Hi - I am new to this forum and thank you so much for adding me. I recently had a CT Angio of my head and neck. I am struggling to fully understand the findings. My symptoms are pulsatile tinnitus and headaches, mainly. Here is what the report says (I don’t have access online to the actual scans).
Narrowing of the bilateral proximal internal jugular veins posterior to the styloid processes immediately below the skull base, left greater than the right - There is narrowing of the bilateral proximal internal jugular veins posterior to the styloid processes, left greater than the right resulting in reduction in the transverse diameter of the left internal jugular vein to approximately 2 to 3 mm.
Mildly low-lying cerebellar tonsils.
My neurologist who ordered this test has referred me to Dr. Cognetti in Philadelphia. My appointment is 3/10 and I want to make sure I can learn as much as I can about these findings before I have my appointment.
It sounds as though the styloid processes are compressing the internal jugular veins both sides, worse on the left side, so you have vascular ES. It can cause pulsatile tinnitus, headaches (especially after laying flat), dizziness, off-balance feeling. When the veins are compressed, the blood gets pumped into your brain okay, but because the veins are compressed it can’t flow away from the brain as well, so the pressure builds up inside your head, causing the symptoms I’ve mentioned. I had this, & had great results with surgery, although a few members have found the veins don’t re-open properly, so occasionally they can be re-inflated with a balloon or could need stents putting in.
It mentions in the report that there’s compression immediately below the skull base, which means that to have good results the styloids would need to be removed right back to skull base, which I don’t think Dr Cognetti always does. So if you do see him, you would need to ask him about that- if he leaves a small amount of the styloid process, it could still compress the vein there & you could still have some symptoms. He is very experienced, & many members have had successful surgeries with him, but as you want the best results possible from surgery, it’s worth checking.
Here’s a link to the doctors list: US Doctors Familiar With ES, Current List - Symptoms and Treatments / Doctor Information - Living with Eagle
Dr Jason Newman is also in PA, I think he takes the styloid right back to skull base, so it might be worth seeing him for another opinion? He’s also done surgeries on members.
I hope this helps!
It helps a lot. Do you think I will need to have surgery? I don’t know if mine are compressed too much or if I would just be able to live with the symptoms, which are bad but I really don’t want to risk a surgery especially around my head and neck if I don’t have to.
There are also risk in leaving the styloid processes in, especially with vascular ES. It is very rare; but strokes can be caused by compression of blood vessels, causing clots to form. Intracranial Hypertension can be caused by the compression of jugular veins, & those symptoms can be horrible. It’s a personal decision as to whether you have surgery or not, but if you have surgery with an experienced surgeon, then the risks are much lower. In the US most surgeries are carried out as a day case.
Ultimately, there is no cure for ES other than surgery.
Where can I find information about the actual surgery itself, how long it takes, will I have a hospital stay, what is recovery like? You have been so helpful I don’t know how I would figure out this process without this forum
I will answer your questions here though the answers to all the questions you’ve asked are on our forum. The magnifying glass icon above right is a very useful tool. Click on it & type in for example - surgery what to expect & posts about surgery will come up. You’ll get a wider variety of information that way.
There are YouTube videos of both the intraoral & external ES surgical approaches. A recent video done by Dr. Osborne in Los Angeles is a mini-documentary about the surgery of one of our members. I suspect if you are nervous about the surgery, watching these videos might not be a good idea because they are very detailed. If knowing what to expect will help ease your mind, then go for it.
Surgery is generally done in an outpatient surgical center so there is no hospital stay involved. A few insurance companies & Medicare do require surgery to be done in a hospital with a one night stay. You’ll need to check with yours to see what their policy is.
Surgery ranges from 1 to 2 hours depending on what the doctor finds once he makes the surgical incision. Sometimes the styloid is deeper into the neck than expected or nerves are wrapped around it which takes extra time & care to deal with. If there is calcification on the stylohyoid ligaments then those need to be removed as well.
The first week post op is generally the worst as days 3-5 are when the post op swelling is the worst. By the end of the second week, many people are able to return to work. It seems that most people start feeling noticeably better by 6-8 weeks after surgery & pretty darn good by 6-12 months post op. This is a major surgery & is not one that you will walk away from feeling fine in 2 days.
Jules made an excellent observation about the wording in your lab report regarding where your jugular compression is & a fair warning about Dr. Cognetti. He leaves an inch of styloid process behind when he does ES surgery. Having him do your surgery will not be terribly helpful since your compression is close to your skull base. Dr. Newman does remove the styloids to the skull base which is what you will need to have done to get relief from your IJV compression symptoms.
Yes I am a teacher. I will look at the description. Thanks so much for all of your help. I feel like I am going in to this appointment with Dr. Cognetti with a lot more information. I will ask him about his choice to leave some of the styloid and what that might mean for me.
