So i recently first posted here after seeing my elongated styloids at the dentist (pano) and suffering a carotid dissection last year.
I saw a bunch of specialists during the year always mentioning that i felt something in my neck and throat… hurting when swallowing ect… and i was convinced “something” in my neck had hurt my artery. This was dismissed by everyone…
At a recent follow up appointment with my neurologist i told her to review my CT scans for eagle syndrome, that i was positive my elongated styloids had caused the dissection.
She told me she had never checked them personally and relied on the radiologist’s notes that were issued when the scan happened, notes that mentioned nothing of the sort.
So she turned the monitor around and accessed my CT scan imaging and low and behold there they were in all their glory, very elongated styloids pointing directly at my arteries.
She wasted no time and told me she’d have the imaging re-evaluated asap.
Fast forward three weeks i already saw an ENT surgeon to discuss the surgery, she beleived arteries are movable and that the dissection was probably cause by me stretching (thats how it dissected btw, i tried to pull a chiropractor style neck stretch…. Ikr…. ). I was alot of nerve pain and that seemed to be her main focus ? Anyways she proposed intra-oral approach citing it was less risky, and that she would remove “as much as she can” of the styloid while staying in safe distance from danger zones. I have no idea how experienced she is. But being in Canada those who know about eagles is rare, those who can do the surgery even less so…
Any suggestions? I have to admit i am feeling a little stressed out. Also my carotid dissection has evolved into a pseudoaneurysm
My very honest piece of advice: in Canada the situation is almost hopeless when it comes to the Eagles syndrome surgeries.
I guess i will take whatever they give me then…
Not trying to talk you away from it, but… If I were you, I’d go to Philadelphia to discuss your case with Dr Cognetti and later to get the surgery there…
This surgery, if done inappropriately, can make things worse very easily.
P.S. Not necessarily Dr Cognetti in particular, he is just most affordable American doctor operating on Canadians AFAIK.
I have to admit im really happy the ENT and Neurologist took me seriously and rushed to schedule surgery.
I’m just worried about the quality of the surgery itself, lurking around i see alot of technicalities for surgeries discussed. My meeting with the surgeon was very brief, and basically only know it will be intra oral…. She did seem very knowledgeable though, and her speech reflected what I’ve seen online, stark contrast to most doctors who had no idea even what eagles was.
I fully understand, unfortunately this would be impossible for me financially as the only salary in this household.
Would you be able to get an out-of-province referral to see Dr O’Connell in Alberta? He is knowledgeable and experienced in Eagle’s syndrome
Interesting, i would love to. But since it’s been so long to even get acknowledged, and surgery finally so close, (and my vascular health degrading) i wonder if im ready to postpone anything here. Kinda caught between both.
I think i will call back my surgeon to clarify a few things, and let the big man upstairs take the wheel.
I will let you guys know how it went.
I am also planning on starting a massive awareness campaign for this disease, more to come !
I hope things will go all well for you. One thing that I have regrets for, I mistook one local surgeon’s high self confidence with his real experience and abilities, and unfortunately later I had to go to the US for the revision…
It’s a difficult decision, I can understand that you’re keen to get the surgery done, but I would be concerned about the surgery being intra-oral, as research shows that visibility is not as good, infection risk is higher, & not as much of the styloid can be removed. With vascular ES, visibility is obviously very important, so worth clarifying your doctor’s technique. (There are links to research articles in the Newbies Guide Section about surgery)
As you say, to find anyone to operate in Canada is hard enough, I understand that, & you rightly are concerned about leaving the styloid in for any longer, so I feel for you as it is being stuck between a rock and a hard place…praying that the decision is made clear and that all goes well
First off, I think these 2 strategies are topnotch, @Northerndad. I’m actually really glad you’ve found someone in your province who knows about ES & is willing to do surgery. I think your pseudoaneurysm adds an extra layer of urgency to your situation. I read that these can clot which causes them to close on their own, however, as long as your carotid artery is being annoyed by your styloid, that’s not likely to happen.
