Finally! I mean FINALLY!!! I found that thing behind my jaw called a Styloid Process. Further research and I was sure of ES. Just had a contrast CT that confirmed what I knew was absolute. So here I am. Mine was a long, hard and painful journey. Same as I’ve been reading on all of your posts.
I cant believe the variety and consistency in the pain patterns.
We need to blow our voices out to get attention on this syndrome. But that’s for another post on another thread.
The HYOID BONE:
I haven’t seen much, in fact maybe no, discussions of the Hyoid Bone. Before I found the Styloid I found the Hyoid. I showed the whole Stylohyoid region as a source of pain to my Doctor, even mentioned the Hyoid directly a few times, but he scheduled me for a CT for soft tissue.
I waited 3 weeks to get the scan. Through constant research, and in anticipation of having an image I could take around until somebody saw what was going on, I finally discovered the Styloid Process. After tirelessly digging through images and medical abstracts and papers from the best journals, I hit my symptoms perfectly to a T. Eagles Syndrome. Now the CT I was waiting on would absolutely show the elongated Process on my left side. I just got the results of that scan last Wed. I have bilateral ES with presentation on left side (3.8mm)
I was so pumped up after finding Eagles I forgot about my Hyoid. Eagles should not present a click in your throat when swallowing. Now diagnosed ES, I still have the click. I’ve read 2 studies that concluded Hyoid Bone trauma does lead to a higher instance of ES. Or at least elongated Styloids.
Has anybody else thought about or researched your own ES with possible Hyoid Bone implications causing your ES or other pain and life regularities (swallowing, speaking…)?
I’d like to know so that I can ask my doctor to look more closely at the Hyoid.
Thanks anharris. I hadn’t seen clicking as a symptom, but it seems to be a test they perform to confirm a broken Hyoid. Either way, I’m hopeful it could be the ES. Did the surgery on the left resolve any of your symptoms?
Yes - the clicking I mentioned on the right used to be bilateral. I also used to have bilateral tinnitus and now it’s only in the right ear. Everything else is still present, but given that they are whole throat symptoms I’m not surprised.
We have had a few members with more hyoid bone issues rather than elongated styloids, & several who’ve had calcified stylo-hyoid ligaments which are either calcified from the hyoid end, or calcified the whole length. One member particularly has clicking problems- she had the ligament calcified from the hyoid up. Surgery helped, but but it didn’t completely disappear from what I remember.
If you search for hyoid bone syndrome, it’ll come up with some discussions.
It’s certainly worth checking that the hyoid bone processes aren’t elongated if you see an experienced doctor, & making sure that there’s no calcification anywhere on the stylo-hyoid ligament too.
Did you end up having ES surgery? If so, who did your surgery? If not, do you have surgery scheduled or are you still looking for an ES doctor? Also, did you get your hyoid bone checked for abnormalities?
So I did ask my head n neck doc to look at the entire Stylohyoid region in a CT scan. Saying from the process to the Hyoid bone. He felt a lump where I told him I thought was an elongated Styloid. He ordered a CT thinking it was cancer. Do they ever listen? They are so ignorant of anything that isn’t prevelant. When the results came back he started explaining Eagle’s and I cut him off and said yes that’s why I went to you. He had no recollection of me mentioning anything about Styloids and Hyoids and ligaments and misdiagnosis of TMD. He felt a lump…lump means cancer. CT for cancer. Luckily, they found the Styloids. However, no mention of Hyoid. So to answer your 1 question with a lengthy pre amble, I will have to ask the Surgeon what he noticed about the hyoid. I’ve been waiting since early last month for my consult with him next month. The wait has been dreadful, but at least I see some light.
What a journey! I’m sorry your doctor didn’t take better notes so he could recall your previous conversation about the hyoid & ES. I don’t know if you’ve seen That we added an ES surgeon in NYC to our doctors’ list - Dr. Delacure. If your doctor fails you, & traveling isn’t out of the question, you could contact Dr. D. Perhaps you should anyway for a second opinion. (Hopefully that’s not who you are seeing!)
Please keep us posted as to what you find out. I’m sorry you’ve had to wait so long for further clarification of your CT scan.
It has been a journey. Trying to stay patient. I’ve made it this far with no hope so happy to find this little sucker.
