It’s interesting to note that I saw my primary doctor after being scheduled for ES surgery & I told him what my lump was. He recalled knowing a doctor who had ES 10 years earlier. He also told me that surgery had not helped this other doctor. That was discouraging. In retrospect, ES surgery was likely less well documented & probably there wasn’t enough of his styloid(s) removed to make a difference. (Obviously the other Dr.'s surgeon was not Dr. Samji as he still in school at that time :wink:).

Oh wow! I’m sure you’re on to something re knowledge of ES that long ago.


I will follow-up on that topic next time I’m in the office. If the doctor who’s suffering from ES is still around I’ll make sure he gets the info about Dr. Samji. :wink:

Isaiah_40_31 & Highhopes!!!
About 4 years ago my new GP did what she called routine blood work. My TSH came back at 135. She called me ASAP to say she was incredulous that I wasn’t in a coma or at the very least couldn’t believe I was upright. I was only in her office for the 1st time ever because I had a “heart attack” scare a few days before. She asked me to please go straight to my pharmacy and pic up the RX she had already called in. I have been on levothryroxene ever since. She told me my thyroid had already gone through the Hashimotos and was now dead. I had seen a neuro 3 years prior to that because I thought MS. Told me it wasn’t after the brain scan and blood work. In fact it was “nothing” again. He failed to look at the 2nd page of blood work to note my TSH of 155! So, all those years without treatment! Is that part of the ES puzzle? I don’t know…I had many of my ES symptoms for a number of years before the TSH blood work. But, maybe I had the Hashimotos then! My right parotid has given me fits from the beginning I think. It is now atrophied. The mass (tip of the styloid) under my jaw/ear has been there for a long time and every time I complained to my ENT, he blew me off because he never went deep enough on the other side of my jaw bone to really feel it. I think “other side or the inside” of the jaw bone almost describes the lump/mass location better than “under” thought that fits too! LOL

Your story is so unbelievable. You’ve gone through so much! Such a big thing for the neuro to miss!! In sorry youbhd to go through that!

You know, I think you description of inside the jaw fits better for me too!

These stories are all so intriguingly similar. I wish more studies were done on ES. Maybe a link would be found? If there is a link it would be great for docs to have that knowledge to speed up diagnosis.

Hopefully it’s on the up and up for you now!

Ok, so I concur, my lump was inside my jaw bone, too, in that soft area under your chin that gets saggy when you get old except mine was just inside the jaw bone, not in the area that gets saggy. (Sad to say I’m already there. :joy:)

kiZe6159 - I second what HighHopes said. I’m very sorry for your misdiagnosis or undiagnosis history especially w/ test results that provided valuable info that was missed. YIKES!! Glad you finally saw a more astute doctor who took care of you properly!

FYI, many of the people but not all people on this forum have some sort of thyroid dysfunction - Hashimotos, cysts, or other thyroid issues. Which came first, the chicken or the egg? God alone knows. In retrospect, I may have had ES symptoms for much longer than I knew but as there was no pain involved, I was diagnosed for the symptom of the moment. Several years before the pain started, I went through a period where I often choked on my food or what I was drinking. I also went through a period where I had what was diagnosed as positional vertigo. I had severe tinnitus in my left ear for a time but it subsided. These things happened randomly & not simultaneously. It’s interesting to think back & speculate now that I’m styloid-less. :wink:

Isaiah_40_31…yep, that spot right up there by your ear lobe and where the jawbone changes angle! Yep, symptom of the moment vertigo, choking, tinnitus…all of that and more was diagnosed “separately” by my ENT of many years. When I asked him last year why my parotid gland was atrophying (radiologist commentary on CT scan done on it) and why is that area so sore…he says “I dunno”! Why oh why did it take him so long to figure it out? I even complained constantly that something was stuck or something was wrong in the area of where my right tonsil used to be.
I sure do hope we are all still here when they figure out what is up with the ES!!! Would be so awesome to know what causes it, but then again it could be differing causes for different peeps. I agree that it is something to do with thyroid or hormones or calcium processing or some sort of malfunction of our system (endocrine?). I have had several traumas to my head and neck starting at age 14 with the last one at about age 29 but I am kind of starting to wonder if it even has anything to do with that.

HighHopes! It is quite unbelievable when I think about it myself. You can’t imagine how relieved I am to not be CRAZY! When the thyroid thing was finally diagnosed and resolved I thought I was going to finally be normal. And for a while things were so much better I didn’t mind so much that I still had the ES stuff going on. But as we all know those things just won’t be ignored especially when the symptoms begin to ramp up and new ones start happening. I know there are a lot more people - medical professionals and just regular folks that know about it now. Though I will say, every medical professional person that I have encountered after my diagnosis has NEVER heard of it!!!
I can’t wait to see how your story plays out and how much more of your life you get back. Everyone here inspires me to keep pushing and keep believing that I am about to get my life back too!

