This Is MS Multiple Sclerosis Community: Knowledge & Support

Those MRVs are a static image taken after the gadolinium has percolated through the area. if you take a snapshot you might see what you expect, but there is slow flow rather than no flow.

good question about the vertebral vein flow. I see that you will make me think by this exercise and i will figure things out or need to learn things along the way......we really are partners in crime, eh.

I would postulate and argue that these vertebral veins have extra flow that they are not prepared to handle. and not all the blood can exit as fast as necessary. the theory is that this "breakdown" in the blood brain barrier leads to problems.

you guys are tough and insatiable

Hello Dr. Sclafani,
I am the one that asked if you were associated with Dr. Mahta. The reason for this question is that when you first posted, on the other thread, it was a thread about Dr. Mahta. I appreciate you clearing this up, and for all the explanations and time you are devoting to us here. It is truly appreciated!
Lavonna

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Together, our voices are louder!
http://ccsvivictory.club.officelive.com/default.aspx

Ha! I would describe us as "driven", no longer accepting a "party line" but requiring much more to satisfy our information needs in order for us to make informed decisions.

Many thanks from me as well for your willingness to educate us so that we can, indeed, make informed decisions.

And a doc with a sense of humour! We like that too! I am very glad that you are a part of our journey into this very exciting future unfolding before us!

Interesting!! I never made this full connection, that it's not just a matter of backflow, but of reduced inflow...and exercise or fight/flight response or anything that would drive more blood flow in would still meet up with the CCSVI condition on the way out.

Just for a blockage in the neck to cause toes to be cold at the opposite end of the body...it drives home the notion that the vascular system is one big loop.

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"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition

Hello Dr Sclafani. You can't imagine how much I appreciate you entertaining questions from this forum.

I have an appt scheduled for you in May (but am rebooking for July/Aug for some personal reasons). My question for you is this:
I have a portacath (Power Port) that was implanted for chemotherapy as an MS treatment. It sits below my left clavicle, enters my left subclavian and stops in my superior vena cava, 5 mm above my right atrium. Does this eliminate me as a candidate for a venogram or just make me more challenging?

To add insult to injury, the surgeon had the guide wire go up my external jugular during the surgery, there was some trauma, a clot, and now my left external jugular is completely occluded. I am an x-ray tech and was aware of this risk. I never thought to complain about my painful neck so I take partial blame. Stuff happens.

The radiologist reading the doppler assured me that the occlusion is scarred and very old. My left external jugular is collapsing distal to the obstruction. This port surgery was October 2008.

Before I come out to see you, I guess I should find out the answer to this question.

Another thought discussed here has been that some of the damage of m.s. is occurring during sleep. If the jugulars are only open during sleep/lying supine, then this is when a blockage would be causing problems. As an expert, do you give any credence to the notion of inclining one's bed to improve circulation and drainage from the brain while sleeping? (I am currently sleeping on a bed with 6 inch wood blocks raising the top end, so that my husband and I are sleeping at a bit of an angle. I started out thinking it was goofy but I'd give it a try; I've found that I'm dreaming again and waking more refreshed.)

Without asking you to comment on details or provide care, do you see this as fitting in with CCSVI theory? If inclined bed helps, might it indicate that there could be a problem with the jugular veins, since those are the ones that should be able to carry the load during sleep?

(edited: because I had it reversed and was talking about the vertebral veins carrying the load during sleep, when it's really the jugular veins...)

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"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition

My close friend has a port and she required a venogram (for another reason) which made it easier as they just went directly through the port instead of threading it up through the leg.

Dear Dr,

venogram is the gold standard for diagnosing CCSVI in IJVs and azygos you say and of course it makes sense.
What about vertebral plexous problems? Atresia, agenesis or whatever.
Would you suggest a specific test (like ct scan or MRV) just to make sure especially when venogram is not indicative for CCSVI?

I know it s early days, but given the fact that blood drains from the vertebral vains when in upright position isn't imaging of these veins also, of special importance?

Please, forgive me if this is already answered and just ignore it. I ll take my time to go through your thread a bit later.

Your presence here is a great honor.

Dr. Sclafani
THANK YOU for coming on board. It has been impossible to obtain any
information regarding ccsvi in Greece . Your valuable knowledge is much appreciated by everyone on thisisms Holly has been great trying to
help me. Looking forward to meeting you soon I am positive that once
again you will get the last laugh together with all the doctor's accepting
Dr. Zamboni's theory

Miranda

I had one of those things that looked like a valve but was just a roadblock. I have a stent sticking right in the middle of that valve and it flows now. Before it was a complete stop. That is why I did the two trips to see Dr. Dake. He wanted to put one in that valve the first time, but was unsure. The second time that's what he did and it was dramatic in terms of flow on that side.

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http://myhopefuljourneyintoactualmsreco ... ogspot.com

Thanks for the reply.

I asked the same question on sunday to a certain well known investigator. awaiting an answer

these vertebral veins are pretty small. I wonder whether they would stay open after angioplasty

Thank you so much for answering our questions, Doctor Sclafani!
My question also relates to low blood pressure. I enjoyed marvellous symptom relief from 2 stents into the high jugulars for 3 months until I became pregnant. Since pregnancy all of my MS symptoms have deteriorated and now quite significantly. I am 24 weeks pregnant and my most recent blood pressure reading was 70 over 40.
Do you think that low blood pressure would reduce mean transit time of blood through the brain and increase hypoperfusion?

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3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,

Perhaps the port could be used to access my right internal jugular, but if a wire was put in my port, it would exit the catheter into my right atrium and it would have to turn right back and trace along the catheter in my left subclavian to reach the base of my left internal jugular.

I want a radiologist to say "No problem." I suspect it is though.

I could have the port removed because I am done chemotherapy, but that's another surgery. Oh, the choices.

........