Experts for post-OP treatment in Germany

Symptoms and Treatments
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Hello everyone,

I am a patient from Saxony, Germany, and am currently 4.5 months post-stylectomy. While the surgery itself went well, I am now completely without local post-op care. My main struggle is a severe, pre-existing structural problem that remains unresolved.

Three years ago, before I had even heard of Eagle Syndrome, I told my ENT that it felt like something had torn or disconnected in the upper back right side of my throat. When I finally received my ES diagnosis two years later, the specialist agreed that a disrupted innervation of the suprahyoid muscles as i suspected was absolutely plausible. Also the styloid bone had been found detached from the skull while surgery. However, I haven’t been able to find a doctor who has the specific expertise to officially test and diagnose this likely neurological issue—which is the necessary first step for gaining access to a targeted treatment.

Because of this suspected one-sided innervation failure, there is no cranial pull on that side, and the entire biomechanical balance of my hyoid bone is severely disrupted. Whenever these muscles are activated—during opening my mouth, lifting or turning my head, or even during stress and physical exertion—the hyoid bone tilts aggressively. It gets pressed onto my larynx on one side, while the other side tilts upward, constantly irritating the highly sensitive nerve and vascular zone in my throat. Additionally, the muscles on my “healthy” side are painfully overworked, and I experience position-dependent tinnitus also on the untreated left side. (ES was only diagnosed for the right side including partly ossification of the ligamentum, IJV compression and C1 contact, the left side is atypical dorsal, but not significantly elongated or ossificated)

I am seeking out to you and asking for support.

I would love to know if anyone else in this community has experienced similar innervation or nerve-related muscle issues following or prior to their ES diagnosis. If so, how and where did you manage to get this officially diagnosed or treated?

If anyone here happens to be from Germany—or even better, from my region in Saxony—and has found a knowledgeable doctor, neurologist, or specialist clinic who truly understands the complex biomechanics of the hyoid bone and cranial nerve imbalances, please share your recommendations.

Thank you so much for your support!

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That sounds really difficult, I’m sorry that you’re experiencing the hyoid bone issue… @anon30378544 has mentioned that he feels his hyoid is causing issues too, but hasn’t had surgery yet.

We have had some members who have had the hyoid bone processes trimmed when these were elongated and causing pain; are yours elongated as well, or is it completely a biomechanical issue do you think?

Unfortunately we’ve not heard of anyone having treatment for their hyoid bone in Germany, or anywhere in Europe really. (A couple of members have seen Mr Hughes in London with mixed results)

@TheDude is knowledgeable about doctors in Germany, maybe he’ll have some ideas!

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I will be at the Sverzhevsky Institute tomorrow, consulting with an ENT surgeon about the hyoid bone, thyroid cartilage, and the digastric muscle. On September 29, I also have an appointment with another ENT surgeon, Dr. Nazaryan. So, it’s possible that someone will take on the hyoid bone. I’ll let you know. Perhaps you’ll have surgery later in Moscow, in Russia.

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Thanks Jules,

I just learned today about Hyoid Bone Syndrome as a potentially related diagnosis. It is not an officially categorized diagnosis in Germany.

I do not think that my hyoid bone itself is deformed or that the ends are elongated. However, even though the ends of the bone on both sides are definitely causing the issues and pain, I am pretty sure that this is due to the rotation and movement of the bone itself and the irritation of the surroundings.

If my suspicion regarding the lost innervation turns out to be true, then there will probably not be a recovery. From what I have read, nerves can potentially regenerate, but muscles degenerate after such a long time. Anyhow, I could reach out for targeted treatment of the primary and secondary symptoms, which are plentiful as usual…

Best wishes,
Seb

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Thanks Filya!

We could keep in touch if either of us makes progress. Unfortunately, Moscow is not an option for me under the current situation.

Good luck with your upcoming appointments!