The intensive acupuncture treatment I went through unwrenched all of the sourrounding muscles that had been compensating for the pain for all those years. Without those tight muscles supporting the affected area there is more strain on my tendons at the base of the skull, seemingly running down to the base of my spine, but oddly, off center where I don’t believe anything should be connected out there.
Those muscles unwrenching during acupuncture (what a truly moving experience) uncovered the Stylo region to me. It left the area at the elongated point of the Styloid process open to the touch, and hence, noticeable pain when touched or pushed on by muscles during head turning. A few hours online studying abstracts, anatomy drawings and medical imaging and I finally discovered the root of my jaw pain they said all these years was TMJ.
Regardless, I’ve been using my tongue and jaw as much within the normal expected function as possible since. This is straining my neck muscles even more because they’ve had little use other than to just cover and protect the obstruction while the rest of the neck muscles picked up the slack.
So doing this now for 2 months is taking its toll. Base of my skull on the same left side can really flare up and start screaming at me. I noticed a lump at the left base of my skull that certainly hurts when pressed. The tendons there have felt quite strained and this has all been getting noticeably worse by the day for the last 4 or 5 days. The only way I can describe it is it feels eerily similar to The Eagle. Feels like whatever ligament is up that way is also fighting me on moving. If I move my head forward it’s like I’m attached to something. I’ve only felt this on the left side Stylo before.
I’m pumped full of different head meds to try and get through the day without losing it. My head just rings and rings and then the blood rushing sounds take over for random spells. It’s like the nerves deep within my brain have tentacles stretched out to the skull and are open and raw. Every nerve swipe across the inside of my skull is like a hot wire straight through the brain. I can focus it down out of the brain to the actual area that hurts, and when I do, it hurts. Really hurts, but still better than what happens in the head.
I believe that I’ve also gone and exposed my right elongated Styloid (bilateral). That is beginning to click with certain jaw/neck motions. It’s not painful, but I want that side removed now too. My theory is that once the longer, left side is gone, the right Styloid will begin the process all over again because it would then impede full jaw function on my right side.
So this doc I’m waiting for is not aware I will definitely want both sides out. Hope that news goes over well. It’s hard to keep going. The back ache between the blades. The neck and jaw. I literally always believed my tongue was abnormally large and that’s why I could’nt speak, breather or eat properly. I have permanent scars on the insides of my cheeks from always biting them.
I am so hoping this doctor can get these out of me.
Thank you for the thorough update. Part of your symptoms description makes it sound like you could have Internal jugular vein (IJV) compression - the wooshing/blood rushing & ringing you get are in line w/ intracranial hypertenstion (IIH). The pain in your neck & shoulders is likely coming from the accessory nerve being irritated & the vagus nerve is often the culprit for the skull base pain & also neck pain especially radiating from the skull base,
What you’ve said about getting tight neck muscles to relax & then having a burden put on other neck muscles which are tightening up makes sense. Also, the conclusion you drew about having one styloid removed then having the other one kick up & start being more symptomatic is a scenario we see repeatedly on here. It’s hard to know which styloid is causing what symptoms until one is removed. Usually the symptoms that remain after 3-6 months are related to the remaining elongated styloid even possibly those that occur on the side that’s already been removed. Crossover symptoms are known to happen.
The clicking you get when you move your head could indicate you have calcification of the stylohyoid ligament on your right side. Clicking is usually noticed when swallowing & almost always indicates s-h ligament calcification. It would be worthwhile asking your doctor or the radiologist if your s-h ligaments show signs of calcification if you don’t have a 3D image where you can easily look for yourself. If they are at all calcified, the ligaments need to be removed as well as the styloids. They play a minor role in swallowing so will not be missed when they’re gone.
Sleeping w/ your head elevated can be helpful w/ the brain symptoms & ice may help your neck & shoulder area - 15 min on & at least 45 min. off. If ice doesn’t help, try heat.
Interesting thought about your tongue being larger than normal. For years, I’ve had intermittent trouble w/ biting my cheeks, but for me it’s a function of my teeth & jaw joints being out of alignment. I’ve had some teeth filed, crowns replaced & some really good chiropractic jaw work done that has made a big difference. Unfortunately, the chiropractic care isn’t a permanent fix. The chiro adjustments need to be done monthly & w/ COVID that isn’t happening.
