This Is MS Multiple Sclerosis Community: Knowledge & Support

I think we need to pursue the endovascular approach as much as possible for several reasons.
1. Veins are tempermental. They can get down right petulant when disturbed. Especially when flow is slow. Of course, I am not a carpenter, just a plumber, but you must understand that the valves are in a challenging area, just below the clavicle. As such surgery can be quite challenging there.
2. Less invasive is good: it reduces the logic for resistance to treatment
3. Rapid throughput is essential: for the moment, it would take years to treat everyone (not saying that everyone needs treatment yet) given the limited numbers of operators.

lets figure out when the endovascular approach is not effective, then work out alternate therapies.

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The bulging area is below the jugular vein in the confluens of the subclavian vein and the jugular vein. The dark spot is nothing.



Very good question, indeed. I just got my new IVUS and I am hoping that it will help me learn what is happening to the tissue of the valve after annuloplasty. Preliminarily, it looks like it falls to the side.

yes, i agree: the problems are not over. This will be a life long issue

well,my statement was not that grandiose, but i will begin to think about how to make it so.

i was speaking about the tone of the conversations on ccsvi here. Less whining about neurologists' opinions and more discussion about how to move forward. About approaches to delivery of care, of details of techniques, revisions of angioplasty, etc.

dr sclafani,

as i read your tims thread everyday, i become more and more fascinated/excited about the possibilities to learn more about my vascular system. i think the tone has shifted because you have offered a channel for our Collective frustration to move into actual treatment options.

one can imagine the frustration of having this illness, then having this viable revelatory avenue of exploration/treatment, then have it thwarted by people who seem uneffected by the devastation and helplessness we pwMS experience on a daily basis, along with our immediate families, extended families, work associates, friends and communities. i suspect for each of us there could be hundreds of people suffering along with us. then there are the naysayers who created a virtual log jam in our stream of hope.

again i am struck by the metaphor of clearing the log jam and let the hope flow. And now you have a new IVUS to help with the endevour.

you offer us many tools to explore what was previously 90% complete suffering. for that and the shoulders you stand on, we are enormously grateful, regardless of the individual outcomes. (maybe i should not speak for others, this is true for me.)

i am more of a philosopher than a plumber, more of a social scientist. i have a hard time understanding and contributing to the more specific treatment brainstorming. i'll leave that to you, cece, et al. i have also been living with this challenge longer than most and have more disability than most. but i also have equally as much hope and excitement in and commitment to the discovery for us and our children.

i am another on the wait list, have been in PM communication with you and spoken with holly. just waiting on you, as you gather more tools and experience and passion for the task at hand. thank you for your leadership and your partnership. aliyah (ilene)

Dr. S, I have a question at the confluence of neurology and vascular medicine. How does a stenosis at the jugular level, sometimes well down the vein, cause a focal lesions deep in the brain? Reflux could break down the blood brain barrier, but that would release cells into the CSF in general, but how would the venocentric plaque form way down the vascular line?

I started a new thread on this, but would love to hear your answer. My neurologist, who is very open and sympathetic to CCSVI, asked me this and I did not have a good answer.

Was it unusual then for the clots to form the way they did and the thrombectomy catheter to be needed? Why would a hypoplastic vein have more clotting that quickly, if indeed this is unusual? I can see it being more likely to have intimal hyperplasia over the coming months, if it incurred more damage from stretching than a larger vein would and because the whole length of the vein needed so much work, or more elastic recoil if it was a tight small vein to begin with and that upper waisting never broke, but I don't understand the immediate clotting.
I am curious (and hopeful) too!

Me, too!!

Thanks as always Dr. and JackT. One day it will be interesting to hear how and why Jack and Sal met.
Dr. it is good you are adding balance 'and' knowledge here.
Your comment regarding treat or not to treat because of the surgery challenge is good. We forget that angio is the reason that vascular flows became the hot topic.
The key thing for us all to remember is that 'in my view' there is more to be understood about vascular involvement in diseases such as MS.
The process of neuro-degenerative damage is a work in process and there is much more to be understood than CCSVI as an entity, many veins and so little time.
Let the safe options be tried first and see what happens.
The balloon sizes and pressures and the new eye should be good reading!
How many sleeps now Dr?
Regards Nigel

this is all theory mind you.

outflow obstruction leads to attempts of the circulation to find ways to get the venous blood out of the brain. That leads to reflux into small collateral veins that can bypass the obstructions. we call this venous insufficiency. the flow of blood out of the brain is nearly constant and of great volume. thus large amounts of blood, finding circuitous pathways deep in the brain, cause stretch of the deep cerebral veins that were not meant to carry such high volume. That stretch leads to gaps in between the cells lining the blood vessels and this leads to leakage of blood cells beyond the blood brain barrier.

Dr. Sclafani,

I'm a "civilian", but I have lots of questions about what information is being captured at the central data bank that so many have alluded to.

Is there any info being collected as to blood chemistry or other data that would help identify potential future clotting situations? It seems so far that most comments have centered around the physical structure of the veins, valves, etc. Would data on blood type, etc., help identify who requires what type of aftercare?

Also, does this data bank seek to capture data that will help predict the relationship between location/type of blockage and the patient's symptom(s)?

And is this project underway yet? If so, where is it located? Is there a way pwMS can support it directly, either with data or with funding?

Lol, JackT, that brought me a smile.

Dr. Sclafani
As I understand the venogram process, dye is injected into the blood stream and x rays are taken continuously to show the path of the dye. Is there any danger of over exposure to x-rays as a result?

David, try this post:
http://www.thisisms.com/ftopicp-113211.html#113211

It is the location that is intriguing. I guess the plaques are rather randomly scattered whatever the cause, so the fact that stenoses well outside the brain case cause leakage and ultimately plaques deep inside the brain case makes as much sense as anything. After all, if the cause were systemic autoimmunity, the location of the plaques wouldn't relate to that either. Perhaps where the vessel walls are thinner, the slow blood transit is more likely to cause leakag than near the stenoses, where the veins have a more substantial wall.

Thanks Cece