Hi All, I’m from the Greater Toronto Area in Canada. It’s been a little over a month since the neuro-vascular surgeon confirmed that I have ES with internal jugular vein compression between my right styloid and C2. I’ve needed some time to process how that appointment went. For the past year I thought I had a blood clot blocking my jugular vein and no one could figure out how I got it, so I was put on blood thinners while being sent from specialist to specialist. I was able to find this site in between reading my 3D CT scan report and researching what it all meant. I’ve learned so much from all of you, but as prepared as I thought I was for the appointment, I didn’t expect to hear what I was told. I did learn that he did not believe I had a blood clot, and he was recommending I be taken off blood thinners (this was great news). I was told that I don’t have intercranial hypertension and because my right jugular vein is abnormally narrow from birth he suspects only 5% of my blood drains through the vein. He said I don’t need that vein to survive and from his perspective he does not need to be further involved. He used to do the surgery but no longer does due to a lack of funding. He uses the little extra money he had to try to diagnose people. He is referring me to an ENT at Toronto General Hospital as that is my only hope for getting surgery although he is not convinced I need that. He said it will take a long time to see the specialist. This threw me as I had read that venous compression would likely indicate surgery. Has anyone else been told they wouldn’t need surgery if they had venuous compression? I asked about my symptoms which are impacting my life although not nearly as much as I have heard many of you describe. I have reoccuring neck pain, back of the skull pain and numbness in my right side of face and behind my eye. Sometimes the pain radiates down my shoulder and back or I have chest pain. Sometimes I have a sore throat only on my right side.Occasional jabbing pain in my throat. There are many things I like to do that such as lifting weights, certain yoga positions, golfing, gardening that trigger pain but I don’t have pain all the time. So, I now avoid many activities although I am wondering if this is something I will need to learn to just deal with. I am seeing an Opthamologist next week to have my eyes tested as I do have dry eyes and about once a week my vision is blurry when I wake up for a few minutes. So here I wait to see an ENT doctor that I have learned has seen other patients in the Toronto area but none have received surgery. Most of my appointment with the doctor ended up being a discussion of Ontario health care and the difficulty Eagle Syndrome patients are having getting treated. I have learned of a few Canadians who have met with or had surgery with Dr. Cognetti, Dr. Hepworth, Dr. Osborne or Dr. Hackman. I thought as I wait to see someone here, it would not hurt me to reach out for some consultations with some of these doctors. Thoughts?
I’m sorry the neurovascular surgeon left you a bit confused. I’m glad he knew something about ES, but I feel the advice he gave you about surgery wasn’t the best. In situations like yours (yes, we have other patients w/ the same IJV set up) where only 1 side is working well), when the good side becomes disabled due to some level of compression, it’s most likely symptoms will worsen over time thus considering surgery before you feel incapacitated by symptoms is a good idea.
We usually see the IJV being compressed between a styloid & C1 but have had a few members where C2 was the culprit. The majority of our CA members who’ve come to the US for surgery, have seen Dr. Cognetti as the charge for cash paying patients is considerably less than any other US surgeon we know of. In cases of IJV compression, he has a neurosurgeon who works alongside him - Dr. Heller. Dr. Heller’s fee is higher than Dr. Cognetti’s so the total cost is significantly higher overall than for non-vascular ES patients. As far as I know, our members who’ve seen Drs. Cognetti & Heller for styloidectomies & IJV decompression surgeries have had good outcomes.
Dr. Osborne & Dr. Hackman don’t do vascular decompressions surgeries, & Dr. Hepworth’s office can be a bit frustrating to work with, but he does do IJV decompressions & styloidectomies.
I do recommend having a consult w/ a US doctor. Both Drs. Cognetti & Hepworth are booking in Oct. right now, but you could try Dr. Costantino who’s in NY. He’s also very experienced w/ VES & may not be booked out as far.
Dr. Edward Hepworth, Denver Sinus Care, 3150 E 3rd Ave, Denver, CO 80206 (720) 899-9489, FAX (720) 953-5151, Emailing this office will get a quicker response than calling. email: info@denversinuscare.com
Dr. Peter Costantino, 4 Westchester Park Dr, 4th floor, White Plains, (914) 517-8056
http://www.nyhni.org/find-a-physician/Peter-D-Costantino-MD,FACS
Dr. David Cognetti, Thomas Jefferson University Hospital, Philadelphia 215- 955- 6760 (Has done many successful surgeries on members). Only removes ligaments if calcified. David M Cognetti MD | Jefferson Health
Thanks so much for that information. I will look into it. Wish me luck.
I’m sorry that you’re left in this situation, Canada seems to be particularly bad for care (although our UK members are pretty much in the same boat!) . It sounds as if you possibly have compression of either the facial nerve or the trigeminal nerve as well, given that you’re getting numbness in your face at times, and also the accessory nerve can cause shoulder and arm pain, so ES surgery might help with that too. There are nerve pain medications which can help with that if it’s too much?
