Hello everyone, I’m new to the group and I’m glad to have joined you on this crazy journey. I will briefly describe my case. I am a woman, 32 years old, and I come from Croatia. Last year, doctors diagnosed me with bilateral stylohyoid ligament calcification via a CT scan. I am still waiting for further tests and for a doctor to determine the final cause of my difficulties. Fortunately, I don’t have dizziness, but I have tinnitus, I have difficulty swallowing because I can feel the ligaments in the tonsillar fossa with my tongue, I have discomfort in my chest, and I have a feeling that my neck is stiff. How do you cope with it, and did you feel relief after surgery?
Hi @Sara32 - Welcome to our forum! I’m glad you’ve joined us but am sorry for the reason you did!
Here is a link to a post about ES symptoms written by @Jules that will give you a lot of information about the symptoms ES can cause, & what we’ve learned may be the reasons for them.
When a person who has ES has their styloidectomy(ies) done by a surgeon who is very experienced w/ ES surgeries, the outcomes are usually good giving relief from the symptoms or at least noticeable decrease in them. The other thing to note is that it can take a year for the nerves that are irritated by the styloids to recover. Usually by 6 months after surgery, there is very good progress in nerve healing, but some symptoms may hang on for longer. That is to say that recovery from a styloidectomy does not usually give instant results in stopping symptoms, however that doesn’t mean the surgery hasn’t worked.
We have the names of two doctors in your country who do ES surgeries but we don’t know much about them. In case you haven’t seen them on our Doctors List, I am including them below. Many of our members have had to travel quite a distance & in some cases outside of their countries to see doctors who are experienced ES surgeons. If you choose to see either of those listed below, I hope you don’t have to travel too far.
•Dr. Vladimir Bedekovic, KBC Sestre Milosdrnice, Zagreb
•Dr. Miroslav (Mirko) Ivkie, KBC Sestre Milosdrnice, Zagreb
Thank you for your help 
I will try to contact them, although I don’t think there’s much luck to be had in our country. I’ve heard a lot of illogical things from their side, and I was told that we don’t have a single specialist in that area, or that they have never performed such procedures. So, I will be careful. Yesterday I found out that I have elongated/ossified ligaments and that my internal jugular veins are compressed by loops of the internal carotid artery. I hope the procedure will succeed in solving the problem. Thank you all for your support. You guys are a great team:hugs:
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Hello @Sara32,
You don’t need to contact these doctors in Croatia.
I’m from Sarajevo, and I went to see Dr. Vladimir Bedekovic in a private clinic in Mostar.
I showed him a 3D image of my styloid processes, which are 5 cm long, and he replied that it couldn’t cause any problems, because that’s my anatomy that was created 25 years ago.
He wrote only one sentence on the report: “There is no problem in the ENT area.”
So I have a bad experience with this doctor and I don’t know how he got on this list, because I was exposed to unnecessary travel and financial expenses because of it.
I also researched Dr. Mirko Ivkic
I corresponded with a member of this group who went to him, also to no avail, because he says he doesn’t deal with Egle syndrome.
Another member of the group @Zdravka, who is unfortunately no alive, had a very bad experience with this doctor, as she felt worse and was in a lot of pain for years after the surgery.
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Thank you so much for the information you shared. It means a lot to me, as I don’t have to seek out their opinions now. In Croatia, I’ve seen about 8 doctors. Of those, 3 weren’t even aware that Eagle syndrome exists. They just look at the CT scan, measure the ligaments, and don’t check if there’s any compression of the veins or nerves. So, the diagnosis remains “a possible cause is Eagle syndrome,” or they simply tell you that all those symptoms aren’t caused by Eagle syndrome. Unfortunately, it’s pointless to continue down the same path. Have you managed to solve your problem and find the right specialist?
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I haven’t solved the problem.
For now, with the help of medication and physical activities in a warm pool, I can cope with the problems and life limitations.
I was offered an operation by Dr. Kamran Aghayev, a neurosurgeon in Turkey, where he would shorten the styloid processes and shave the transverse processes of the C1 vertebra that compress the internal jugular veins.
In addition, I have additional disorders at the junction of the skull and C1, and many other problems in the spine, so I am afraid of the reaction to all of this after this proposed operation.
