Been reading a lot here, but this is my first post. I have bilateral IJV compression and HAD pulsatile tinnitus (that’s what started me on this path). The weird thing is the pulsatile tinnitus has gone away. My neurologist who discovered the compression of my veins during an angiogram, is perplexed. She said either the veins now completely blocked, which would explain the intracranial pressure and pressure on my optic nerve, or the blood is exiting another way. I was wondering if anyone else has or had a similar experience?
@Johnny99 in my non-expert opinion, I don’t think it would mean that your IJVs are now completely cut off. However, when IJVs are very compressed people develop collateral veins (i.e., other veins get larger to help compensate for the IJVs). These collateral veins usually run down the back of the neck.
With pulsating tinnitus I think you want to check for any carotid (internal or external) compression. External carotid arteries supply blood to the ear. So if you have inconsistent pressure gradients going to the ears this could be a culprit for pulsating tinnitus. If you have elongated styloids, the tips can put pressure on the ECAs.
Do you happen to have your CT imaging on hand? I can help you look through it! I can show you your IJVs, ICAs, and ECAs.
I don’t have my scans. Good to know that IJV might not be completely shut down.
You say the other veins run down the back of my neck- that makes a lot of sense that it could be happening to me as I often feel a stone pulse and discomfort when I look straight up or put pressure on the back of my neck when lying down.
I will try and get my images once I’ve been on long enough to post pictures.
Sounds about right! Looking up is also when your styloids would be applying most pressure on your ECAs, so it’s possible that you’re not looking upwards as much as you used to be to avoid the back of head/neck pain, which in turn has reduced the amount your ECAs are compressed and causing pulsating tinnitus. That’s just my theory though!
I’m still investigating my situation, but I wanted to share that I show IJV compression on CT, but my pulsatile tinnitus comes and goes. It can disappear for long stretches (several months). When it first began though, it was constant and bothersome for over two years straight. Mine is compressed by the C1 transverse process though, so it could be spine shifting on and off. I assume yours is the styloids?
I had pulsatile tinnitus from IJV compression; I didn’t have it all the time, laying flat would bring it on, any exercise or bending down…it does sound like some collateral veins are maybe taking over the venous blood flow as others have suggested…
@Johnny99 my pulsatile tinnitus has also gone away. I have no idea why. I had a venogram (dynamic) after it went away and it shows mild obstruction in neutral position and more severe obstruction when head turned. I have no explanation as to why it has gone away. I have constant tinnitus though
So I’m wondering if the “spine shift” may be the reason the pulsatile tinnitus went away- could that also mean I have less compression of the IJV? I have an Angiogram with the doctor that discovered the compression on the 20th, so I’ll find out- it will be a dynamic one where she will measure the pressure before and after the pinch in the arteries. I’ll report back.
If you’re having only an angiogram & not a venogram also, @Johnny99, then your IJVs won’t be looked at, only your carotids & potentially other arteries will be. You want a study that will look at either just the veins or both veins & arteries. Since it’s your IJVs that have been noted to be your problem, those should be emphasized when you see your doctor on 8/20.
Headaches, brain fog, lightheadedness/dizziness, neck muscle tension. and fatigue.
When I went on diamox most of the symptoms got better- still had fatigue. But the diamox caused kidney pain. I’m off right now to prepare for the angio on Wednesday.
