led me towards ES… especially since I can feel a boney protrusion by my tonsil area and it produces pain!

I appreciate the feedback :slight_smile:

2 Likes

My ENT suggested I go get an evaluation for TMJ. And that required a panoramic x-ray. The longest Styloids are very easy to see. The dentist had heard of Eagle Syndrome, I was surprised that I wanted to see if my styloid’s were elongated. They were off the panoramic x-ray they were so long. Long story short after an extensive Google search I found a base of skull surgeon in Stanford. That was Dr. Samji. I was his 13th patient. He now has done hundreds of surgeries for Eagles. Best of luck In your search for a diagnosis.

1 Like

I’m not sure what happened when I replied. The format got goofed up.

Hi @polly,

I fixed the format problem. Not sure what happened myself!

WOW! you WERE one of Dr. Samji’s early ES patients! When he did my surgeries, he’d done about 75. I felt like he was a pro compared to another doctor I consulted with. He no longer works for Stanford but is part of Camino ENT an ENT group practice. He is now in the San Jose, CA, area.

The swallowing issue you’re noticing is also an ES symptom. I had a problem w/ that. My earliest ES symptom was choking on food. It happened twice in 2 weeks where it was so bad I had to have someone do the Heimlich Maneuver on me so I could breathe. It was pretty scary. I started cutting my food in smaller bites after that. I think part of my problem was that my tongue wasn’t working 100% correctly so I’d swallow before I could get food chewed adequately. Kind of crazy.

I do agree w/ you that I’d suspect ES before TMJ as the cause of your jaw/face pain. I have pretty bad TMJ, &, at times, it has stirred up my TN which has given me migraine level headaches & even caused my nose to hurt (yup…that nerve runs down the side of your nose, too!). That bony protrusion you feel in your throat is pretty telltale of ES, but needs to await a CT scan for confirmation. I know you’ll get that ASAP after your baby is born.

Exciting that your delivery date isn’t too far off. I will be praying your symptoms don’t get any worse & even take a rest so you can enjoy this special time in your life. :hugs:

2 Likes

TMJ disorders/clenching the teeth may cause ES.
For more info, look up discussions where @Cupcake5 mentions meeting up with one specialist who described the mechanism behind.

So it’s possible both issues are in place and in effect.

2 Likes

Yes, I have my second ES surgery with him when he was at El Camino clinic. He had done 55 surgeries then and he said I had the second largest bone that he had removed.

2 Likes

Hi Greenway22 and welcome!
So many congrats on your pregnancy! Symptoms aside, you must be so excited :blush:. July is just around the corner…it’ll be here I’m no time!

You and I share very similar symptoms. After a year and a half of a crazy rollercoaster ride, I finally got a diagnosis last October and am awaiting a surgery date…they say it will be done in May.

I also have it primarily on my left side (although I’m bilateral, the right side thus far is asymptomatic) ear pain/fullness…feels like someone has their finger stuffed deep in my ear, sometimes my TMJ gets achy, major deep neck pain just behind the curve of my jaw and right under my earlobe and down the side of my neck, my throat and back of tongue burn daily starting with no pain but it gradually gets worse as the day goes on…symptoms seem very positional too and get worse when sitting vs moving about, I had many Chiros suggest also C1-C3 issues like you and I’m glad I stopped going because if they aren’t familiar with ES, this could cause issues with the styloids during adjustments, I have only occasionally felt like I had a sharp pencil poking me in the tonsil area but mostly it just feels like a bad, left-sided sore throat that never goes away. I had an ES experienced ENT do a little back throat feel and he “thought” he could feel something but I didn’t sense confidence. Regardless, my CT still shows the proof. I also had reflux…which was in part misdiagnosed and I had surgery for after being advised this was the root problem though many symptoms didn’t resolve post op. The reality with what I know now is that most likely, the symptoms of reflux were due to Vegus nerve irritation kind thanks to these styloids.

So as others suggest, your symptoms are very tell-tale of ES and I’m so sorry that you aren’t able to confirm this just yet. If there’s any good news, your proactive attitude has you on a reasonable path far sooner than most! And as a boost of faith, if your docs felt there was anything sinister at all (like cancer), they’d be on it! Feel confident, that isn’t a consideration :blush:

As for this “rare” condition…I’m beginning to feel that the only reason it’s rare is that there’s simply not enough awareness. I’ve made it a point to share my diagnosis (and this forum as a toolbox of knowledge) with all the kind specialists who’ve helped me along the way because I feel it’s important for them in their field.

