Hello all,
They found an arachnoid granulation in my catheter venogram (in addition to my IJV compressions: L- 95% compressed, R-50% compressed)
Has anyone had experience with this? I’m wondering if this is why my symptoms are so severe.
Symptoms: brain fog, dizziness, nausea, unable to sit or stand for over 15 min, headache, severe head pressure, light sensitivity, homebound, and bedbound.
Your symptoms are mostly due to your IJVs being 95%/50% compressed & most likely your vagus nerve, too, as it shares space w/ the IJV between the styloid & C1 so also gets compressed when the IJVs are.
We’ve had other members with arachnoid granulations but I don’t recall their significance. I hope someone who’s got more experience with them than I do will share what they know.
Thank you. Does the symptom of not being able to sit/stand for long sound like JVC? I think I may have CCI also. Wasn’t sure if the pressure when standing or sitting was one.
Yes, head pressure when standing or sitting is a symptom of IJV compression. It’s pretty a pretty miserable situation as you’re experiencing. You can try icing your neck & resting/sleeping w/ your head elevated to help relieve your head pressure. Also using your computer w/ the screen at eye level & holding your cell phone at eye level can be helpful as looking down for any length of time can cause IJV compression.
Usually with IJV compression, being more upright alleviates the head pressure rather than laying flat, but because there’s high intracranial pressure, it can cause a CSF leak (sometimes noticeable as clear fluid coming from the nose) , which can then cause the intracranial pressure to go too low, so you’d find you have bad headaches & need to lie flat. Although I’m sure there have been a couple of mentions of people finding laying flatter still helped with high pressure…but have a read up about CSF leaks & low intracranial pressure & see if that fits?
I don’t know about the arachnoid granulations either I’m afraid.
it is definitely possible to get symptoms and intracranial hypertension from an an arachnoid granulation compressing the venous system, especially if the dominant side is compressed. i had jugular decompression (right) surgery in february and felt worse not better after - the only lasting relief i got was brain fog improvement. recently they discovered i had an arachnoid granulation compressing my transverse sinus (right) with a gradient of 15 mmHg in my last venogram. and i just had it fixed by compressing it with a stent (the stent opens up the compression and compresses the arachnoid granulation, which then re-absorbs into the body). my arachnoid granulation was in a similar spot to yours and my venous pressures normalised after stent placement. my stent starts in the transverse sinus and extends through my torcular and into the sagittal sinus. as for symptom improvement i can’t say yet…it’s only been 5 days and i had complications during the surgery which are probably masking any improvements for now, but hopefully once i’ve recovered there will be some noticeable improvements. so far my pulsatile tinnitus remains despite 2 stents, and jugular decompression so that one is a real mystery.
Thanks for that info @stingray , I hope that you feel better soon & heal well from now on, sounds like you’ve had alot to deal with! Who did your stent surgery do you mind if I ask? 
Thank you for your response. I sure hope you’re feeling better soon after your surgery.
Just so I’m understanding this correctly. The first step is the decompression, and then since there was no symptom relief, they tried a stent? And now another surgery for decompression?
thank you!
i’d say there is no one correct order of fixing things…it would depend on each individual and the dr’s opinion. mine was in fixed in the order of discovery. first they discovered i had transverse sinus stenosis which was stented in 2023, then they discovered my jugular was compressed which i had decompressed early 2025 and then they discovered the arachnoid granulation which they just stented (placed a stent next to the one placed in 2023). now it’s a wait and see process of what improves and if anything gets worse and needs further intervention.
I’m also hoping this last surgery is the final one you need, @stingray. You have been through a lot!!