I hope all of us here can start spreading the word.

The last few days have been rough due to what I believe is acid rebound. I’ve never had heartburn this constant and painful in my life. It’s interesting how it starts after I stop taking the PPI. Another challenge, but I’m in a head space to conquer.

I’m really eager to have the surgery and can’t wait for some of the symptoms to subside. But I’m also anxious . I hope it will only be good news that I have to share. 7:30 am on Tuesday, ahhh!!!

So exciting that your surgery is coming up soon! I’m going out on a limb here to say, I bet your acid reflux goes w/ your styloid (unless the other styloid is to blame). Vagus nerve irritation is common w/ ES & acid reflux is often one of the responses to that.

Please remember that you may feel asymptomatic for ES immediately post op (except for sore throat & neck, etc) then after a few days, some of your symptoms may return. The anti-inflammatories given via IV during surgery cause that effect & take 24 hrs or longer to wear off then reality strikes. Do not suppose that surgery hasn’t been successful based on this. Post op pain meds, ice & prednisone if your doctor prescribes it will go far in helping you cope in the first 2 weeks after surgery. By the end of the first/second weeks there’s a good chance you will notice some of your ES symptoms are fading or gone. At the 2-4 month mark you should be feeling pretty good. The remaining styloid may start proclaiming it’s presence more loudly once the other one is gone, but it may take a few months to ramp up or it might not do anything at all. Some people only have symptoms from one side even if they have bilateral elongation.

I will put your surgical date/time on my calendar & pray for you that day.

:blush: :pray:

kiZe6159 - There is thought that head & neck trauma, even surgery in the neck/throat area can cause elongation of the styloids/s-h ligaments. I have also had 2 major head injuries & whiplash. I’ve had my tonsils out & clench my teeth while sleeping. All of these have put excess stress into my head/neck/throat areas.

Wolff’s Law (developed by the German anatomist and surgeon Julius Wolff in the 19th century) states that “Bone in a healthy person or animal will adapt to the loads under which it is placed. If loading on a particular bone increases, the bone will remodel itself over time to become stronger to resist that sort of loading.” (Quote from Wikipedia - Wolff’s Law). This happens via the piezoelectric effect which simplified means that when a bone is stressed it develops an electrical charge along the lines of stress which causes more supporting bone to be laid down. You can imagine that when you have head/neck trauma where the bones are stressed & soft tissues inflame & apply excess pressure internally or neck/throat surgery where there is inflammation & ultimately scar tissue accumulation, that the stresses placed on the bones & ligaments in these areas could cause excess calcium (bone) to be laid down in an area where it doesn’t belong (based on Wolff’s Law).

This is one theory as to why Eagle Syndrome occurs. Our bodies are made to repair themselves & survive. Part of that means shoring up weak spots even if that is detrimental to surrounding tissues. (I guess our natural repair systems aren’t as intuitive as we’d like…).

I hope this explanation wasn’t confusing to you. Our bodies are so very complex & work to repair & survive in ways that seem very miraculous to me.

Body self repair is very interesting! They are quite the machines!

Thanks for thinking of me. I’m praying that the reflux is due to ES.

The support on this forum has been phenomenal! Thanks to you all!

Morning Isaiah_40_31
I still think we might be twins!!! I have all those same issues and I agree with your post. Our bodies can do some miraculous and crazy stuff.
Since I became aware of ES (only a few months ago), I thought my head/neck trauma was the cause, but I keep reading and then I switch over to thyroid and then I switch back - LOL. They are probably both to blame…just wish we knew!

Did you have to stop taking the PPI for your surgery? Can’t wait for your report as soon as you are able! CONGRATULATIONS the time has finally arrived…sending good vibes to you and your surgeon!


I was originally put on the PPI as the GI thought my symptoms may be due to acid reflux. Endocopy, being on meds for 30 days, and CT ruled that out. GI is trying to taper me off due to acid rebound. It’s not going well :unamused:.

The ENT surgeon instructed for me to take the PPI this morninh and tomorrow morning so my stomach is quiet for the surgery. So back to weaning after.

Thanks for the vibes!!

Is your surgery tomorrow? I hope that all goes well, & that you soon recover. God Bless x

Hi Jules!

Yes it is. 7:30 am EST. Yikes!

Thanks for the thoughts!!

Let us know how you get on, when you’re up to it… Best wishes!