My story - Help and Opinions needed

[gramos]

Hi,

I am Gramos, male 33 years old living in a small country in Balkans/Europe called Kosovo. I worked as a software developer since 2013.

On March 20th while trying to sleep, I felt my heart pulse increased, and kept increasing up to 180 bpm and also blood preasure TA 170/100. So after it, I ended up on urgent care. The heart examinations with EKG and Holter looked OK with no signs of something serious, after tons of further examininations such as blood tests, MRIs, CTs, angioCT and specialists visits, found these possible causes:

1. Elongation of the styloid process ( Eagle Syndrome )

2. Hietal Hernia of type 1

3. Some neck issues as loss of cervical lordosis and Cervicothoracic Scoliosis

I visited different doctors about the Eagle Syndrome if that is the main cause and the opinion is split in half pro and contra regarding the surgery. Cardiovascular, Neurologist, Neurosurgeon, ENT etc. 99% of them either did never hear about ES or they are convinced my symptoms are not related to it, except one cardiovascular surgeon, who happens to know about it and also has done 12 operations so far, he said that I need operation at least on my left side. His colleagues say the opposite and accuse him for being interested only to take the money. I am really lost in this situation.
Considering that this is a very rare disease and doctors are not very experienced with that especially in my small country as mine. I am looking for help and I am very glad I found this community.

Previously for couple of years I had a strange pain on back of my neck but It mostly disappeared after using paracetamol, this year I also experience weird jaw pressure/numbness on the sides but it doesn’t stay long.

During the month of March and April I felt very different symptoms everyday such as dizziness, a compressed feeling on the back of the neck, body weakness, muscle weakness in legs, maybe neuralgia, loss of appetite where I lost nearly 20kg in two months etc. The chef complaint was tachycardia and also weird episode of pain which starts on back of the neck like something is pinched or blocked, it continues on spinal cord where I feel some sort of heat down to the last vertebrae and from there I feel pressure and weird sounds on my intestines. It is associated with difficulty breathing. It is usually resolved within few minutes, but during that time I feel like I am dying. I try to practice some breathing techniques which I learnt recently it seems to help a bit.

These recent weeks I am feeling a little better, with less episodes of increased heart rate and better gastro-intestinal state I am able to eat a bit more, and I think I stopped losing weight, but I keep experiencing very different symptoms every day.

My current medication for heart rate is taking beta-blocker Corvitol 12.5 mg in morning and after dinner.

For stomach I take some other standard medicines.
Neurologist described to take Citalopram ABC.
Also I am going in Phisiotherapy/Osteotherapy/Chiropractic sessions. I am very afraid that I may cause some harm but the PT is also naive or convinced that ES is not a problem.

Here are some screenshots I took from my examinitations.

And here are the links for the examinations done until now.

Angio CT

Head And Neck MRI

Neck CT 3D

Please let me know if you have any questions.

Thank you!

[Thans]

Hi! I had some of your symptoms. Both your styloids look long… can you get a better picture of where they extend (side view of first picture)? Do you know how to identify the styloids and measure from that software? Regardless, the fact that you have symptoms means it’s likely they’re pressing against nerves, perhaps some vasculature. I got my right sure out and will be going for the left in August. I had significant relief from removal.

[Jules]