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If it is innervation that’s the issue then that is rough… some members in the US have had surgery for HBS, if it was a muscle issue there might’ve been something which could be done… @churchyardyew had surgery with Dr Dewan in the US:

Successful Clicking Hyoid Syndrome Surgery 3/6/25! - Symptoms and Treatments - Living with Eagle

There was also this post by @asm8ax about hyoid surgery where it’s mentioned his hyoid was stitched into a higher position, it might be interesting, although not really any answers !

Associated Possible Symptoms Left Side of Neck (mostly failed hyoid bone syndrome surgery) - General - Living with Eagle

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Hi Sebastian,

I saw your post and want to respond quickly. Have you already tried a Dysphagia Center (Dysphagie Sprechstunde) at University Hospitals?

In this context I’ve also heard about the Cologne Dysphagia Ambulance that could be a good adress, too. https://www.dysphagiezentrum.de/ I have no personal experience with this center, but I’d probably ask them if I were in your situation.

Hopefully you can find qualified aid for your condition.

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@Sebastian - Your mention of your hyoid tilting with certain activities makes me wonder if having your remaining styloid & stylohyoid ligament removed would help stop that problem as your hyoid may be “tethered” to your remaining styloid by the stylohyoid ligament but free on the side you’ve had a styloidectomy. Having one side of the hyoid still attached to a styloid via the stylohyoid ligament while the other side is free could be at least part of what’s causing the hyoid shift during the activities you’ve mentioned. It could be a second styloidectomy surgery would be easier than a hyoid surgery & perhaps getting the hyoid to settle would allow the damaged nerve to heal.

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Thanks so far. I was not aware that muscular innervation issues in the context of Eagle Syndrome (ES) are as rare as they appear to be based on forum searches.

I never thought I would find myself in an ‘undiagnosed’ situation again, especially after finally receiving my ES diagnosis and feeling like everything would be resolved once I was in the hands of ‘the experts’.

From what I have learned through my personal experience, ES surgery as performed in Germany is a rare and highly specific procedure that requires exceptionally skilled and experienced surgeons. However, it follows a highly standardized protocol established through years of clinical practice. The surgery itself is strictly therapeutic rather than exploratory; it follows a precise plan with no room for experimentation or further investigation of patient-specific, atypical complaints. Success is measured statistically based on symptom recovery percentages within large, abstract peer groups. While these overall numbers are positive, there remains a significant number of patients who do not achieve full or even substantial symptom relief.

In my understanding, standard medical practice is currently not equipped to functionally and profoundly investigate these complex cases. The underlying mechanisms behind persistent symptoms are rarely identified or treated.

The reason for this gap in care may be twofold: first, these cases are so rare that no standard diagnostic or treatment protocols exist. Second, there is a lack of specialized experts who are both willing and able to investigate such individual complexities within an economically viable framework. **Consequently, patients with persistent post-surgical issues are often left to navigate a medical vacuum, where their remaining symptoms are dismissed as statistical outliers rather than recognized as complex clinical challenges requiring tailored, multidisciplinary solutions.

So I am basically back to start:** Tomorrow, I am going to see my GP—the very doctor I have to thank for my delayed diagnosis in the first place. I will be presenting with the exact same persistent problem I had nearly three years ago, fully aware that after all this time, a full recovery is likely no longer possible.

My greatest fear is that I will be pigeonholed into the exact same category as three years ago and simply sent home again. That was wrong back then, and it is wrong today. But without someone to open the doors for you within the medical system, you stand no chance of getting adequate, appropriate, and targeted treatment—even if it is just palliative care at this point.

It makes me sick to my stomach just thinking about all the useless treatments I was sold over the years. They weren’t just unhelpful; they were downright dangerous and only amplified my suffering.

I have to find a doctor who actually cares about digging into my specific case, and distance myself from those who just offer off-the-shelf treatments from their corporate catalog.

I will try to get a referral for a local university hospital’s dysphagia unit, but looking at the standard treatments they offer, I fear they will simply be satisfied with the fact that I can still manage to eat and speak somehow.

