New here and looking for advice

[Acefob]

Hi guys!

I’m new here and I wanted to introduce myself and give a summary on my situation.
But first of all: What an incredible community this seems to be, it has been really helpful reading through posts and other people’s experience and advice.

So about me, I’m 39, male, and based in Sweden. For about a year, I’ve had the following symptoms:

• Feeling of strangulation/choking when i turn my head to the left
• a constant lump sensation in the throat and some phlegm
• feeling like something is pressing on the left side of my throat
• potentially minor swallowing difficulties (I’m not sure yet to be honest.)

I did a CT Scan three months ago, which showed elongated styloids, (around 4.6cm each). The doctor said that they don’t appear to be compressing any major blood vessels and that it doesn’t look “dangerous”, whatever that meant.
I also recently did a Diagnostic injection, a lidocaine injection as I had read on Dr. Aghayevs website that it could help confirm the diagnosis if the injection temporarly relieves the symptoms. For me, it did.

So recently, my doctor here in Sweden suggested doing an intraoral stylodectomy to shorten the styloids. They don’t seem to be doing the transcervical surgery here in Sweden and only one or two surgeons in the country perform the intraoral procedure, with relatively limited experience.
(If anyone happens to have done this surgery here in Sweden, I’d love to hear about your experience.)

Before making a decision, I started googling around for information and found this amazing forum and learned a lot about ES, and I also got some perspective on my own situation after reading through other members posts and their symptoms, some seemed far more painful and difficult than mine. My heart goes out to all of you, and thank you guys for sharing your stories so openly.

The situation for me right now is:
At this point, I’m mainly trying to figure out what typ of ES I have, and I’m considering surgery.
But I’m hoping to find an experienced surgeon and I’m leaning toward the transcervical approach as it seems to be safer and more effective, based on what I’ve read online.
So far I’m considering Dr.Aghayev in Turkey, Mr Axon in UK or maybe a surgeon in Germany, although I haven’t found one yet, so recommendations on german surgeons would be appreciated. I’m also curious if Mr Axon accepts international clients and how much it would cost (ballpark) in that case.

That’s been my ES journey so far, and right now there’s so many feelings and thoughts in my head, like:
Should I even risk surgery at this point,
Do i need to do other tests can I do to figure out if this is a Classic ES or some other version?
Is the transervical approach actually better for my specific situation.
Do I just do the surgery here in sweden and hopefully it works out.
Which surgeon is best suited for me, both experience and cost wise.
And so on.
Sidenote: I’ve been diagnosed with GAD (General Anxiety Disorder) so I can’t stop worrying.

In any case, I’m really glad to have found this community. If you guys have any advice for me I’d be grateful, and if anyone here has had surgery in Germany and can recommend a surgeon or center, I’d be very happy to hear about your experience.

All the best to all of you!
Acefob

[Jules]

Hi, & welcome to the site! I’m glad that you’ve found the site helpful so far too…
If you had a CT scan with contrast, then this would show whether any blood vessels are compressed, did you have this done, or did the doctor decide blood vessels weren’t being compressed just from the angle of the styloids? You can also get a pretty good idea if your styloids are compressing blood vessels based on symptoms- dizziness, fainting or stroke like symptoms can happen with carotid artery compression. Head & ear pressure, an off-balance feeling, pulsatile tinnitus , brain fog are common symptoms with jugular vein compression. There’s more detail in this section:
ES Information: Common Symptoms And Possible Explanations For Them - Welcome / Newbies Guide to Eagle Syndrome - Living with Eagle
I would presume that’s what your doctor meant the your styloids didn’t look dangerous…
You can search the discussions about doctors from Sweden; we’ve been given the names of these doctors by a member, but i don’t know much about them:
•Dr Mats Lidegran, Stockholm Karolinska Universitetssjukhus
•Dr Jakob Enerdal, Stockholm Karolinska Universitetssjukhus- does intraoral surgery.
•Dr Gyula Keliger, Universitetssjukhus i Linköping
•Crina Unguras - Universitetssjukhus i Linköping
•Tomas Ekberg - Akademiska Sjukhuset i Uppsala
•Johan Nilsson - Skånes Universitetssjukhus i Lund
Intra-oral surgery can be successful, but external is generally regarded as better as more of the styloids can be removed. And intra-oral surgery is often a more painful recovery.
Mr Axon does do surgery for international patients, several members have travelled for surgery with him. I don’t know the cost though I’m afraid.
There are several doctors on the list in Germany, so again you can use the search function again to look up any mentions of them. Prof. Dr. Dr. Martin Kunkel At Klinik für Mund-, Kiefer- und plastische Gesichtschirurgie /Ruhr-Universität in Bochum/Germany has been mentioned a few times I think, also Dr. Nils Heim & Dr. Warwas, Klinik am Kaiserteich Gmbh Reichsstraße 59, 40217 Düsseldorf
phone: + 49 (0) 211.220 50 22-0 fax: + 49 (0) 211.220 50 22-499 .
There are some risks with the surgery; a risk of damaging nerves is the most common one, usually this resolves with time. So it’s important to be really sure that the symptoms outweigh those risks for you, but equally there’s something to be said for having surgery while you’re young enough to recover well, and leaving the styloids in if they are irritating nerves could equally damage them, so there’s lots to consider!
Also the styloids can irritate the vagus nerve, and anxiety can be one of the symptoms from that, so if you didn’t have anxiety until recently, it could be due to ES?

