A CTA scan reveals that I have Styloidogenic Jugular Compression. Anyone else have this? I’m going to need surgery, likely, due to the fact that medications aren’t working after several years. My symptoms are: burning/punching right eye,. throat pain when turning head, swallowing, talking; can’t feel the left side of my body when exercising, dizzy. I live on the East Coast. My neurologist referred me to Emory Health but I don’t know if they perform enough of these types of surgeries. Does anyone have any ideas or suggestions for where I might have luck finding a surgeon? Thanks in advance.
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We have many members who have had IJV compression by the styloids- obviously not having seen your imaging we can’t say whether you have compression from the styloid alone, or whether there’s compression by the C1 process as well, which is quite common.
The most experienced doctors for this are Dr Cosatntino in NY, Dr Cognetti in PA, and Dr Lui in NJ - all a bit of a trip but it is worth it to get the surgery done right, as if the styloid isn’t removed high enough (and the C1 process shaved if this is needed too), then you might not get relief from your surgery. Here’s a a link to the Doctors List to look up the details of those doctors:
Doctor Lists – no discussion - Symptoms and Treatments / Doctor Information - Living with Eagle
And you might find this video by Dr Costantino helpful:
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Hello Jules,
Thank you kindly for your reply. I have reached out and sent the CTA with written notes from the radiologist. I will certainly reach out to the other surgeons you have recommended. I can no longer fly because I get violent swooshing feeling and can’t take that. So my spouse and I will need to drive, but we are willing to go anywhere. Thomas Jefferson Hospital is in-network with my private, commercial insurance, BCBS, so hopefully the other two medical centers are also in-network.
Thanks again for this information – much appreciated. Also, is it normal for the patient to do all the heavy lifting and contact these academic centers/hospitals on our own? lol. My neurologist wants me to get surgery at nearby Emory University in Atlanta and she doesn’t seem interested in anyone else. So I was just wondering … I don’t see Emory on the “top” list of anything regarding this type of surgery.
Rita
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Jules, I meant to say I have already sent the CTA image and the radiologist notes to Dr. Cognetti at Thomas Jefferson Hospital. That was sent by Fed Ex and was received yesterday. I will reach out to the other two doctors you recommended.
Thanks again – this is very, very helpful.
Rita
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@Rita13 -
Sadly the answer is YES! In cases like yours, it’s up to you to be your own best advocate & push for the best care possible. That can also require following up when you don’t get call backs or emails in the expected timeframe. The doctor who’s advising you to have surgery at Emory is obviously not tuned into the gravity of your situation. It’s critical for you to have surgery done by a doctor/surgeon who is very experienced with the surgery you need. You’ve got the list of the doctors we know of who are the best in the eastern US. Getting appointments with any of these doctors can require a bit of a wait so I highly recommend you ask to be put on each one’s cancellation list as that may help move your appts. to earlier dates.
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Thank you so much for this information. It didn’t take long for me to realize that Emory is not the answer. They have a good reputation for skull surgery but they are experts in cancer, not for the problem I have. I almost feel like I know more about my issues than she does. lol. But interestingly, they DID make it a point to let me know it’s likely I will still have chronic migraines and they will be my provider for the Botox treatments. lol. But anyway, thank you, I will follow your advice. I get scared about this, and have so many concerning symptoms, including the fact that I can’t even feel my life side when I exercise. I will absolutely follow your advice about being asked to be on the waiting list. I hope one of these surgeon offices will call soon just to get the ball rolling.
Thanks again for your help and especially clarification that we’re all basically on our own. I’ve always been up for a challenge and so this is just one more opportunity, I guess. That’s the way I’ll look at it. I have a supportive family, including a devoted spouse, so that helps … thank you for your help.
Rita
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Once your vascular compression(s) are relieved, over time, your migraines should reduce in frequency & intensity, & ultimately hopefully they’ll go away completely. The resolution of headaches can take some months after surgery so surgery isn’t necessarily a quick fix. When there has been vascular flow obstruction, into or out of the brain for some time, it can take time for the body to readjust to the new level of blood flow & for affected nerves to heal.