Your styloids are a little longer than average, but they’re quite angled which can cause symptoms as well…the Vagus nerve if irritated can cause cardiac arrhythmia, and if the styloids irritate the carotid sinus this can cause cardiac issues too. I’m not knowledgeable enough with the scans to comment on the blood vessels your styloids are close too, but on the last image it looks as if there could well be irritation if not compression by the styloid process. There looks like calcification (on the left side of the first image) of the stylo-hyoid ligament, unless the styloid has been fractured at some point. Your hyoid bone processes also look quite long and as if they could be touching blood vessels too- this is only an amateur opinion, just a few pointers for you to discuss with your doctors!
Some of your symptoms sound like common ES ones, but some less so (the weakness in your legs, pinching of your spinal cord etc could be more to do with your other neck problems). Here’s a link to the info about common symptoms & also Vascular ES:
ES Information: Common Symptoms And Possible Explanations For Them - Welcome / Newbies Guide to Eagle Syndrome - Living with Eagle
We do also have some info about surgery & in this section there’s a list of questions as a guide to ask your doctor:
ES Information- Treatment: Surgery - Welcome / Newbies Guide to Eagle Syndrome - Living with Eagle
It’s good that you have found a doctor who knows about ES and is willing to help you, if you choose to go ahead with surgery. Unfortunately it’s not possible to say which symptoms are being caused by your styloids & which aren’t- the only way really to tell is to have the surgery and see what resolves, but equally there are risks with surgery so it shouldn’t be undertaken without thinking it through. I wish we could give you a clear cut answer, but it’s a personal decision based on your quality of life with the symptoms you have…
I do strongly suggest though that you are cautious about seeing a physiotherapist/ chiropractor if they’re not knowledgeable about ES, given the length & position of your styloids it could damage a blood vessel or cause more irritation to your vagus nerve if that’s being affected.

[Isaiah_40_31]

@gramos - I’ve labeled one of your images to help you see what @Jules is talking about in case you aren’t sure. I agree with everything she said. To clarify about your right styloid, the styloid itself is very short, but there is a calcified section right below it which could either be a section that broke off the styloid or it could be a section of calcified stylohyoid ligament. I labeled it as calcified stylohyoid ligament.

I’ve labeled the greater horns of your hyoid bone, too, as they do look quite long. The third image you posted which is a profile of your left side also shows the greater horns of your hyoid lookin very long. They can cause many of the symptoms the styloids/calcified stylohyoid ligaments cause, plus some others.

In addition to the heart rate symptoms the vagus nerve can cause, gastrointestinal problems can also be from an irritated vagus nerve thus it may have played a role in your appetite loss.

[Jules]

Thanks @Isaiah_40_31 for labelling those, beyond by abilities

[gramos]

Hello @Thans, I am not experienced with those tools. Can you tell me which symptoms exactly you had and which ones improved after surgery ?

[gramos]

Hey @Jules and @Isaiah_40_31 , thanks for your reply, and sorry for not replying faster but my condition currently is allowing such. I am very confused with how to proceed further. I don’t have the typical symptoms most members have, and initially I am leaning more to explore conservative treatments (if there are any). Even though my pulse rate still hits me hard time to time, especially during night. This makes doctors think I am suffering anxiety, and I am taking therapy for it since one month with very little improvements. Personally I think its not anxiety, but what else can I do at the moment’?. I decided to stop PT for now, since I started to have more neck pain and muscle stiffness, to the point that I thought I am having a stroke. Doctors checked me only with Echo and they say my blood is circulating properly to the brain. I have another appointment on Monday with one of the most famous Neurosurgeons in the region and hopefully I get an answer. Thank you guys.

P.S I hope someone experienced with reading MRI, CTs can have a look on the links I posted so I can get some ideas on what to explore further. I saw there are some members who have pretty good experience on reading examinations.

[Jules]

I hope that your appointment on Monday is more helpful!
Here’s a link to the info about treatments; there are some things which can help make the symptoms more manageable, although surgery is the only ‘cure’ for ES:
ES Information- Treatment: Pain Relief - Welcome / Newbies Guide to Eagle Syndrome - Living with Eagle
Heat and or ice can help, sleeping propped up at night helps some people, some members have found blood thinner medications helpful with vascular ES when the jugular veins are compressed, and some have found wearing a soft collar does help.
Let us know how you get on Monday

[Isaiah_40_31]

@gramos

I don’t have the typical symptoms most members have,

The longer I’m on this forum the more I realize, there isn’t truly a typical set of symptoms for ES. I’ve been on here for 9.5 years & continue to be amazed at the variety of symptoms & even new ones that are mentioned on this forum. Since you may also have hyoid bone syndrome, you could have some symptoms that aren’t often or ever mentioned w/ ES.

I’m glad you have an appt. on Monday. Our members who are good at reading scans seem to be taking a break from the forum for the moment, but hopefully one of them will see your request & take a look at the links you’ve posted.