[BlueRiver]

Surgery does come with risks. I’ve had surgeries that went great and some that didn’t. I am thankful that was styloid surgery was quite successful.

Ask yourself if you can continue living with the symptoms and lead a happy successful life. Only you will know the answer.

I will share my experience: main reason for my surgery was because of migraines which were so bad it caused me to be almost 100% disabled for many years, with many trips to the emergency room. After the surgery I still live some symptoms and pain at a manageable level.

My father, who is an older guy - I suspect he has eagle’s like me. He probably won’t ever get a surgery because hes lived his whole life with similar symptoms: neck pain, shoulder pain, choking, esophagus restriction, hiccups and vomiting. He’s a very successful man and these things don’t slow him down. He just has to eat food slowly.

Just think about your life, your long term future and make a decision without rushing. Hope that helps.

[Isaiah_40_31]

@Acefob - I’ll also add to @ Jules’ list for Germany •Dr. Markus Martini at St. Lukas Klinik in Solingen/Germany,
Mund-, Kiefer- und Plastische Gesichtschirurgie, Contact - works together with Dr. Sarah Neering

He’s done several more recent ES surgeries for a few of our members.

I am in the same boat as Jules as I don’t know what I’m looking at in the pictures you posted so I can’t make any comments. I look forward to seeing your CT imaging when you’re able to post it.

[Acefob]

Thanks to all of you for sharing, and providing such thorough advice and information. I really appreciate it, and I’ll look through the list of doctors in Germany. My main concern at this point is just like you guys pointed out: do the symptoms outweigh the risks.
For now, I have contacted Mr Axon in England for a consultation and review of my scans to help me evaluate my situation and possible next steps. I did a CT Scan with contrast back in April I will share with him, and I wanted to give you guys some screenshots as well. Here are some pictures, (hope I took good screenshots):

Compression on the last picture?

[Jules]

There does look like the IJVs are a bit compressed, although maybe more by the C1 rather than the styloids- there looks a reasonable space between the styloids & C1 so the styloids might not be the cause of that. But they’re certainly longer than average, & quite pointy, so could easily cause symptoms. Your hyoid bone processes do look fairly long too; that can cause a strangling sensation- have a look at some posts about hyoid bone syndrome on here & see what you think? Mr Axon is certainly knowledgeable about IJV compression, but I don’t know how much he knows about hyoid bone syndrome, I don’t think he would do surgery for that. It seems to be harder to get HBS surgery in Europe , if you think this might be an issue…

[Isaiah_40_31]

@Acefob - Good job w/ the pictures you posted! I agree w/ what @Jules said & will add that it looks like you’ve lost the lordotic curve in your cervical spine. That can bring the styloids & greater horns of the hyoid closer to nerves & vascular tissues which can make them more disposed to cause problems. There has also been speculation on our forum that straightening of the cervical spine could be the body’s reaction to IJV compression as loss of lordosis can, in some situations, create a little more space between the styloids & IJV to give a bit more space for the IJV to open. The curve can be restored via gentle PT exercises, but it takes time & diligence.

