thanks for adding me to the group, I was following your forum for a while.
I´m actually not the person with symptoms, it´s my wife, but as she´s facing such a hard time, I´m writing you here.
It seems that my wife (early 40´s) has a “kind of” eagle syndrom, but not the classical one with the elongated processus, but first things first…
Her symptoms (occur exclusively on the right side, are present almost permanently with varying intensity):
Foreign body sensation, stabbing, pressing in the area of the right lower jaw up towards the ear, sometimes severely painful (hardened cord palpable in the area of the right lower jaw/deep base of the tongue).
Foreign body sensation can sometimes be described as wandering and moves in an area between the base of the tongue and the submandibular salivary gland.
Symptoms worsen when turning the head to the right and/or upwards.
Difficulty swallowing, feeling of resistance or swallowing a foreign body. Swallowing can only be triggered subjectively on the left side (FEES was unremarkable).
Noisy tinnitus, position-dependent.
Clearing throat and coughing on the right side.
Sometimes straining when speaking for extended periods.
Sometimes difficulty moving the jaw/hard food is sometimes difficult to chew.
Muscle cramps in the base of the right tongue extending into the neck in the context of other symptoms.
Dizziness, feeling of a dropping bloodpressure. Circulation
Recurring small white “spots” exclusively in the right throat area and right base of the tongue
The symptoms worsen with the onset of menstruation
Seh has seen lot´s of Medics and an ENT mentioned Eagle´s Syndrom a few weeks ago, but dropped this idea as the Scan is not showing a elongated processus…
We had a consultation with a german Expert (Dr. Heim), and this person was the first one ever, capable to explain early all rootcauses of my wifes symptoms. He makes a very experienced and competent impression and seems to have a great understanding of this kind of disease.
His working diagnosis is a disorder/hardening of the styloid ligament (pertially visible in the Scans on both sides, while only right causes problems). He reports that it is not always clearly visible on a CT scan that someone is suffering from Eagle syndrome.
Due to my wife’s very clear symptoms and the clear connection to the anatomical region of the ligament, he recommended exploratory surgery with transection of the ligament.
Surgery is planned in 3 weeks.
Even if this procedure offers some hope, it remains only an attempt at treatment, and my wife is scared that the situation could worsen further after the procedure.
Does anyone here have experience with this “uncommon” ligamentous condition and can share their experience?
We´d be super happy to get some support from here, as our family (3 Kids) is going through a very tough time since nearly 2 years…
@Winmag - Welcome to our forum. I’m very sorry to hear how your wife is suffering but am happy for you that she saw Dr. Heim, and he is willing to do surgery to shorten her styloid/remove the calcified stylohyoid ligament. We’ve had quite a number of German members who’ve wanted to see him & have him do their surgeries but were told he is no longer doing ES surgeries so your news is welcome as it sounds like he is doing them again.
Can you add a picture like the last one you posted except of the right side showing the 3D sagittal image w/ the styloid. It would help me better understand what her right side looks like. I can see the left styloid is very small and there is a little calcification of the stylohyoid ligament there, too.
Your wife’s symptoms are all among those that have been noted on our forum as being caused by ES, & in most cases, the symptoms are reduced or completely go away over some months after surgery to remove the styloid. Dr. Heim has a very good reputation for producing good results when he does ES surgeries so your wife should benefit greatly from the surgery he does for her.
Surgical recovery can take time and is not linear i.e. symptoms will come & go over the 2-12 months it can take for the irritated nerves to heal completely. Your wife will likely be tired for a month or two after her surgery, but her full energy will gradually return. I think our bodies slow down during recovery to force us to be less active so the energy can be put into healing.
Here are links to two posts that will be helpful for you to better understand the causes of ES symptoms & why surgery is the best option for recovery from ES symptoms:
It’s certainly very visible from the back- Eagles Syndrome is defined as either elongated styloid processes and / or calcified stylo-hyoid ligaments which cause symptoms, so by that definition it is ES… We have had members who ‘just’ have calcified ligaments and not elongated styloids, so she’s not alone.
As long as your wife is having surgery with an experienced surgeon, which she is, and he monitors nerves during surgery, then the risks are less and the outcome is hopefully more likely to be successful. Unfortunately, no surgery is without some risk, & no doctor can guarantee that it will be a complete cure, so most of us get to the point where the symptoms are affecting our quality of life so badly that we’re happy to take the hope of a cure! It sounds as if your wife is at that point? And again unfortunately, there is no other cure, so it could well be that leaving the calcified ligament in as it is, it will keep on rubbing on the nerves and worsen her symptoms, possibly even causing permanent damage.
There are lost of success stories on here which you could search for to encourage you both; @Isaiah_40_31 & myself had successful surgeries a few years ago. Certainly if it hadn’t been for the support & info I got from this forum I never would’ve been able to have the surgery, I was feeling very ill before I had it done & I can honestly say I’ve got my life back.
So you could check with Dr Heim to see if he monitors the nerves- the facial nerve is very delicate and easily damaged, so is often monitored in surgery to ensure it’s not being stretched too much. And I’m presuming that it will be external/ trans-cervical surgery rather than intra-oral, as the surgery is usually safer & has better outcomes if done externally.
I hope that you can find enough info on here to give you both confidence about the surgery! And great that you’re such a support to your wife
@Winmag - I completely agree with everything @Jules wrote. As she noted, we both had good outcomes & were both at a point where our symptoms were bad enough, surgery felt like a welcome option.
It sounds like you know your wife’s surgery date. If you don’t mind sharing it with us, there are a number of us who will pray for her & for Dr. Heim on that day in particular. I’m really glad your wife is in such good hands surgically. I’m sending a gentle hug to your wife She should feel better once those calcifications are gone.
Hi there, besides the focus on the calcified Ligaments, a friend of us (retired ENT) checked the pics again and said that Hyoid bone seems fractured and there is a little bone splinter „hanging down“.
This could contribute/explain some of the symptoms too.
I’ve seen that there have been a few cases here with a fractured hyoid too.
The hyoid doesn’t always fuse, so sometimes there can be small gaps between the body & the greater horns/ cornu. I’m not sure about the bone fragment your friend saw, it’s worth asking about but I thought perhaps it was an artefact? Unless it’s a bit of the thyroid cartilage showing up?
I agree with @Jules assessment that all hyoid bones don’t fuse. The little bit of calcification you see below the hyoid is most likely either an artifact in the imaging or a bit of calcified thyroid cartilage.
I also agree that mentioning this to either Dr. Heim or Dr. Martini would be a good idea so you can get a medical doctor’s opinion.
I see no major change vs. the one from a year ago. The left one seems to have gotten slightly thicker and the right one indeed seems a to have a steeper angle and appears to be a few mm deeper vs. the left one.
Both calcified elements are around 12-14 mm in length (not so easy to measure accurately).
Happy to get your impression and again big thanks for your support here!!!
I appreciate that the 4th picture shows the difference in the angle of the two calcifications. The steeper angle of the right one plus it’s slightly longer length could be what’s making that side worse. I had one styloid that was shorter & thicker & growing nearly straight down. The other was more angled, longer & thinner. In my case the more symptomatic one was the more angled one.
I think your wife has a good case to present to Dr. Martini.
She should feel better once those calcifications are gone.