Please let us know how your appointment turns out.

[gramos]

Hey guys, wanted to give an update on how the appointment with the famous neurosurgeon went. Initially I told my story, he said my styloid processes are too short to consider surgery and my chief complaint which is sinus tachycardia is not related to it. So I must find the problem related to something else, meanwhile I continue having panic attack associated with spinal cord heat sensations.

This surgeon said he has done two surgeries in his whole carrier and he is very old now with lots of experience . Both cases with fully calcified ligaments, so I got the impression that he only does surgery for extreme cases. Same output I got previously from another ENT who specialized on skull base, he said surgery is done only when there is constant pain or people can get their jaw stuck. Even though he did not have any experience with ES, he just talked from theory and usual practice. Also he frightened me that the surgery is super risky with high possibility of disability therefore it should be the very last resort. From this forum I learned lots of success stories and with very little complications, I don’t know what was he referring to.

So guys, I am super lost now and don’t know what my options are really. I am just trying to stay positive and get my medications which are beta blocker and anti anxiety pills.

[gramos]

@Isaiah_40_31 I tried to check what could be the Hyoid bone syndrome but from what I read I don’t have any of those mentioned, can you provide a link which has any more info, i tried to mention this to the neurosurgeon but he completely ignored me.

[Isaiah_40_31]

I’m really sorry the neurosurgeon you just saw waved you off like that. In spite of his years in medical practice, he clearly doesn’t understand that the styloids don’t need to be long to cause problems. This is a common problem even among doctors who are more experienced w/ ES.

Obviously having surgery with an experienced ES surgeon somewhat reduces the risks of the surgery. It may be that the first surgeon you saw is just trying to make sure that you really feel bad enough to want the surgery so he is using a “scare tactic” to get you to put it off for awhile. I would continue to see him & pursue the possibility of surgery as your symptoms do sound miserable.

I agree that your worst symptoms aren’t among those caused by Hyoid Bone Syndrome. Our member @CJsBattle had Hyoid Bone Syndrome (HBS) so he would be a good resource for information about it. You can send him a private message to ask more about it, or perhaps he’ll reply here since I’ve tagged him. You can also search for his posts on this forum by clicking on the magnifying glass image in the upper right of this page & typing @CJsBattle into the search box.

I sure wish I could help you more, @gramos! The best I can do suggest that there are a couple of doctors on our list in Croatia & Slovenia whom you could contact, but they’re pretty far away from you.
Slovenia:
These two names were listed by our member Eagle. We don’t know if they helped her with ES surgery:
•Dr. Zobna ambulanta Zlata Gasparini, Dr.Dent.Med., Dellavallejeva ulica 3, 6000 Koper - Capodistria, Slovenia, phone # - 386 5 664 72 33
•Dr. Simon Stopar Alojz Dr.Med. s.p., zasebna ambulanta splošne medicine, phone # - 386 7 818 41 34

Croatia:
•Dr. Vladimir Bedekovic, KBC Sestre Milosdrnice, Zagreb
•Dr. Miroslav (Mirko) Ivkie, KBC Sestre Milosdrnice, Zagreb

[Jules]

I’m sorry that he wouldn’t help you- unfortunately it’s quite a common theme with doctors who haven’t much experience with ES to state that the surgery is far too risky . Obviously there are risks, so it’s not untrue, but it can be done. I don’t know what your health care system is, how easy it is to see other doctors, but we have heard that head and neck cancer surgeons routinely remove the styloids to access the neck, so whether there’s anyone like that you could se? Otherwise a skull base surgeon/ otolaryngologist or a head and neck vascular surgeon might be an option?
Or whether you’d be able to contact a surgeon in another country as @Isaiah_40_31 says? Some doctors do video/ telehealth consults rather than having to travel…

[gramos]

