Quick tip: While you’re there, definitely check out the “Diseases” tab on his homepage. He breaks down the complex connections between vein compressions, ES, and intracranial hypertension perfectly.
Thanks for posting this, hopefully it’ll be useful for members who are being told their IJV compression isn’t significant!
It’s great that you keep finding these papers @TheDude , & you haven’t forgotten us! Are your vascular symptoms improving now?
Hi Jules, thanks for the kind words! How could I forget you? It’s my pleasure.
Yes, my vascular symptoms have improved a lot, thankfully. What I’m fighting now is the aftermath. I’m dealing with severe tension patterns and structural alignment issues caused by the 7 neck surgeries. Since the underlying problem went untreated for 15 years, chronic complaints like nerve pain and muscle tension had way too much time to spread and manifest. So fixing the mechanics of my neck and body is the next big hurdle. Unfortunately, this comes with some setbacks like herniated discs in my lower back or arthritis in my big toes joints, that makes everything a bit more challenging.
I’m asking myself and doctors how long recovery would take but there are no good answers so far. Once, I’ve heard an estimate that it might take one third of the actual time with the disease. I don’t know if that is an appropriate estimate but that would probably mean a 5 year rehab period, which is only halfway through now.
It is hard how the long term effects of ES can spread all round the body, I have quoted you to other members who are finding similar patterns across the whole body! Keep strong & keep pushing, hope you continue to improve
That article is so enlightening! So many statements are in there, that we as patients and caregivers have gut feelings about, and finally have them endorsed and validated by a doctor! If only we could have our disbelieving friends could read this article with open minds… but trying to persuade someone to believe something they’ve already formed a solid opinion on, rarely works. The truth always floats to the top- sometime.
@TheDude - Thank you for posting this interesting article! After having my styloids removed to skull base for vascular Eagle’s, I was still having symptoms I associated with IIH. The neurologists were completely dismissing these because I don’t fit the profile. Migraines, empty sella, balance and vision issues were written off as vestibular migraine. After 5 years of lingering issues and worsening pulsatile tinnitus, I convinced one neurologist to order more specific imaging, which showed transverse sinus stenosis on both sides. One side was stenosed and hypoplastic, interestingly the same side where I had a small IJV that would get squished between C1 and a styloid. A stent was installed in the stenosed dominant side transverse sinus so now the blood and CSF can get out of my brain efficiently.
I was doing more research on recovery times and brain health impacts and ran across a similar article that was more specific to sigmoid and transverse sinus stenosis, but also addressed the impairment of the glymphatic drainage system as a potential cause of several neurodegenerative diseases. The availability of cerebral vascular imaging is so important. I had to beg doctors to get a CT scan with contrast to see styloids, I have had multiple MRIs, but no one ever ordered cerebral angiogram/venograms until I badgered my current neurologist into it. Seems like that would be the first thing neurologists would look at with the kinds of symptoms vascular Eagle’s people have.
The stent is helping my brain feel better and work better, and hopefully the improved flow will keep it healthy and functioning for many more years.
@Catmd - What a journey for you! Thank you for sharing what finally helped reduce your symptoms. It is good to hear a positive stent story after hearing more often about failures. I also hope it will help your brain function into the distant future.
