This is my first post here. I’ll put some background info (IJV) farther down. I’m here looking for non-invasive testing for blood flow. I see Dr. Hauser’s videos about ultrasound imaging for blood flow and vagus nerve compression in different head positions. Does anyone else do this kind of testing? Is there a name for this?
I have CCI/AAI. I just found out that my symptoms are greatly reduced when wearing a cervical collar, but it’s not good to wear all the time. I’m working on very gentle neck strengthening and posture awareness/correction with my EDS/CCI aware PT. I was thinking that I could help reduce symptoms if I knew my positional blood flow. What do you think about this idea?
Other info:
I got a CTV recently which confirmed left side IJV compression. Doc suspected that right side was compensating just fine, but ordered a dynamic venogram because I’m symptomatic. He suspected that my symptoms could be coming from something besides IJV compression, and didn’t want to do styloidectomy if he could find another cause for my symptoms.
I have dizziness, brain fog, fatigue, headache, nausea, constipation. But I can also putter around enough to take care of myself and family most of the time, even drive around town sometimes, but I’ve lost capacity for all of my active hobbies. I am very sensitive to medication and treatment, so I am hesitant to try something that could risk losing more capacity. Even getting the CTV was difficult for me, so I’ve chosen not to get the dynamic venogram right now (it requires sedation and catheter and contrast) since I’m making progress working on CCI.
I’m also open to ideas about continuing to investigate IJV compression vs CCI. I realize this is an IJV/Eagles forum. But it’s never just one thing, is it?
@Paradoxinmotion - Welcome to our forum. I’m glad to read that you have a PT who’s EDS/CCI literate & is helping you w/ posture & neck muscle strengthening. Those are great places to start helping reduce your symptoms non-surgically.
Your symptoms definitely fit what we see w/ IJV compression among our members who have it. Have you seen Dr. Najaki? He will definitely request a venogram w/ manometry, so more invasive, but Dr. Mehta, the interventional radiologist who does them for Dr. Nakaji, does them w/ the patient awake. I don’t know if that would be more “palatable” for you. •Dr. Peter Nakaji, https://www.scottsdaleclinic.com
Scottsdale Neurosurgery Specialists - 602-313-7772
An ultrasound like the kind Dr. Hepworth refers his patients for would be your best bet for a non-invasive test. It measures blood flow velocities as various points between the skull base & collar bones & uses the valsalva maneuver. Normally it’s not done dynamically but could easily be done w/ head turns. The following was posted a while ago, & some of our members have tried to get their local ultrasound techs to follow the directions but w/o success. The following information doesn’t suggest the places along the IJV where the valsalva maneuver is used, unfortunately. Perhaps it’s where compressions are suspected.
Dr. Nakaji reviewed my CTV and sent me to Dr. Mehta. I didn’t realize Dr. Mehta doesn’t use sedation for the dynamic venogram. I’m still not enthused about the catheter and contrast. If I stop getting results in PT I’ll consider it again.
Thanks for the additional info on Dr. Hepworth’s ultrasound protocol.
The venogram is not done with heavy sedation. You are awake. They give you very little sedation as you need to be alert during this test. Many tests are not accurate if heavy sedation meds are used. I’m having to repeat mine. Also, for what it’s worth, there’s a huge difference I have seen in my imaging results when contrast is not used. It’s like night and day. I realize, we are all not fond of contrast and dyes, but in many circumstances it’s overwhelming needed to get an accurate picture.