Hi everyone! I was recently diagnosed with VES after nearly 18 months of fighting Kaiser and advocating for myself every step of the way. I feel like one of the lucky ones after some of the horror stories I’ve heard about how long it has taken others to be taken seriously by the medical system, but anyway, that’s not exactly why I am posting.
I’ve been wondering how much of my life may have been affected by compressed IJVs long before the rush of symptoms started for me last year. I’ve had low energy, chronic fatigue, and a steady decline in my physical and mental abilities for many years. This compression had to have taken quite awhile to get to where I am today (~3mm on both sides). Could there be a parallel with my lived experience?
Has anyone else noticed something similar over time? Would love to hear your stories!
Welcome to our forum! Good for you for being a solid self advocate, @sierraismagic !
The list of symptoms you’ve mentioned as having prior to your ES diagnosis are all known on this forum to be among those seen in people who have ES w/ IJV compression. Not everyone has all of them but in a worse case scenario, all are present.
Do you by chance have hypermobile Ehlers Danlos Syndrome or have you ever looked into that diagnosis?
There is a group of 3 surgeons at Kaiser in Sacramento who do IJV decompressions. I’m not sure their surgeries have been quite as successful as those of some of the non-Kaiser surgeons we know of, but they have helped some of our Kaiser members. In case you don’t know who they are, here are names & contact information:
•Dr. Brian Jian (Neurosurgeon) & Dr. Balough (Neurotologist) & Dr. Ji (Neurosurgeon/Neurointerventional Radiologist) - KAISER SACRAMENTO, 6600 Bruceville Rd, Sacramento, CA, 916-688-2000
I had more of the ‘classic’ nerve pain symptoms which I had for a little while before I was diagnosed, but as I think I mentioned in my pm I had jaw pain and ear pain which I put down to wisdom teeth for years, & these have gone since surgery. But I didn’t get the vascular symptoms until later, so had a year roughly to wait before surgery. For some people they develop collateral veins to take the flow when the IJVs are compressed, so compensate for the IJVs, and so some people can have quite severe compression but not be that symptomatic. Others can be very symptomatic but the compression isn’t as bad…
It’s good that you’re seeing the doctors @Isaiah_40_31 mentioned already!
@sierraismagic It’s an interesting question. I often wonder what my first symptom really was. I used to think it was the sudden onset of pulsation tinnitus about 4 years before I finally waded my way through all the different doctors and nay sayers and had surgery. But now I think it may have started with insomnia years before that given that the IJVs are doing most of the draining when we are supine. For years I could fall asleep and then I would have this feeling of something trying to urgently wake me and I would wake up, go back to sleep and have that repeat throughout the night. That has not happened once since my second surgery and I only have an occasional disrupted night’s sleep mainly if I’m stressed.
At quick glance hEDS doesn’t look like something I might have but thank you for prompting me to take a look!
The surgical team you mentioned is who I am in line to be scheduled with at Kaiser. Dr. Balough is expected to retire this fall so I may be paired up with his replacement if I cannot be scheduled in time.
Sudden PT was also my first symptom. I’m happy to hear you no longer suffer from the insomnia issues. It sounds like you’ve had a couple of successful surgeries?