This Is MS Multiple Sclerosis Community: Knowledge & Support

Hi
How I have informed you after second my surgery in Katowice it was worse. The reflux was made in the right vein as additional thing. You can see it well on the very film http://www.ccsvi-ms.pl/video4.avi I looked all over the world to find the possibility o valve transplantation. In the mean time my body managed to solve the problem itself. Professor from Israel who came to Warsaw to made my surgery said that it "would be a crime to make the transplantation when the problem was solved itself". But I am still not well and it is very simple why. With such a large diameter of jugularis it must be still not good. Blood from the brain drains not as the result of preassure made by heart but as a result of the vacuum. The vein was wide and was still bolstered by pathological jogularis angioplasy. In this valve the flow was minimal so the blood swirling years at a vacuum (as in the effect of draining a bathtub with water - after 58 secundes in my case - says professor Haacke http://www.youtube.com/watch?v=wYWmsRnuL44 ) expanded my vein. This may apply to many patients, which do not improve after angioplasty. I already have a date for an open operation to reduce the diameter of my right jugular vein. When the diameter is too small the blood does not leave the nervous system and it is bad, but when the diameter is too large is very bad too.
Regards
Rici

Rici--you make an important point, and thank you for sharing this.
I worry about people who are having valves ballooned to increase flow. Dr. Chung's research has shown that elderly with malfunctioning valves, distended jugular veins and reflux develop white matter lesions. It is all about correct flow in a closed loop. And working valves are needed for that process to prevent reflux.

http://onlinelibrary.wiley.com/doi/10.1 ... 22276/full

(In Jeff's case, he has working valves, and had hypoplasia of the dural sinus and left jugular, which has been helped.)

The truth is that some, maybe not all, will be helped with vascular intervention. Some might be better left alone, as Dr. Schelling has said time and again. I wish you hope and health, Rici--
cheer

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

Rici has your azygos vein had any treatment?

Cheer,

The valve thing is still something that seems to split opinion in the medical community, it certainly is an oddity especially as upwards of 10% of people are born without jugular valves of any kind.

I did question Dr Reid about this when Emma was treated in Edinburgh and he certainly didn't feel there would be any adverse effect of not having them apart from Emma not being able to be an astronaut etc.

Interestingly Emma had a malformed left jugular (I assume that's what you're referring to as hypoplasia), it was about half the diameter of what would expected to be normal.

It was ballooned and the vein opened as much as possible, but he certainly did err on the side of caution with it.

Cheer How is Jeff's right jugular? Does he have any flow in it?
How is he feeling these days x

Dear Rici,

We have you in our prayers and hope the operation is successful.
Please let us know if you need anything, and please keep in touch.

Warm regards,
Bronek & Pam

It's an interesting point. My valves were monsters, they were causing near complete blockage in one jugular and complete blockage in the other. It would seem in my case that I had far worse reflux with those valves intact than I would with them ballooned. I also do not know, on my right side which had fused leaflets, if they may have survived the ballooning and functioned? Or in my left jugular, which had two sets of valves, with the lower one possibly normal or near normal, if that lower one survived the ballooning?

I could see there being more question if the stenosis was small, such as a 30% or 40% stenosis. Or if CCSVI were something other than primarily a condition of malformation of the valves, from what many of the doctors are saying.

Rici, wishing you all the best, this is an unusual fix that you are describing, may it work as planned. I am confused, if the body solved the problem itself, if your doctor in Israel might not be right. But we all want to feel well.

Hey LR,
don't want to hijack rici's thread, but Jeff is great. His right jugular was fine since two years ago...it was his left side that had a stenotic dural sinus, so once his left jugular was opened, and he lay down, he heard the blood flow whooshing with every pulse. It went right by his cochlea and was really annoying. He was happy to have good flow, O2 and relief of fatigue, but hated the sound. But it's been successfully opened, and he's now really happy, with two functioning jugulars and no sound. We hope it stays that way. So far, so good. I've asked him to post. He keeps promising...

Cece--your case was very different, since you had narrowed veins and no flow...I'm referring to distended, or stretched out jugulars, which is what Rici had...he had reflux even with no valves, something very, very different than most people. Dr. Schelling calls these venous back jets, and we just don't understand them yet. But this is something that needs to be noted by the IRs, especially in older patients, like the ones Chung studied.
cheer

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

How big would a stetched out or distended jugular be, just in general?

To Cece: This surgery will take place in Poland in Warsaw.

To all of you: I will inform you all fluently. My surgery will be soon. It is good I have the hostpital which is agreed with making such a surgery. My surgery will be open with full anesthesia

Regards
Rici

I think our brains and bodies learn from birth, development, and throughout the changes of life (growth, adulthood, aging, etc.), how to work with the available moving parts: muscles, valves, blood, joints, bones, and so on. Maybe that's why some people are athletic and good at physical work and others not. I think of it as physical intelligence. So you could say my veins have gotten older, and more brittle, and my equipment has failed, as well as my nervous system and brain failing to learn how to effectively live with the changes. It seems we are not fighting invaders except when our CCSVI has made us vulnerable. If I have reached adulthood without a jugular valve, I must have found a way to circulate blood pretty successfully without it.

Some people seem to be able to tolerate being upside-down a lot better than others (perhaps the ones with no valves?). It is, I think, very audacious to think you can predict all the variations you will see inside, with dye and X-rays. Humans are not stamped out like ipods.

Similarly, it may be audacious for us to think we can fix every, or even most problems we will encounter. Especially with drugs.

_________________
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'_MS' is over - if you want it
Patients sans/without patience

Ricci and Cheerleader, you raised an excellent issue and I think this should be examined more deeply. Do I understand correctly that it is bad if either the diameter is too small, or when the diameter is too large as reflux can happen in both cases? IRs focused more on the too small diameter as a problem so far and not considered the latter.
Ricci, I am not sure if I understand correctly what happened in your case. I might have missed your earlier post. Did they dilate your valve or/and your IJV? What was your original problem and how did it change? Did you have a reflux before the operation or only after due to the distended vein? Wouldn't it be a problem for everyone as IJV, mainly the right one, has quite a big diameter?
As for Chung's report, I could only saw the abstract and it says that "People with severe jugular venous reflux exhibit more severe age-related white matter changes, especially in caudal brain regions. We also demonstrate age-dependent jugular venous reflux effects on the severity of age-related white matter changes. These findings may provide new clues into the pathophysiology of age-related white matter changes". So I am not sure if his report says anything about the distended IJV or only about venous reflux generally? I agree that it is all about correct flow, but isn't our problem (CCSVI) about the lack of correct flow that we try to solve? Does dr Chung say anything about the role of valves? Yes, working valves are important, but many IRs, like dr Sinan, think that our stenosis are due to not properly working valves. This is why they try to dilate them or break the annulus. So, which is better to have a not properly working valve or to have no valve?
It might be worth sumarizing all these issues with valves, scarring and thrombosis and ask dr sclafani about it. As far as I can see most of our problems raised on different threads on this forum came down to these there areas and we talk about them in great length but not getting a comprehensive anwser from experts.
Rici, I really wish you a succesful surgery and I hope your problem will be solved soon.