I hope your appointment is coming up soon & that he’s on the same page as you are. Advocate for what you want in a patient & positive way. I’ll pray that you’re able to make progress on this front soon.
Thanks Isaiah. Today has been an especially tough day with symptoms. I dosed, laid down and just wrote everything I was feeling. Most of it I honestly thought you’d just write me off. Not only did you not write me off, but you gave probable causes for all of the crazy symptoms as well.
I do have to say though after reading the detail about the complexity and multitude of affected areas I’m starting to think this surgeon might back out, or at least not do both sides at the same time. You haven’t discouraged me, but I might start looking for other options.
I appreciate your time and effort with this community. Appt is on the 12th. Full 3 months after diagnosis. But covid changes all timelines. I’m hoping I get the surgery and not too far out.
I’m so sorry, I’m not techy so can’t help w/ the CT disc issues. It sounds like you can’t see the images or get them to load onto your computer. Some medical software used for the CTs does make it a challenge to upload the images to our computers. In my case, the diagnosing ENT had the radiologist include four 3D images. He put them up on a screen in the exam room where we met, & I took pictures of them & put them on my computer from my phone. That’s all the info I have from my CT. I hope someone else from this forum can be more helpful. If you are able to download the images & want to make slices into 3D - here’s the link for doing so: Making Your Own 3D Images from CT Scan- 3D Slicer Tutorial
As far as getting both sides done at once, that’s a bigger deal. Most surgeons won’t do both at once but require two separate surgeries. This is because the post op throat swelling can be dangerously severe. We’ve recently had several members who have had successful external or intraoral bilateral surgery, but the recovery is very painful & can take awhile longer for good results to appear. On the other hand, w/ separate surgeries, you do go through recovery twice. If your surgeon is willing to do one at a time, then do it that way. My second surgery was much easier to recover from than my first, but that is also not universally the case. I’m glad, though, that I didn’t get both out at once.
Thanks again. I thought it would be better to do both at once so thanks for the info. I’ll stick to the one, but leave the door wide open for a 2nd one if need be, and I’m quite sure they’ll be a need be as my other side is 3cm. With the left being 3.8, that dysfunction occurs first. Once that’s gone Dysfunction will start occurring at 3cm on the other side. Also think the right side may be part of the whooshing noise and helping to compress that circulatory area and nerves.
I walked into that acupuncture on my last legs. Everything hurt. Legs were collapsing under me. Had no appetite. Lost 40 lbs in 12 months, unwanted. She brought me back from the dead, but the root pain is exposed and excruciating not to compensate. I know now why my body did compensate, subconsciousely, for all those years. There was plenty of pain for sure, but this is now all straight up, pure unimpeded nerve pain that resonates like a shockwave up and down the entirety of the spinal cord. But bottom branches out to my right about 2cm at the top of my hip bone and the pain stays there straight to the bottom of my pelvic bone. So really doing what I can until I can get on a table.
I can’t tell you how much I appreciate your guidance, and I commend you for your activism in helping is try and survive this sickly twisted condition.
So glad to be here to help! I’ve been where you are in some respects. Though my symptoms were a bit different, I was debilitated by them. Having both styloids & stylohyoid ligaments removed did give me my life back. It did take about 18-20 months of recovery after my surgeries but it was time well spent!
I began to exercise gently at about 2 weeks post op but that was a little soon. I ran in a 15k race 6 weeks after my first surgery which was DEFINITELY too soon. That little escapade set my healing back a bit. I wasn’t working during that time but could have gone back to work in the two week post op time frame, perhaps part time though. By a month post op, things were much better & by two months I felt pretty much like my old self except for some residual nerve pain which did resolve over the next 6-10 months.
Oh I’m sorry @Isaiah_40_31 I was unaware of the fact that you’re a mad man! I can undoubtedly guarantee I will be attempting no 15k, 5k or even 1 or 1/2k anytime soon after the surgery. Though I’d be open to trying if surgery is a great success
That was 6.5 yrs ago. I’ve definitely slowed down now. Beginning to have to acknowledge my age. The ol’ body just doesn’t recover like it once did. I’ve given up running & now hike instead. Sometimes it’s farther than I should but I just love pushing myself. I guess it’s those darn endorphins!!
I hope you feel good enough after surgery to get back into activities you’ve let go of because of your symptoms. It’s so awesome when you realize you can!
