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Eagle Syndrome - Online Support Group

Did anybody have a Cerebral Angiography?

Hi Melcomcosh,

No doctor will guarantee positive results w/ ES surgery. The multitudinous experiences of so many forum members here dictates that most people gain at least some level of symptom relief & some complete symptom relief. If your husband has bilateral ES, symptoms often remain after one styloid is removed & these will only go once the second one is gone.

I think part of the reason that doctors don’t guarantee results is because they have no way of knowing how well the irritated nerves will recover after surgery. Our bodies are designed to thrive & survive which is why they are constantly working to fix what they perceive is wrong inside. Sometimes those “fixes” cause more problems than they fix (e.g. ES). Getting pressure of the cranial nerves affected in your husband’s case will give them an opportunity to heal which in turn should decrease or eliminate his symptoms.

Many of my symptoms got worse after my first surgery because they were being caused by the remaining styloid. Once I had my second surgery, my overall symptoms disappeared abt 95% but it was a gradual healing process over many months after that surgery.

Thank you for the thoughtful reply; will let you know what we decide!

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I am having this done as well, also recommended by Dr. Hepworth. He also recommended to balloon my jugular vein as it is compressed (also shown by ultrasound) but the neuro vascular doctor said he cannot do that until after this procedure and he has more info. Who is doing your procedure? I’m seeing Dr. Kaminsky (recommended by Hepworth.) I do not have an Eagle syndrome diagnosis yet but it is suspected (again, after being taken off the table last month) due to my symptoms and jugular vein compression. Dr Kaminsky brought it up today as a possible cause of my issues. I hope if you move forward that yours goes well and sheds some light on your issues.

Edit: after re-reading your post I am not so sure we are having the exact same procedure but the brochure I got also refers to it as a cerebral angiogram and says risk of stroke less than 1 percent. (scared me as well.) Hepworth called it a “venograph” or “venogram” so maybe it is different. They’re going to insert a catheter into my jugular vein to map it and measure pressure etc

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Yes! We are living parallel lives! I am having the procedure on Friday. So I’m getting plenty nervous! Dr. Kaminsky is doing it. Measuring cranial pressure, catheters into my veins and arteries to map cranial circulation. Dr. Hepworth thought Dr. Kaminsky might do the balloon at the same time. But apparently Dr. Kaminsky has a different approach. I think, to probably oversimplify it, Dr. Hepworth favors the balloon even before removing whatever is compressing the jugular, because it’s less invasive than surgery but it sometimes works. Meanwhile, Dr. Kaminsky seems to believe that it is still kind of invasive, and has a very low likelihood of restoring flow when the occluding factor is still present. So he doesn’t do it. Again, probably oversimplifying.

I THINK I have an Eagle Syndrome diagnosis, at least according to Dr. Hepworth. I guess this test will tell us more!

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Omg. I can’t tell you how relieved I am to have found this forum and other people on a nearly identical journey I am on! The way you explained it makes a lot more sense, the two doctors differing perspectives. I was so wigged out and anxious at my appointment with Dr Kaminsky today that I did not ask too many good questions. He seemed annoyed that I had not had better imaging (maybe a ct with contrast? Mine was without) and seemed to disagree with the conclusion of my ultrasound… he thought the compression could not be that far down my neck. I was disappointed that it’s just another test and not a treatment (ballooning) because I am so desperate for relief, but I realize the importance of getting more info. His office is doing insurance pre approval now and hopefully I can schedule soon. Please do message me or post here after the angiogram as I am very curious to hear about your experience. I will be thinking of you Friday and hoping for the best possible outcome! I did not find Dr Kaminsky’s bedside manner to be as great as Dr Hepworth’s but I’m sure he is more than capable considering he treats people whose lives are at risk.

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Same! I was bummed about the balloon as well. That was why I agreed to see Dr. Kaminsky in the first place, I thought there would be an attempt at treatment. I totally agree on Dr. Kaminsky’s bedside manner. And yeah, he really didn’t say much to me by way of diagnosis at all. But I figure Dr. Hepworth is going to see these results, and I’ll consult with him about what next steps to take. I will keep you posted!!!

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Bopper & blossom,

I have to say that I think Dr. Kaminsky’s philosophy is better than Dr. Hepworth’s. What good would it do to “re-inflate” your jugular vein if the thing that is compressing it is still present? Logically it makes sense that if the styloid is compressing the vein then it will continue to do so even after the balloon work is done. Elongated styloids are like tusks in your neck. They aren’t going to respect the fact there was an attempt to re-open the jugular. If they are the cause of the vascular compression, they’ll just get back to work compressing until they’re removed.

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Yes, that makes sense to me.

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I agree. Unfortunately in my case they don’t even know for sure if it is the styloid impinging my vein or what is going on. It’s one theory. So I was just hopeful I might get some relief quickly! I’m more inclined to do the styloid removal surgery if that is the problem.

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I expect Dr. Kaminsky will have your head in the “provocative” position so he’ll be able to see what’s causing the compression. I think you or Bopper noted that is his goal.

