I just want to clarify that I am reporting on my experience only. I am not a diehard proponent of CCSVI trying to talk it up in the most optimistic way possible. I still remain skeptical. But since it is my story I didn't feel the need to mention that a stent came lose and migrated to one of Dr. Dake's patient's heart and caused serious long lasting damage and could have killed him (this stent was placed very high up) or the fact that someone else had an arterial bleed after the surgery which could not be stopped since she was on blood thinners. This ultimately led to her death. It was determined by Dr. Dake and her treating doctors that the CCSVI procedure itself did not cause her death (CCSVI focuses on veins not arteries) but certainly being on blood thinners compounded the problem and possibly contributed to this tragic event. So one must always keep in mind there are serious risks of taking blood thinners. Obviously all surgery comes with some risks too. This is why I offered links to the forums in my posts so people could read more carefully for themselves about the risks and possible benefits.

I should reiterate that I have occlusion in both the lower jugular veins. Perhaps this is why the neuroradiologist I spoke with (at a top 10 medical school) thought it might be "easy to fix." It isn't high up in a tight space. All I can report is what I heard from this one doctor. Again he did not seem apprehensive about stents in veins in general. I took his word for it since he puts stents in veins and arteries inside the brain on a regular basis. I was surprised given the "warnings" I had heard elsewhere.

Anyhow, if you want more details about the nuance of the arguments, the dangers involved, the specific experience of patients who had the surgery done etc. please go to the links I mentioned in my very first post.

http://www.thisisms.com/forum-40.html
http://www.facebook.com/pages/CCSVI-...s/110796282297

Everyone needs to make their own treatment decisions for themselves after researching and consulting with their doctors. I have a higher tolerance for risk than others I think. This is why I went on Tysabri even with very mild MS symptoms. This is why I am seriously considering getting my jugular stenosis treated. My quality of life NOW is more important to me then living a longer life in a progressively worsening situation. I have no limitations from MS right now and would like to keep it that way. But others should be respected for their choice not to take bigger or more unknown risks.

There should be more trials within the next year or so. If the consensus is that such surgery will help those of us with the more progressive forms of the disease, I will get on the list for the surgery if I have the blockages.

To me, this seems to be the only game in town that has the potential of making us better. I look forward to more teams researching this procedure and reporting successes which hold promise for the rest of us.

gmi

When I was undergoing such high level chemo, I had several central vein IVs that used the jugular vein. I wonder if those caused scar tissue? I am still waiting for more info to be known. I wish I had more bravery when it comes to being first in line asking to be tested.

Ima chicken!

IMO,
Since there are four Jugular veins, two external and two internal, and the Azygos vein in the chest, they all need to be tested for blockage or inverted valves that can cause a back-flow back into the brain, and little back to the heart slowly.

The Carotid arteries bring blood up to the brain and are strong vessels (not not veins) to take the full force of your blood pressure and pump of the heart.

The veins are thin and smaller that drain the blood back down to the heart. I totally believe CCSVI will be our answer. Maybe we are born with it, or maybe something happens to cause this, it seems the more veins blocked, or if a few are badly blocked, the more progressive the MS.

Since it is now considered a "Vascular Disease" (CCSVI) by doctors and labeled as such, the procedure should be easier to test and treat once everyone gets trained and is the same page with knowledge.

It is not considered a MS treatment, because anyone who has a blockage or inverted valves, should have the blockage repaired. It is not healthy or normal to have this. It could cause other diseases and problems just by being blocked.

Sorry I missed this thread...
Natalie, you gave us lots of info regarding this very new theory...thanks for sharing...
Judy, I have the same type of pressure when I get up from sitting...my vision grows darker, my hearing gets muffled, and then I feel as if I have a helmet on that's too tight for my head. Then I hear a whooshing sound, like a large fan, and it dissipates. I told my girlfriend about it and she said her mom has the same thing...that she was diagnosed with polymyalgia, and that this is called giant cell arteritis...I haven't ever had a doc look into it for me...

Marc, your statements about stents traveling to the heart is my main concern about stenting the jugulars...the valves would easily allow the stent to travel down towards the heart, esp with the diameter of the veins enlarging as it nears the heart. This is my chief fear.

Again, Natalie, thanks for such an informative thread...

Well, it's official. I am getting balloon angioplasty this Friday to unblock my jugular veins. They won't be using stents (going conservative at first). I found a doctor to do it so it will not be part of Dr. Dake's proposed clinical trial at Stanford. It will be outpatient surgery although I will be there all day. I am looking forward to seeing if I feel any differently. Mostly I am viewing this as an extra insurance policy to go along with my drugs. I'm not sure I'm convinced this is THE answer or sole cause but I do think it is part of the problem of what we call MS. It could be that CCSVI is a congenital structural problem that doesn't always lead to MS on its own unless you throw some other goodies into the bag--such as Vitamin D deficiency, Epstein Barr or other viral infection, smoking, and/or growing up in the wrong latitude (which I'm convinced is D vitamin related). Anyhow I would like to get the plumbing fixed so my brain is in a healthy state when it comes to blood flow.

Cool, Natalie. I hope it makes a positive difference for you.

Good luck, and keep us posted!

Natalie thank you so much! Hope is all we ask for any hope.....After having all hope ruined so many times.....you rock!

Good luck natalie! Did you have any problems getting insurance approval for this?

Natalie, you are one brave soul! (((( HUG )))) You are in my prayers.

Last year I had an angeogram, so I had the opportunity to see the blood vessels in my chest as they did their job. One of the things that sort of surprised me was just how much these vessels jump, twist, and bop around with every beat of the heart.

I know that all blood vessels don’t do that, but in the high-pressure areas, such as in the chest, neck and head, I’ll bet there’s a whole lot of flexing going on. So I can see how a stent could easily add to the ware and tare of the vein tissues.

Also, did anybody notice the Venograms sometimes showed what looked like extended sections of the vein that looked partially flattened and having an almost twisted look to them? How long a stent would be needed to keep something like that open?

Perhaps they will consider taking a vein from, say, your side and using it to replace the flattened sections. Anywayz, I’m just spit-balling here. I don’t want to be the first on my block to have a procedure, but I don’t want to be last in line, either.