This Is MS Multiple Sclerosis Community: Knowledge & Support

HappyPoet, thanks. I worry about you being a guinea pig in any way! The second one that I posted looked like a successful sinus-to-IJV bypass. Is it a vascular surgeon or a neurointerventional radiologist or a neurovascular surgeon that's needed when it's up that high? And if the sinuses can look like that in normal people (I checked on that, yes, huge variability and lots of research on it, it's a much more beloved area of interest to researchers because of sinus thrombosis than anything to do with the jugulars, which get no respect, get ligated off or used as spare parts for grafting other areas, lol.) ... if the sinuses can look like that in normal people, then maybe restoring proper blood flow in the jugulars and azygous will be enough.

Lyon, that one that you commented on, it was from the jugular to the femoral vein!! So from the neck to around the belly button? It was a superior vena cava bypass. No, I'd prefer not to have artificial inner plumbing of that magnitude, there must've been a need for it. But if our options for grafting are saphenous vein or teflon tube, it's interesting to know that a third option is a saphenous vein inside of a teflon tube.

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That is correct Lyon.
Yes, it was a very traumatic time, he had complications from a network of extra arteries (not sure if these are called collaterals as well??) but essentially he had so many extra routes for blood flow to compensate for his problem in his aorta. The constriction was after the outflow to his head & upper body but before his lower extremities were being satisfied by blood flow - thus the network. One of these arteries was cut when they put in the drain tube after his surgical procedure & it was bleeding profusely - could not keep up with transfusions. They had to take him back to OR to find where the bleed was coming from - all worried that it was the worse case scenario & it was the repair that was bleeding.... thankfully not, but it was an extra long day for the surgeon & for us!
So much I read here is like deja vu, including the comments of less fatigue. You know, he was too young to tell us how much different he felt after the surgery, but I can still picture him just after he had recovered but during the time we still had to watch him for bumps etc (stitches). He had soooo much energy he didn't know what to do with himself, he literally jumped on the spot. This was the child that could not ride a bike with training wheels, around the block. Once he graduated to his own bike (when he was too large for the bike seat on my bike), that was the end of biking for us, because he just COULD NOT DO IT. I pushed him to ride his bike - felt guilty in hindsight, but he was winded & just couldn't do it. It was amazing to see the energy he had after! And yes, almost 25 years later, he still has teflon within his aorta wall. He has a slight bit of turbulance because there are ridges in his aorta from the scarring, so he needs to take antibiotics ahead of dental work to lessen the risk of endocarditis. That is really the only thing that he has to remind him/us of this time. He now sees a cardiologist every 4 years for follow-ups, but is otherwise a healthy young man.

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Dlb, thanks for sharing, those parallels are really interesting. And it's good to know that teflon in the body can hold up like that.

All the best to your son. What a thing to go through as a child, and as a parent.

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Yes, it might be interesting to look at patients who have had a jugular ligated, preferably three decades prior, to see if an MRI would show indications of demyelination or slowed cerebral perfusion. I don't know if they would or not, they wouldn't have the standard two obstructions, just one.

cece
did you know that i had the jugular vein of my wife ligated about 30 years ago. I have mentioned that in the past. not sure about on TIMS.

for pulsating tinnitus after second pregnancy. what the heck, i thought, you dont need both jugular veins. she has not developed any symptoms that i can see. But she hasnt had an MRI yet

Yes, Michelle has mentioned this, although I wasn't thinking of it when I posted. It is less "might be interesting" and much more personal when we are talking about a real person. I am glad she has not developed symptoms, I would think she should be fine because of the body being able to work around one obstruction, just not two.

Thank you for sharing this, I wish all the best for you and your wife.

I'm very fast. And very invested/enthusiastic about the subject matter.

I think you are right, Lyon. Is the neck the most tightly packed area of the body, or would that be the skull and its contents? Perhaps that's part of the problem, one tightly packed area (the neck) impacting on another tightly packed area (the brain).

What problems do you foresee, Lyon?

Clotting off of veins is a big one that we have seen. I hate that any of us have suffered this, it's a cost of being pioneers, because once the doctors get the anticoagulation standardized and the primary doctors on board, even in resistant Canada, there will be less of this.