We’ll look forward to your updated & learning who you decide to have do your surgery. 
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Thank you again for this information. I loved your update about my migraine situation as I’d be elated if that could come to an end!
Here’s what findings of the radiologist report. Don’t know that it provides more details than what I’ve already shared, but maybe this official report can clarify.
Styloid processes; The left styloid process is elongated to a length of 3.4 cm, extending to approximately the angle of the mandible. There is mass effect on the left jugular vein, which is almost effaced between the styloid process and transverse process of C1. On the right side the styloid process measures 2 cm in length and there is partial compression of the jugular vein.
The symptoms I am most concerned about, and have shared with my neuro group for many months are:
- I have severe burning/punching right eye pain
- I cannot feel left side of my body (torso) when I exercise. it’s light and airy; no feeling at all
- When I’m working out, and breathing a little hard, my throat hurts – sharp pain.
- Neck pain when turn to the left
- Vertigo/dizzy spells and have had this for several years so maybe not as relevant?
I hope I am not consuming your time, I promise not to ask so many questions going forward! Thank you, much appreciated. I will keep you informed when (hopefully) I hear from some of these specialists.
Rita
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Feel free to ask questions! If we can help, we will…
Eye pain can be caused if there’s carotid artery compression, and also the trigeminal nerve can also cause pain in that area. If you have IJV compression it can sometimes compress the ICA as well. I don’t know about the loss of feeling in your left side, whether that’s a carotid compression symptom, whether it’s a vagus nerve thing (which is also in the carotid bundle with the IJV and ICA), but members often experience symptoms from the vagus nerve when exercising. Nack pain on turning is common. The vertigo and dizzy spells are common with IJV compression, and also carotid artery compression.
Sometimes the C1 causes alot of compression as well as or instead of the styloid process, so so might need shaving. The doctors you’re contacting will be able to do this if needed, which I would guess they probably wouldn’t at Emory. As you have some compression both sides, it might need both sides to be removed before you get full resolution of your symptoms, but sometimes just having one side removed is enough.
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You’re so helpful and so smart. Thank you. I’m going to read this again. in fact over and over, lol. I bet I won’t get this much valuable info from Emory.
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Jules, in reading again what you’ve explained very thoroughly (based on the radiologist report) is it your opinion that doctors I’m contacting, not including Emory, will likely consider me a good candidate for vascular surgery? And am I correct in saying this might be a more complex surgery, although doable for the best surgeons? Also, you might have said this before, but is there a timeframe I might expect for confirmation that I qualify for this procedure? Thank you.
I hope that the doctors will help you, the ones we’ve mentioned are the best for vascular ES, but obviously without seeing the scans (and not being doctors!), we can’t say whether you’ll need a C1 shave as well as the styloid removed. It’s more complicated than the usual ES surgery, because the styloid needs to be removed as close to the skull base as possible to remove the compression on the IJV, so as well as being close to the blood vessels, the cranial nerves are very close. Some ES surgeons only shorten the styloid to average length, which then isn’t enough to remove the IJV compression, which is why we suggest that you see a VES doctor. For them the surgery is definitely doable.
I can’t remember how long the waiting times are for each of the doctors I’m afraid, hopefully other members who’ve seen them recently might be able to help with that, but whoever you get an appointment with you can ask to be put on their cancellation list and you might be lucky & get seen sooner!
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OK, thanks again! Really appreciate your help and advice.
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Hello Jules,
It’s me again, Rita. I received a call yesterday from Neurosurgeons of New Jersey. I sent the CTA and the radiologist notes to them last night. This morning I received a call that they also want a CTV of head/neck w/wo contrast.
Before I was able to speak with you about the best options – Philly, NYC and NJ – I had read from some of your members that Dr. Hackman of UNC had been very helpful. So I immediately reached out to him and sent the CTA and clinical notes he requested.