I am still in the phase of many examinations and consultations at the clinical center in Sarajevo.
In our region, you will not find a doctor with extensive experience in operations on Eagle syndrome, but it is good to be as diagnostically processed as possible.
The closest is Dr. Jakub Bargiel in Poland, who only performs styloid removal.
In Turkey, Aghayev specializes in vein decompression and styloid removal.
Since you mentioned the problem with the veins, you can send him the findings and the contact, so he will call you via the WhatsApp application and give you a free consultation.
What tests have you done and have you had CT angiography of the neck with venography (CTA with venography) done?
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Thank you for the advice. I read your story and I really admire how you manage to maintain such a condition. Well done!
Dr. Aghayev actually just gave me his opinion yesterday, which I described in the post above. He suggested resection of the styloid processes and repositioning of the carotid arteries to release the jugular veins from compression.
It’s interesting that I only feel occasional symptoms (mild ones), maybe once a month, and then I take ibuprofen to relieve the discomfort. Otherwise, on a daily basis, I only feel that the processes are mechanically bothering me in my throat.
The only thing I’m afraid of is that I might have more problems if they are removed than I have now. I’m not as knowledgeable about it as you are, so that’s the only thing I’m afraid of. Is there a risk of having more problems after the procedure?
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Of the tests, I only did a CT of the paranasal sinuses, and the doctors diagnosed me with Eagle’s syndrome based on it. Then they sent me for an MRI of the brain. That’s all I have.
HI, Sara!
I’m from Serbia here.
Also considering Dr Aghayev at the first place if he can perform all manipulations needed. In Serbia was lucky to see surgeons who all agrees my styloids have to be removed but for now was proposed only a regular styloidectomy while I have severe vascular symptoms. We have several cranio-fascial and skull based surgeons who technically can do this but can’t diagnose what exactly to perform. So, I’m keeping terrorising surgeons from VMA hospital.
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By the way, how long does it usually take to make an appointment wit Dr Aghayev? I’m trying to schedule it for already a month and very disappointed with the assistant bc he always promise to find smth in 2 days on next week, and here I’m sitting waiting for a month without any answer expect to come to their office.
Thank you for the information. It’s good to know that doctors in Serbia are familiar with the syndrome. As for Dr. Aghayev, I contacted him via email and sent him the documentation for review. He got back to me with his opinion very quickly. Try email first, and once he reviews it, you can easily schedule an appointment at his office😊
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He replied too email too very quickly but unfortunately not very informative. And my symptoms are very severe to travel just for a consultation.
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If you speak English fluently, try calling him or scheduling an online consultation. I’m sure he would listen to you. When I contacted him, I got a good impression; maybe he was just busy at the time. Give it a try, it can’t hurt
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I don’t speak English, so I have to limit myself to sending emails. But I am persistent because I want to try to solve the problem as soon as possible.
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@Sara32 I’m glad that you’ve had a consultation with Dr Aghayev, and I hope that if you decide to have surgery with him he’d be able to untangle the IJVs. It could be that you’re not getting symptoms of IJV compression at the moment because other veins (they’re called collateral veins) have taken over and are compensating. The body can cope like this for a while, but then often gets to the point where either the veins which are taking the blood flow swell and cause pain, and you may find that you suddenly start getting more vascular symptoms…
@tesla001 I’m very sorry that the doctors weren’t helpful, we only put doctors names on there when we’ve been given them by members who have seen them for surgery, but I’ll take them off if this has been given to us wrongly.
I’m also very sorry to read about Zdvraka, I remember her being on the site for a while 
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Thank you, Jules, for the explanation and support. I also hope I will manage to solve it because I can’t wait.
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@tesla001 - I’m also sorry to hear about @Zdravka as I also remember her. I hope she didn’t die from a complication from ES. Also I’m sorry the 2 doctors’ names we had for your country are not good resources for ES. Thank you for letting us know.
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Does your tinnitus go in rhythm with your heart beat?
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In my case, it’s about ringing in the ears, but only occasionally, depending on the position. It sometimes happens when I make sudden movements or when I’m lying down with my neck slightly bent; that’s when the ringing starts.
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@Bc2 - Have you had vES surgery yet?