I also admit, I’m anxiously awaiting my styloidectomy so that I can assess my symptoms post op and can hopefully go back and educate the very people who misdiagnosed me :stuck_out_tongue_closed_eyes::grin:

I wish I had some great advice to offer you that you haven’t already gotten…unfortunately, it’s a waiting game for you for right now. But indeed spend some time here, read up, ask lots of questions, vent or have a pity party when you’re down, and by all means shout your joys…you’re in the perfect place for support along this path! :smiling_face_with_three_hearts:

4 Likes

Hi! Thank you! Yes, very excited despite all of these weird symptoms popping up and making me feel like something is seriously wrong with me!

So glad you finally were diagnosed. The symptoms seem to change but remain the same (if that makes any sense at all :roll_eyes:)

I also feel best in the morning with my pain increasing through out the day as well as the burning in my mouth! I have also stopped going to the chiropractor. They did take a look at the X-ray films they have when I asked about ES (they had no idea what I was talking about and basically thought I was crazy). After looking into them and talking with their radiologist they did say that my styloid looked calcified but they didn’t think it looked long enough to be causing my symptoms. These were just basic X-rays though and know I will need a CT scan to confirm diagnosis.

Funny you mention the vagus nerve. I’ve been seeing my primary doctor quite regularly since having Covid very badly back in August-September. He mentioned the virus attacks the vagus nerve and can cause TN symptoms. Quite honestly I didn’t have many symptoms of any of this prior to that Covid battle. Not sure if Covid could have anything to do with any of this or not.

I hope your surgery goes well & I do feel a bit ahead of what I’ve seen others going through with figuring it out. I am just hoping I am correct & it’s not possibly something more scary! The symptoms are just all so weird and as I said above changing day to day but remaining in the same areas. I feel like a crazy person but I am almost there with this pregnancy & then hopefully will have my answers!

I can’t remember the dilution off hand, but bicarbonate of soda dissolved in water as a rinse can help with burning mouth syndrome, you can look it up online. A few members have mentioned this & I’ve had it from time to time…at least that should be safe for your pregnancy I would guess?

1 Like

Thank you! It comes and goes and I have also read it can be from my fluctuating hormones with pregnancy too.

1 Like

Hi,

I am in Florida also and I went to ENT Dr. Jonathan Morgan in Largo, FL which is about eight miles from Clearwater Beach, FL with the same throat issues as you have. He sent me to get a CT scan with contrast in the same building as his office called Bay Care-Bardmoor Imaging. The CT scan results came back and I was diagnosed by the radiologist with Eagle Syndrome. Then I found Dr. Anthony Bunnell at UF Health in Jacksonville, FL and he did my surgery in July 2021. He has a fellowship in head and neck micro vascular surgery. He is a wonderful doctor and has done many Eagle surgeries. When I was going through my anesthesia pre op questions, the nurse said”you’ve got a really good doctor doing your surgery” which made me feel very confident. I am now symptom free. I feel like I have my life back again. So if Largo, FL is not too far for you, you might want to try Dr. Morgan. Then if you are diagnosed, schedule a consultation with Dr. Bunnell. I hope this information helps and you are able to get some relief soon. Please feel free to reach out to me if you have any questions.

Here are the doctors:

3 Likes

This is great to know! I am only a little over 1 hour from Clearwater! I unfortunately will have to wait for the CT but this is fantastic info on who to call as soon as I am able to. Thank you so much!

What other symptoms did you have that helped to pinpoint ES prior to your scan? Was he suspecting ES before your scan?

1 Like

My worst symptoms were burning sore throat, feeling like there was something stuck in my throat, trouble swallowing and sharp shooting pain up to my ear. The ER doctor thought it was neuropathy at first but luckily he did his job thoroughly and didn’t stop at just his opinion and sent me for the CT with contrast the same day. That’s when the radiologist diagnosed the ES. The ENT said surgery was the only way to fix it. He said it might just get longer and start to cause more issues. That’s when I went to Dr. Bunnell for the consult. I had never heard of ES before all of this. So I was diagnosed first and then joined this group.

2 Likes

I had my symptoms for 18 months before finally landing at the ENT. Before that I was misdiagnosed by my gastroenterologist as having acid reflux. I took all types of proton pump inhibitors for months and none worked. I even had an endoscopy with that doctor :weary:. So I got a second opinion from another gastroenterologist at Cleveland Clinic in Weston, FL and he ran a 24 hour PH Impedance test on me which ruled out acid reflux and luckily he told me I needed to go see an ENT. So I did and that’s when I got my ES diagnosis. Do yourself a favor and get to the ENT first and get the CT with contrast.

2 Likes

Hi beachlady,

I also started my ES journey w/ an upper GI but for a different reason. My first symptoms of ES were choking on food & water. I thought I had something wrong w/ my esophagus so I asked to be scoped to see what was going on. Of course, nothing was found until a couple of years later when I developed an odd neck pain & a lump under my jaw.

1 Like