[Acefob]

@Jules @Isaiah_40_31 Interesting, I wasn’t aware that there was any compression on the IJVs as my doctor here in Sweden never brought that up, but he might have missed it. But just like you guys both pointed out, and Dr. Aghayev confirmed just today when he reached out after looking at my scans: the C-1 is causing compression. I have booked Dr Aghayev for an online meeting to discuss this further.
Regarding the hyoid bone, I will definitely look through the posts here regarding that too. This is the first time I hear about that, but I will talk to my doctor here in Sweden about the hyoid bone syndrome suspicions, and maybe I should bring that up in the consultation with Aghayev and Mr Axon too then.

It’s also the first time I hear about the lordotic curve. So much knowledge here!
Could that have been caused by the position I was lying down during the scan, or does that not affect this?

@Jules

Also the styloids can irritate the vagus nerve, and anxiety can be one of the symptoms from that, so if you didn’t have anxiety until recently, it could be due to ES?

Apologies, Jules, I just realized I never answered your question above. That’s good to know, and at this point I’m not ruling anything out. I was diagnosed with General Anxiety Disorder when I was around 19 years old, but I can remember having anxiety episodes even as a 5 year old. Maybe this ES/JVC/Hyoid situation have elevated it and made it worse though.

Also, I just figured out how to slice the imaging, so here are some more pictures where the Hyoid bone is more visible.

(taking my brave mask off for a sec)
To be honest with you guys, I’m confused, sad, anxious and not doing to good mentally right now. I’m trying to stay calm, focused and solution-oriented, and I think I’m doing the right things (educating myself, gathering information, joining this community, reaching out doctors, etc).
But as you guys know, it’s a tough road. And for me a very a lonely road. Right now I’m just filled with “doomsday thoughts” (My GAD doing it’s thing).
So I’m grateful you guys are here for me, making this uncertain road less lonely, wherever it leads.

Much love to you both

[Jules]

We’re here and happy to help out all we can, although obviously it’s not like having someone there to help you & give you a hug, sending a virtual one!
Looking at the new images you’ve posted, your hyoid processes do look very long, so could well be causing some symptoms too, & just to add something else into the mix, your thyroid cartilage looks pretty calcified too!
If you have time to look at this discussion by @mjzago , the doctor has confirmed the thyroid cartilage is calcified and could be an issue, and yours looks just as calcified, if not more so…
Doctor said its not eagle, but can you check again - General - Living with Eagle
And also, your mastoid process looks quite close to the C1 process, I don’t know if that’s of any significance, but usually there’s a bigger gap between the two?!
It probably seems quite overwhelming, but it’s worth getting doctors’ opinions on all of it before deciding about surgery, and it might be a journey rather than a one & done…
One positive though, it your neck does look more curved on these images & a less like military neck.
I hope that you’re able to enjoy some of the celebrations over Christmas

[Isaiah_40_31]

Another nice job with the imaging, @Acefob. I’ve marked your thyroid cartilage, but I expect you’ve already figured out where it is.

Based on the shape of your cervical spine in this second group of pictures, I’d guess that the more straightened appearance in the first pics was from the position you were in for the scan. I think your curve is somewhere between normal & straightening. Things you can do to start helping keep it where it is are to use your cell phone & computer at eye level when using them, so you aren’t looking down at them. Reading books & other materials at eye level is also helpful. I’ve currently got my computer screen sitting on a stack of books to facilitate that for me. I try to hold my phone at eye level when reading on it, though that’s a bit challenging when texting.

I agree that it’s a tough & lonely road you’re on especially when friends & family become dismissive of your symptoms or of you, in general, because they think you’re “faking it” or have a psychological disorder causing your pain. It’s such a shame that the people we’re closest to are sometimes those who are least tolerant & compassionate when we’re suffering.

Sending love to you & praying you’ll find the best doctor to help you. Wishing you’re able to have symptoms relief & pleasure around this holiday season.

You can see in this frontal image that your thyroid cartilage calcification is nearly touching or is touching your hyoid bone which is not normal.