Hello, I’ve on and off the forum for about a year now, and we are slowly making progress with deciding the next thing. In a nutshell, I have many vascular compressions creating a multitude of symptoms, including every day all day headaches (many times severe), heart issues, gut issues, syncope and pre-syncope, drop attacks to name a few . . . After meeting various doctors and surgeons, so far the list of compressions are these: IJV’s on both sides, left brachiocephalic, right superior vena cava, May Thurner’s, Nutcracker and SMAS. So far, anyway – we trust there aren’t more!
We already met Dr. Fargen in June and had the catheter study done where he went through the veins from waist up checking compressions, measuring pressures, etc. He also did a lumbar puncture which was quite informative, too. In that study, he noticed both IJV’s aren’t just compressed at the top; they’re compressed here and there all the way down to C7. Dr. Fargen along with Dr. Hui believe the 4 cervical spine surgeries possibly helped contribute to the compressions, tho that’s partly speculation. Dr. When dye was injected at the top of the IJV’s, it didn’t drain down, except through the collaterals. Then he moved the catheter to the bottom of the vein and the dye went up the vein, on both sides. Dr. Fargen also noticed upon left and right head rotation both veins totally collapse.
In July, we had a couple telehealth visits with Dr. Hui. In those visits, he went over the imaging more in depth and discovered not only the brachiocephalic vein is compressed but so is the superior vena cava. “Ahh,” he said, “no wonder you have retrograde flow on both sides. The main veins taking blood back to the heart are compressed. Which makes the whole system work against itself, causing retrograde flow and high pressures.”
Dr. Hui and Dr. Fargen talked things over, then Dr. Hui did a write-up for us following their discussion. At first the idea was to open the IJV’s since the headaches and head pressure is so bad. But after seeing both major drain veins in the chest are anatomically compressed, they together decided the chest veins must be open first, to provide as much flow as possible once the IJV’s are ready to be opened. Dr. Hui said the shape the IJV’s are in make him highly doubtful that decompression (removing elongated styloids and C1 shaving) will be sufficient. Said because veins totally collapse like that from top to bottom, it’s likely a stent from base of skull down to C7 or IJV bottom valve will be necessary. That’s where my questions come in. How often is stenting necessary even after decompression, and not only a small stent but top-bottom length stents?
Stents make us drag our feet, but the idea of a “full length” stent makes it sound better maybe, that possibly it won’t migrate as easily…?
It’s probably getting the cart before the horse to ask these questions now, even before the chest compressions are fixed. All these things are a lot to think about and so decided to post here for any thoughts while we wait for Dr. Brooke Spencer’s opinion on how to fix the chest compressions.
And while we wait on Dr. Spencer, we’re working with Dr. Jordan Vaughn (recommended by Dr. Hui) to help figure out what’s messing up the vascular system so bad. Dr. Hui wonders if Long Covid could be at play and we should have results from blood work any day for that, plus a host of other vascular coagulation possibilities . . .
We appreciate the work that goes into this forum!
