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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