Things to check w/ your surgeon about are, will she do nerve monitoring during your surgery, & will she smooth off the tip of whatever part of the styloid she leaves in place? I’d also ask if the intraoral approach poses any threat to the pseudoaneurysm. Also ask about the post op protocol for keeping your throat incision clean & whether she Rxes a course of prednisone to help w/ post op swelling. Since the intraoral approach offers no visibility of the soft tissues during surgery, it’s extra critical that nerve monitoring be part of the surgical process to help protect the cranial nerves in the area from injury. It’s almost always used for the transcervical approach.
If you’re interested in seeing what surgery is like, there are YouTube videos of both intraoral & transcervical ES surgeries.
I do agree w/ @vdm that some of our Canadian members who’ve had ES surgery there have not had good results. We’ve had several members who had their surgeries done by Dr. O’Connell w/ good outcomes, & he operated intraorally so this potentially bodes well for the outcome of your surgery especially if your surgeon cuts the styloid back as close as possible to the skull base. Getting the styloid away from your ICA will help you significantly, & away from the nerves it’s irritating should give you great results.
I’ll be praying for you, too!
Thank you for the pointers and prayers @Isaiah_40_31 ! I will make sure to talk to the surgeon about those. She told me she would essentially cut as far as she can without approaching the cranial nerves too much (staying safe). She’s the main neck/cervical ENT surgeon at my hospital and does tons of surgeries year-round. I know she has done ES surgeries before but no idea how much.
When i was in her office she also explained quickly “we can go through the neck or mouth” for the surgery.
She then palpated my tonsil (couldn’t directly touch my styloid though), asked a few questions and decided to stick with the intra oral approach.
I’ve just had new contrast scans which we’re also sent to her office, clearly showing the styloid irritating the artery. But from my past experience with doctors i still feel the need to call and specify those details and make sure she cuts far enough to clear the carotid. (I’m sure she knows but so close to D-Day i take no chances ! )
Thanks again everyone, i will report back very soon !
Cutting back past the cranial nerves would help resolve your nerve pain symptoms. Going all the way to the skull base does put the facial nerve at risk but the styloid can be cut much shorter than the normal length (2.54 cm) w/o damaging nerves i.e. some doctors cut to 1 cm or less & get good results. I hope she’s willing to do that for you.
I hope so… The more i read posts on this forum the more i wish they would do the surgery through my neck, but she seemed to prefer the intraoral method by far. Is it even anatomically possible to cut a styloid this short transorally ? (She will be removing my tonsil, if that changes anything).
Also MASSIVE thank you to everyone on this forum for the incredible support and information. It’s incredibly comforting to know people can help us with our concerns !
It’s much easier for the styloid to be cut back shorter via the transcervical (through the neck) surgery. My recommendation to you is - it’s your neck. Let your surgeon know you’d prefer for the transcervical approach rather than intraoral. If she asks why, tell her you’ve done research on this type of surgery & have noted there’s a lower rate of post op infection & a higher rate of success in symptoms eradication when done transcervically because the styloid can be removed closer to the skull base. You could also mention that soft tissues, especially nerves plus styloid can be specifically seen when the surgery is done through the neck where that isn’t possible in an intraoral surgery.
If you do “push” for a transcervical surgery, & she’s resistant, please request that she clarify why she thinks the intraoral approach is better in your case. It’s sad you’d have to lose a healthy tonsil unnecessarily.
I am calling tomorrow to see if i can schedule something before the surgery. If for some reason it’s not possible, i will make due with the initial plan. I have already completed my pre-op and from talking to the nurses there the surgeon is well known and very busy. I have to say my experience so far much better than other Canadians on this forum, and after seeing so many specialists who wouldnt listen i have to be honest i didnt even expect to get surgery (let alone this fast).
I totally understand & am also amazed that your case has been prioritized for surgery (which it should have been).
You’re absolutely right, it’s best to accept this “gift” you’ve received & trust God to work out the details.
If you have to go with the intra-oral approach, might be worth reading some of the post-op recovery stories on here before surgery, recovery can be a bit more painful with surgery this way. Swallowing is certainly harder, so you’ll need ice and soft food for a bit longer…
I met with the surgeon and first thing i was told was that it will be a cervical approach after all, due to the pseudo-aneurysm and it’s risks (better spot for hemmorage control if something happens).
There will be nerve monitoring, the styloid will be smoothed after… Anyways she checked off all the boxes i was looking for, but now i have to see the vascular surgeon to get cleared for the big day !
Keep you guys posted.