I have confirmed diagnosis of ES but since then have been Diagnosed with Ischemic stroke and non occlusive blood clot in my jugular, and possibly one in my sinus. Neurologist I saw suggested it was the ES causing compression. I have had a venogram and MRI. Am being sent to a second ENT on Wednesday but I don’t hold out much hope that he will be able to help since ES is rare, and vascular ES is even more so. However, could you please offer some questions I should be asking for this appointment?
I really feel for you, this must be worrying, & is a very rare complication of ES. The only cure is to have the styloid process removed, but for some reason there seems to be a real reluctance to do surgery in Canada. We’ve had one member who had jugular stenosis through ES & had his vein stented without the styloid being removed- that was sucessful, although I was warned off having stents put in as they can cause pain, & can’t be removed.
If this ENT is willing to do surgery, the questions we usually suggest are do they do external or intraoral surgery? There are pros & cons of each, but on balance external gives much better vision to remove the styloid as far up towards the skull base as possible. You need to ask how much they’ll remove, & if there’s anything left will they smooth it off? Also make sure that they remove the piece that has been cut- unbelievably some doctors think that if they just snap the styloid & leave the pieces in it’ll be fine! Do you knoe if your stylohyoid ligament is calcified too? They aren’t always but if they are they need to be removed as well.
You could also ask about swelling- some doctors put a drain in, others give steroids, some neither, in which case you’ll have to manage swelling yourself with keeping upright & icing.
If the ENT’s not willing to do surgery, then you need to explore other options- an Otolaryngologist / Skull base surgeon should be able to help, or a Vascular surgeon who works in the head & neck area. We have had some Canadian members who’ve seen head & neck cancer surgeons although the waiting times are really long.
Have you got someone who can come with you to support you? You do really need this surgery, but also you need a doctor who understands ES to do the op. I hope that your appt goes well, let us know how you get on…
I am so sorry you are in this challenging situation. I want to make it clear that I am not a physician and am only trying to think about questions that might be good to ask during your appointment from my lay perspective. Was the stroke diagnosed retrospectively on imaging or were you aware of acute symptoms? I would want to be sure that I knew how to differentiate my ES symptoms from stroke symptoms, as rapid treatment of ischemic stroke can be important. I would also want to ask the ENT what steps they take during the surgery to minimize the chance of a clot in the jugular moving toward the heart when the styloid is removed.
Your situation is a scary one. How great that your Neurologist even knew about ES & its possible involvement w/ your jugular vein. Hopefully, the ENT to whom he is referring you will be someone with ES knowledge as well. As Jules noted, our Canadian members have had an awful time finding doctors to do ES surgery there. The doctors on our list for Canada are mostly in the eastern part of your country. It would be great to add someone to the list from your area.
I will pray that you’re able to find help close to home.
Based on events it’s believed the stroke occurred in June, but only symptom I had was excruciating debilitating headache…some very mild hand weakness that I attributed to fatigue…and then recurring headache.
He didn’t know about ES, I had to tell him and he looked it up.
I emailed Dr Samji’s office and his assistant said "he doesn’t know of anyone familiar with eagles in Canada ". Great…
I’m so sorry, Dr. Samji was no help, Tanyag. It was worth a try. I guess you never know where a doctor has connections until you ask.
Good work informing your neurologist about ES. I guess his lack of knowledge does not bode well for him referring you to an ENT who is familiar w/ ES then, but Jules gave you key information - try to find an ENT who is a skull based surgeon (these are often cancer specialists). Other doctors who often have skull based surgical experience are maxillofacial & neurology surgeons. Any of these would be capable of doing ES surgery for you. You should print the article from the link below & take it w/ you to your ENT appointment as it is very informative about ES surgery & might help you find someone who is willing to do your surgery closer to home.
How scary! I hope the hand symptoms heal well and that everything stays stable while your ES treatment is being worked out. In case it is helpful to you or your family, the ASA has a great handout on symptoms of stroke here
On the off chance it might be helpful, I did a literature review for published manuscripts about Eagle syndrome with authors from Canada. All authors I found are from Ontario, which I know is not close geographically to where you are but at least they are in the right country! 1. Dr. A. Alkakkan is in Neurosurgery at U of Toronto and is first author on a paper comparing two cases of vascular eagle’s syndrome that were associated with ischemia – which sounds highly relevant to your situation – and two of the co-authors on that paper are also neurosurgeons. 2. Dr. Tarek Ayad is co-author on a paper about an atypical ES case that shows good appreciation of the more common symptoms. The affiliation as of several years ago when paper was published is listed as Otolaryngology, U of Montreal. The other few papers are quite old and so I’m not sure there will be good chance of finding the authors still in practice.
This was very helpful information thank you
Had my appointment. Dr Bakala in Kelowna BC has and does ES surgery but I won’t be getting it . My styloid is 4cm and firmly attached to my skull with jugular compression. He was able to compare my current CT to the one I had in 2012, and while the styloid had grown from 2.6 cm to a little over 4, he feels jugular compression is the same…sure doesn’t feel the same…in any case with the newfound ischemic lesion and bloodclot, he is waiting until my next CT in early Feb to see if jugular issues resolve, continue or get worse. He said he could not guarantee improvement in symptoms with surgery and I respect his more conservative approach. At least for now.
I’m glad you’re comfortable waiting till Feb. I will say if it was me, & especially w/ the blood clot problem, I’d want that styloid out of there. I don’t believe anything will resolve until the styloid is not pressing on the jugular vein. It will be interesting to see what happens between now & Feb.
Hugs to you, don’t quite understand his conservative approach, hope things don’t get worse for you…