I would ask the ophthalmologist to check if your optic nerve is okay- sometimes with IJV compression it can raise the intracranial pressure and this can put pressure on the nerve, so wouldn’t hurt to double check even if the neurovascular surgeon feels you don’t have an issue with the IJV being compressed…
If you have the funds, then I would certainly look at getting a consultation with one of the doctors @Isaiah_40_31 has mentioned 
Thanks Jules. All that makes great sense. I’ll see what they say Tuesday about my eyes. I may look into physical therapy for posture as he mentioned I am likely having all these symptoms now as my C1 and C2 are rolling forward as I age. I found a rehab clinic that specifically mentions they are experienced with PT for Eagle Syndrome patients. I have been afraid of going to someone who doesn’t know what it is. Maybe it will help. I’ll see my doctor about nerve medication. I have been on them before and it has helped with nerve pain. Good thing I retired this year. Who the heck has the time for all these appointments if they are working full time? It’s tough when you don’t have energy and you’re hurting isn’t it? I can absolutely get consultations. When it comes to the question of whether or not I would be a candidate for surgery, I would trust the more experienced doctors to let me know. Have a wonderful weekend and thanks for taking the time to weigh in. I really appreciate it.
That’s excellent finding a PT clinic who are experienced with ES! There’s been lots of posts about how posture can exacerbate ES symptoms, if you want to read up more, @vdm did lots of links to YouTube & other resources here:
My Favourite List of Research/Educational Resources - General - Living with Eagle
It’s gotten quite long but there are exercises on there for posture!
I’m glad that you’re able to spend the time (& finances?!) to get this sorted
Thanks, I will check that out to see if I can get started on things at home. As for finances I’ll see if I can get by doing all the other suggestions first, and seek some other opinions before considering surgery. If I have to do the surgery route, we’ll find a way to do it. Quality of life trumps all. For now it’s one day at a time:)
You mentioned neuro pain - I have tons as well!
I am also from Toronto and recently had a pretty comprehensive CTA which was ordered by a ENT doctor after a dental surgeon found I had an elongated styloid process. The CTA confirmed I had a right side styloid process elongation of 4.5 cm, but veins, arteries and compression were all in good condition. However, the report did not mention nerves so I am wondering if I should be having an MRA to check that out as I have very strong Eagle Syndrome symptoms. It is my understanding that the classic form involves cranial nerves 5-tri geminal, 7-facial, 9-glossopharyngeal, and/or 10-vagus so why is an MRA of neck/head a standard procedure.
I would be interested in knowing who the neuro surgeon was that you saw in Toronto as maybe he/she should be my next port of call - after seeing more than half a dozen doctors who were not helpful at all.
You’re right about the commonly affected nerves, but they don’t often show very well on a standard MRI… We’ve had some discussions about it, there’s a more detailed type of MRI scan called a FIESTA MRI / Ciss MRI, but they’re hard to get unfortunately.
Hi! The neurovascular surgeon I saw was Dr. Pereira at St. Mike’s in downtown Toronto. I had shared with him an MRI and a CT scan with contrast I had from Southlake hospital. Before Dr. Pereira would see me, he wanted me to get a 3D MRI and a 3D CT scan with contrast at St. Mikes. With those scans, they can see much more than with my previous scans. They could see the styloid and C2 compressing my jugular. There never was a blood clot as was first thought. He said the other Dr.s would not have seen the bones in the previous scans. When I mentioned my ongoing pain, which I think is primarily nerve based, he couldn’t comment on that but was referring me to the ENT at Toronto General. I am not sure if I will be able to see the nerves in my 3D pictures. I have just gotten the pics but haven’t been able to properly see them in 3D yet.
Dr. Pereira seems to be one of the few Doctors in the GTA who diagnoses Eagle Syndrome. He has done surgeries in the past but no longer is funded to do them. He is working primarily with people who have Ehlers-Danlos syndrome. Apparently, they are finding that people with ED sometimes have ES as well. That is why he can see people with ES symptoms to diagnose. As he deals with the vascular side of things and I don’t have hypertension, he is passing me on. There are other people from this site that are currently patients of his or have been due to their hypertension. Sorry I can’t be of more help. I am heading back down in a little over a week (my appt was moved). If I can’t figure out how to see these scans in 3D by then, I’ll ask them and see if we can see the nerves and I will let you know.
@lizla - you can try converting your CT & MRI to 3D using either radiantviewer.com (for PCs) or Bee Dicom Viewer app for Macs. Another option is uploading your images to dicomlibrary.com. That site anonymizes the images & produces 3D images then sends you a link to share your images as you choose.
I haven’t. My husband is going to help me look into it tomorrow. I’ll let you know how it goes. Thanks for the tip.
Morning, I managed to download and see the scans in 3D using the Bee Diacom Viewer app. It allowed me to see the compression of the two bones. The scans show the veins and the skeletal system. It has become very apparent to me that the entire right side is significantly narrower than the left side, both above and below the blockage. That must be the congenital piece and one of the reasons why he said I have very little blood draining on that side. I have never seen this in anyone else’s scans.
It is quite common to have one IJV narrower (hypoplastic) than the other, & the other IJV is the dominant one. If the hypoplastic one is compressed it generally causes less symptoms than when the dominant one is compressed, as the dominant one carries more of the blood flow. Other collateral veins can take over the blood flow too, to compensate, although it often gets to the stage where they can’t compensate enough.