Got diagnosed with vascular Eagle syndrome, both relieved and scared!

[aelsaman]

I am both relieved and scared.

Being able to find the right diagnosis for my symptoms and understand what causes my body to suffer all those years is a relief, believe me . But also learning about different surgical approaches and that only a few doctors worldwide who can successfully perform this kind of surgery scares me a lot as well.

First of all, I am very grateful to all the members in this community and other groups on Facebook as well for sharing their journeys and all the information to get through this syndrome. It is very frustrating that many specialists don’t believe in Eagle syndrome and have very little knowledge on how to diagnose its symptoms.

Also, It is so hard to live and deal with these symptoms without being diagnosed. It is like fighting an enemy that you can’t see!

I am a 37 years old guy who was born and raised in Egypt but lived as an expat overseas for the last 7 years. Throughout my life, I knew there is something wrong with me physically. So, I was trying to rule out other diseases that may have similar symptoms over time. I did many scans on my heart, neck, and brain but got nothing. Doctors weren’t willing to move forward or believe my complaints. Until one day, earlier this year, I was asked to do CTA/CTV scan with contrast. Only then did we notice how compressed my IJVs are. Things got easier from that moment. I found a skilled doctor who was able to recognize my elongated styloid process and warned me against doing vein ballooning or stenting before surgically removing those elongated styloids.

Again, having access to this knowledge is a key to learn about this syndrome and how other folks were able to get their treatment.

I spent some time to educate myself about different approaches to treat this syndrome. I understand that there are a few doctors worldwide who are able to perform this kind of surgery with minimally invasive approach. Just to name a few, Dr. Osborne, even though he is not vascular, Dr. Hepworth, Dr. Nakaji. Also a few doctors outside the US, such as Dr. Moises in Mexico, and Dr. Kamran Aghayev in Turkey. I have decided to move forward with the surgery, styloidectomy. But not confident about C1 shaving. I understand C1 resection is highly dependent on the operating surgeon.

I am attaching a few images from my scans. Looking forward to hear your thoughts and first impressions given your similar experience with ES.

[aelsaman]

special thanks to @Isaiah_40_31 for explaining IJV compression to me and sharing a few useful resources.

[Isaiah_40_31]

@aelsaman - I didn’t notice before, but your right styloid has quite a curve to it. Besides your vascular symptoms, do you have any nerve pain in your face, neck, shoulders, or elsewhere? If so, getting the right styloid shortened should help reduce or stop that pain.

I am glad to know you have the ability to travel to see the surgeon you decide is the best to help you.

[Jules]

It does look as if there’s a reasonable gap between the styloid & the C1, but it’s impossible to say whether just the styloidectomy will be enough to ease the compression, I guess you have to be guided by the doctors- it’s good that you’re able to see someone with experience in the US. I had bilateral IJV compression, and was lucky enough to have surgery with an experienced UK doctor, & the styloidectomy was enough for my IJVs to re-open, although the surgeon had warned me before hand that it doesn’t always happen.

I hope that you’re given enough information from your doctors to be able to make the right decision!

[aelsaman]

I do have a clicking jaw towards the right side but very minor. I even had a splint for sometime in the past. I never thought it might be related to my styloids, I always blamed my muscle stiffness for that !

[aelsaman]

Hi Jules, totally agree with you, everyone case is different. I hope removing styloids will be enough to open up my IJVs. But if not, I am willing to do C1 shaving in the same surgery.

I am applying for a US visa which might take up to 6 months to be issued. In the mean time, I am contacting different doctors in order to arrange my surgery.

I am happy you were able to get your surgery in the UK. do you mind asking which doctor did the surgery for you? and can he do IJV decompression and/or C1 shaving, if needed, or only styloids removal?

Appreciate your help

[Isaiah_40_31]

The styloid could be causing your jaw to click or it could be irritating the muscles making them tight which is causing your jaw to click. Either way, the styloid is the culprit.

[Jules]

I had surgery with Mr Axon , in Cambridge - he works at the Spire Lea private hospital (as well as on our NHS). He has started doing C1 shaves recently…