I just received a call from his office and he wants to see me on Aug. 13 for a consultation and then he wants to perform the surgery one week later. I told his assistant I definitely want to see him in North Carolina on Aug. 13 but I’d like to see what we discuss before committing to surgery right now today. I felt nervous!
What I’m trying to do is find the fastest way to get the CTV scheduled for Dr. Liu. My neurologist group, as I said, wants me at EMORY! I know Emory can’t do this, but they are slow to get me a referral to a local ENT that Dr. Liu wants for the CTV.
So you think I should call Dr. Liu office, or email Janet, the person I’ve been speaking with, to let her know my update? I just want Dr. Liu to see the CTV and give me an opinion of the type of surgery he would perform.
UNC: Dr. Hackman would perform a Bilateral Styloid Ectomy.
Is this what’s needed, do you think? Gosh, I am nervous … I want surgery but I want whatever type is best by the most experienced surgeons.
Do you have thoughts or advice?
Thank you, thank you.
Rita
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Dr Hackman is very experienced with ES and has done lots of successful surgeries for members, but he’s not one of the doctors who specifically deals with Vascular ES. He does remove the styloids pretty high up, so this might be enough to decompress the IJVs, but I can’t say for certain, and if you were to have compression by the C1 vertebrae as well, he doesn’t shave that so you could find that the surgery isn’t as successful as it could be. So I think it’s certainly worth still having the CTV done and seeing Dr Lui’s opinion on whether the C1 process is causing compression before you decide for sure. So I would see if Dr Lui’s office are able to get you referred for the CTV , and maybe one of the members who’s seen him could suggest where you could get the imaging done? You could send a private message to ask @AshleyKim who had surgery with him, here’s her post:
Surgery experience - General - Living with Eagle
And @Emmaann , here’s her post:
I officially have my appointment with Dr. James Liu - General - Living with Eagle
I hope that you can get the scan you need, I’m surprised that Dr Hackman was able to see you that quickly, I thought his waiting times would be longer!
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Thank you for this feedback! My neurologist office ordered the image testing and I have that Thursday at 9 am. I remembered what you said about Dr. Liu which is why I did not agree to quick surhrry. I should have the info to NJ by Thursday night or Friday morning. I really appreciate all the info you sent, I will reach out to the others ASAP. You’re an amazing person, so helpful and generous with your time.
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@Rita13 - When you have your consult with Dr. Hackman, it’s worthwhile being direct about your concerns that a styloidectomy alone might not be enough to allow your IJVs to open. Ask his opinion about that & whether he thinks the transverse process(es) of C1 are playing a significant role in your IJV compression. This is both so that he knows you know his surgical approach might not be enough & also as an educational tool for him to reinforce that sometimes styloidectomies aren’t enough in situations like yours.
The other advantage of having surgery w/ someone like Dr. Liu is there can be soft tissues below the IJVs which are causing compressions, & he is likely to look for those (at least ask him when you see him if he does) & will remove them so your IJV(s) has/have every opportunity to open fully. Obviously, a surgeon who is just shortening your styloids won’t look beyond skull base problems w/ the vascular system.
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This is all very good information. I’ll do my best to raise the questions and hopefully get all the answers I need. I’m going to need to study up more on what this means, how he’ll perform the surgery, and what he’s capable of doing. I am an easygoing person and trusting but not stupid so hopefully I can prepare myself and ask the smart questions. I so appreciate all this info from you and Jules. I wish one of you, or both, could come with me. lol. I will do my best. I do a lso think NJ will want to move forward also. So I should have a couple of options. I have a sister who’s the little bulldog in the family and although she’s younger than me, she likes to take charge, as always has. I know she could ask these very direct questions and would love to come. She’s a high school principal so she’s not shy. Anyway, thanks, I will write this all down. My spouse will be with me, hopefully between the two of us we can get all the relevant information we need to make the best decision.
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Great that you’re getting prepared 
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I’m trying, Jules.
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