Blossom, what are you symptoms? How bad are they? All of my various facial nerve pain symptoms, sore throat etc have actually improved. They aren’t gone, but they are a lot more tolerable than they were at first. Not that I wouldn’t be happy to be all the way rid of them! But it’s the dizziness that makes me think I need to address the problem.

Also, I’m not at all clear what is impinging my jugular either. Just that something is.

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Bopper, I have severe pain in my right side neck, right side of jaw, throat pain (like I have a lump or something is stuck in there), shoulder pain, arm pain, arm weakness and arm numbness at times. All on the right side. Severe headaches behind my right eye. I also get dizzy randomly but especially when exercising and feel like I’m going to pass out — can feel my heart beating in my head and usually get a bad headache during these episodes. Sometimes I get weird noises in my ears like a whooshing/running water sound.

For pain I am just basically using OTC NSAIDS. For a while was prescribed tramadol but Hepworth wants me off of it. I don’t really want to be on it either, but unfortunately it was the only thing that actually worked… and I haven’t been given a ton of alternatives. Aleve does not help much and I’m not thrilled about having to take it or ibuprofen all the time. He also has me drinking dandelion tea which is supposed to help with intracranial pressure, and I use Biofreeze gel. Tests I have had so far: CT scan without contrast, vascular ultrasound of my neck and I was sent to an eye doctor to check swelling of my optic nerve which I did not have. The horrible neck pain all started in March for me but I have had the headaches and pass out episodes for years, but was diagnosed with migraines and panic attacks. I am just desperate for relief from the pain! At this point I will do or try anything including surgery. The dizziness is scary but I am able to manage it by listening to my body, resting and eating and drinking sports drinks like Gatorade.

Nerve pain can be treated with medication if you’ve not tried anything- like Gabapentin, Amitriptyline. It sounds as if the accessory nerve could be compressed giving your arm & shoukder pain, & maybe the facial or trigeminal nerves causing jaw pain. So might be worth a try.
I had bilateral jugular compression too- had the dizziness & headaches, ear pressure, pulsatile tinnitus (hearing your heartbeat, whooshing etc), couldn’t exercise…but all helped very much by surgery, so keep up the hope!

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Hi blossom,

To add to Jules comments, it also sounds to me like you’re having vagus nerve issues. These would show up in the panic attacks, dizziness when exercising (vagus affects blood pressure/heart rate which were affected when I exercised so I felt like I would pass out), throat sensations. The trigeminal nerve can also be at fault for eye pain as one of its branches runs up to & behind the eyeball. I had terrible left eye pressure & pain. Felt like my eyeball was being pushed out from behind. That stopped as soon as my left styloid was removed.

As far as I know, I didn’t have vascular compression or if I did it was low grade.

Wow – so many similarities! My symptoms started in March of 2018. Honestly, many of them have improved recently. I think diet has a lot to do with it. Since COVID I’m not eating out, and cooking a low inflammatory diet at home. I had BURNING throat pain, and ear pain, and a weird, painful cold sensation behind my eye. That is still there, plus I sometimes get a burning sensation across my face. I also have some arm tingling. I think I have vagus nerve involvement as well. I get this weird, anxious-y, adrenal-y sensation that runs from my abdomen up my chest. When symptoms were bad, I tried all of the nerve pain stuff – Gabapentin, Gralise, etc. Didn’t like any of them. Didn’t help them pain that much, but the side effects were annoying! Anyway, angiogram is tomorrow. Say a prayer if you are so inclined, and I will report back soon, God willing!!!

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Will do :pray: hope the angiogram shows what’s going on…

Thinking of you today, Bopper! Hope everything goes smoothly and you get some answers.

Hi Bopper,

I hope the angiogram went well. You’re totally on target w/ the vagus nerve observation. The anxious/andrenaliney sensations combined w/ the the sensation from abdomen to chest is certainly vagus nerve induced. That is the exact course of a major part of the vagus nerve. It runs through the chest w/ a large nerve bundle in the heart area then up through the neck to the back of the skull. It influences a huge number of our body functions from head all the way down to bladder & bowels.

Looking forward to knowing what you learned today & praying all is well.

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Good luck with angiogram. Just had one Thursday. Waiting for results. My problem started with sore throat and ear ache for two months, Honestly it has subsided. The pain was also intermittent. PCP said it was allergies so ignored, but kep coming back. Went to Dr Coniglio in Rochester Ny and immediately diagnosed Eagle Syndrome. Did CT with contrast that showed long styloids 4.6cm on both sides. Left side was kinking carotid artery. Did Angiogram to see blood flow. Now waiting. For results I’m wearing neck brace and told to keep neck straight. On .81 baby aspirin. I now have intermittent umb eas u dear neck. Once in awhile sides of neck and can’t swallow right sometimes. Really better tha. It was at start. The fear here is I’ll have a stroke, I guess. Keep you posted.

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I was the same when my symptoms started. At first, but your pain in the throat pain were really terrible. My throat literally felt like it was on fire. Multiple ENT’s looked at it, and just said they didn’t see anything wrong. Over time, the ear and throat pain thought a lot better. I still have them, but only vaguely. The eye pain has been the most consistent.

Keep us posted on your results!