Thanks @Isaiah_40_31 for the recommendations and the info. Turkey might be my easiest possibility to go abroad we have a direct flight to Istanbul. My biggest problem is finding some validation that I am suffering ES and they are causing my chef complaint which is tachycardia. And for this the opinion of doctors is 99% against vs 1 doctor (who actually did 12 operations so far). Today I had another appointment with the Director of ENT of state hospital. He was totally against surgery. He said my arteries and veins are totally free from compression and about nerves he said mine are far from them especially Vagus Nerve. Meanwhile I have sent my examinations to a Radiologist who works in Switzerland and will wait for his opinion if nothing comes up again I think I must travel to Turkey. I don’t know what kind of examinations I should ask to know if really SP are affecting my nerves. I think I read in forum for something called FIESTA MRI but don’t know much about it or if that is available in Turkey.

[Isaiah_40_31]

The doctor we have on our list for Turkey has come very highly recommended. He may be able to help you determine if your heart symptoms are related to your elongated styloids. I would bet they are at least in part. The FIESTA MRI supposedly shows nerves. I don’t know much about that type of scan but it has been mentioned on our forum several times. I must say, I don’t know how your current doctor could definitively say your styloids aren’t contacting or affecting your vagus nerve when he has no positive way to tell if they are or not. I think your symptoms suggest your vagus is irritated by your styloids, but I’m not a doctor so don’t consider my opinion very highly.

•Dr. Kamran Aghayev - https://kamranaghayev.com

[gramos]

I have contacted that doctor, and followed my examinations by email, they promised for a free consultation if it doesn’t take long otherwise a fee of 100$. Let’s see if I can get some more info for my case.

@Isaiah_40_31 can you help or show how to measure my Hyoid Bone Greater Horns ? I am trying to do that in dicom library but it shows in pixels. I read somewhere in one of the threads that you mentioned the normal male greater horns of hyoid should be around 2cm, right ?
Up to this point zero doctors or radiologists mentioned something to me about HBS.

[Isaiah_40_31]

Hi @gramos,

I’m also sorry to say that I don’t know how to use dicomlibrary to manipulate images or do measurements. @LimeZest can probably help you with your hyoid measurements. What’s most important is how close the greater horns are to your cervical spine. In the images you posted, they look very close, but your carotid bifurcation is in the way in the image that shows that best.

You may need to point out the situation w/ your hyoid to your doctor & ask for his/her opinion as that can be something that gets missed especially if you also have elongated styloids.

[LimeZest]

thanks @Isaiah_40_31 . Sure i will try to download the DICOMs and have a look. But largely even the 2D images you show here indicate calcification down the stylohyoid ligament.

Would agree that it could irritate vagus nerve affecting heart rate, but the other thing to be sure about is cervicomedullary syndrome which can also cause autonomic issues.

your neck pain could also be related just due to irritation of area, but also the calcification will affect movement of the neck so doesnt surprise me. Your motor weakness is a bit concerning but I will look at your images to see if there is anything obvious.

But just as disclosure i’m not a doctor (not the medical kind anyway).

[Isaiah_40_31]

Thank you so much for rescuing me, @LimeZest! I know you are very busy. Any updates re: your ES journey? Surgery planned yet? How are you tolerating your symptoms?

[gramos]

Hey guys, wanted to give an update, I had the online consultation with Dr. Kamran Aghayev, for whom I also got recommendations from @Bowser , He called me directly via Whatsapp, and we had about 40 mins call and they did not charge me.
I provided him with all my examinations and after he got 20 mins pause he called me again and said that my styloids are very close to C1, leaving a space of only 3.5 mm for the IJV in both sides, normally that should be 10mm. So he recommended surgery for both sides. He said that he does also do C1 shave te release more space. About stylohyoid calcified ligaments he said that it shouldn’t cause any problems to me, he put that in doubt, but I think I should also remove those.
He also mentioned he can do bilateral surgery and left that as an option if the patients choose to. That confused me a bit. Don’t know why actually it is not default to do bilateral styloidectomy if its possible?

Regarding @LimeZest , I am still waiting for his response, really wanted to hear about his opinion, since he also mentioned “cervico modullary syndrome” which no one mentioned to me before. Really want to avoid situation where I mis something else totally.