The German healthcare system is obviously not built for rare diseases or complex, atypical conditions. It is highly optimized for standardized, high-volume procedures, but it completely abandons patients who fall outside the statistical norm. Investigating individual, complex cases requires time, interdisciplinary cooperation, and financial flexibility—none of which are supported by the current system’s rigid billing structures

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Thank’s Isaiah for that idea

Thank you for this insight—that is an excellent thought.

I have actually been quite uncertain about the remaining ligament myself. Prior to surgery, I was given hope that the constant tension (or ‘tug’) on that side would finally be released. But I didn’t suffer from ‘tension’ instead i suffered from ‘no tension’ on that side. Consequently I didn’t experience relief regarding this issue by the surgery; rather, it now feels like that side is ‘sagging’ or hanging loose.

On my pre-op CT scan, the stylohyoid ligament was visible and ossified about halfway down. My surgeon explained to me that the ligament is routinely left behind and usually doesn’t cause any issues. Furthermore, a major part of the bony chain is removed during a styloidectomy.

From what I understand, the procedure involves shelling out the styloid process from its surrounding tissue layers (like peeling a banana). Within this tissue sleeve, the connection to the caudal part of the ligament is severed, and the process is then clipped as close to the skull base as possible and smoothed down. After that, the tissue layers are sutured closed. This means the remaining ligament is still suspended from the tissue that once enclosed the styloid. Additionally, the posterior belly of the digastric muscle and the stylohyoid muscle (which originates at the base of the styloid) normally pull in this direction. I assume that neither of these muscles is pulling effectively anymore. Now, four months post-op—with the swelling completely gone—the ligament is likely hanging even looser than before.

Addressing the other side to eliminate the remaining structure is an idea that has crossed my mind as well. It would certainly help reduce or resolve the anatomical asymmetry. However, my concern is that if I lose the entire backward and upward pull, my hyoid bone will drop completely at the back and sit too low.

I fear that instead of solving the problem, it could just cause the hyoid to rub against the larynx on both sides instead of only one, pushing it down into the thyroid gland. In other words: I might get rid of some of my current symptoms, but potentially buy myself entirely new ones.

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That is quite the dilemma!

We have been told that the stylo-hyoid ligaments are completely detached from the styloid process when it’s removed, and if not can calcified can be left in, where the body will then re-absorb them…but whether that’s how every surgeon does the surgery I don’t know, & it is strange that this surgery rarely affects swallowing once the muscles/ ligaments are detached…

Unfortunately most countries are the same with healthcare, if you fit in a convenient box you might be lucky and have treatment, anything outside of the box or multiple conditions, tough luck!

This is so frustrating, because there are so many published research papers now about the symptoms of ES, diagnosis, surgical techniques and success rates that there is no need for doctors to deny that there isn’t a standard! So many doctors are still clinging on to the thought that ES is rare (we believe it’s not rare, just under diagnosed), and that surgery doesn’t help or is too dangerous, or that the blood vessels can’t be compressed etc. If they had the time to read current research, they would realise this is such old fashioned thinking!

I hope that you’re able to persuade your GP to listen, let us know how you get on!

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This is an excellent description of ES surgery which I have had the opportunity to see in person. I could not have described it so eloquently though.

What we have heard from experienced ES surgeons who leave a section of calcified ligament in place rather than removing it is that the body will break down the calcification & reabsorb it over time, thus, it’s felt that once the stylohyoid ligament is detached from some point on the elongated styloid, what’s left won’t be a problem. I’ve had a little trouble w/ this theory based on lack of knowledge about how much time is required for the calcification to break down & the ensuing problems the piece of calcification could continue to cause when left in place until its demise. Why not just take all of it out - styloid & calcified ligament even if it’s two plus separate pieces?

As you probably know, your hyoid bone is surrounded by muscle & isn’t delicately hanging by only the stylohyoid ligaments in your neck thus when both stylohyoid ligaments are detached from the hyoid bone’s lesser horns, the surrounding muscles will continue to help hold it in place. It’s my non-medical opinion that your hyoid won’t drop at the back if you have your other styloid resected & the stylohyoid ligament detached, however, that is a question for your ES surgeon.
Here’s a link about the hyoid bone & it’s supporting structures:

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