I wanted to fill the forum in on my experience with CCSVI (chronic cerebrospinal venous insufficiency) which people have been talking quite a lot about, especially in the past few weeks. If you need further information about what this is and its connection to MS, I would recommend you go to
http://www.thisisms.com/forum-40.html
http://www.facebook.com/pages/CCSVI-...s/110796282297

You can find contact information and more details about the theory which began with Dr. Zamboni in Italy. In a nutshell, he has argued that stenosis (blockage) in the jugular and azygous veins corresponds with the disease multiple sclerosis. He has not seen this in the control group which included people with other neurological diseases or no disease. He has argued that treating with balloon angioplasty has relieved symptoms and stopped progression. Dr. Michael Dake at Stanford has seen about 160 people and opened up their veins using stents. He is about to start a clinical trial in Jan./Feb. Prior to the trial he was taking anyone who was interested so I contacted him way back in August. I just got back from a consult and initial scheduled surgery. I thought I would share what I found out.

I saw the head of radiology/cardiology Dr. Michael Dake at Stanford University yesterday. I was tested for CCSVI. Two days before I left I got a call saying he had suspended all procedures but I could come anyhow and get tested and consult. That is just as well because I wasn't sure I was ready to jump in and have the stent or angioplasty surgery this time around. Apparently the neurologists at Stanford are flipping out and are not supportive of this one bit. The politics have gotten nasty and Dake has had to stop the surgeries until his clinical trial begins. It is wise for him to start doing this with a clear protocol in a clinical format. This will begin in Jan./Feb. and I can participate in that if I like. It will last 6 months. Half the group gets the surgery and half does not. At the end, those who did not have the option to have the surgery can get it if they want to. It is designed as a "vascular study" to fix venous stenosis, not an MS study, hence it only lasts for a short time and you can still stay on your MS drugs if you want.

Dr. Dake was amazing and an impressive doctor. He loves to yap (which is a good thing) He was chatting up a storm about the BBB, creeping T-cells/B-cells, neurologists in general, reading radiology reports, looking at MRI's, on and on and on. It was like an onslaught of encyclopedia information. I really liked him. And trust me, I've seen LOTS of doctors all over the place, including the Mayo Clinic, and I thought he was one of the best. He seemed so excited about this research and the clinical trial he was about to begin.

The whole thing, however, was extremely overwhelming. I got an MRV/MRI test (the MRV looks at contrast going through your veins). He sat and talked to me and my husband for almost 2 hours. Both my lower jugular veins are occluded by about 90-95%. They are essentially pancaked flat. If you look at them layer by layer in flair cut pictures (slices) by the time you get to the bottom they virtually disappear on the screen. The upper left jugular (very high up) is also somewhat occluded. And there is some other vein high up on the left that looks not quite normal either (I can't remember what it is...near my sinus??). Dr. Dake was surprised I didn't have more fatigue than I do or even more problems. He kept saying, kind of half jokingly "this is not normal, this is not normal," as he pointed to my jugular veins. One of my jugular veins is not even completely round, but in a triangle shape (like it is crimped)--although he said at least some blood was going through that part. I told him I think I am not having more disability etc. because of the Tysabri.

He also said I have extremely low blood pressure. My average is 98/58. So the blood is already not flowing well through my body and then with the occlusions I've got double the problems. What happens when the jugular veins are occluded is that collateral veins develop to pick up the slack and reroute the blood. He pointed these out to me on the scan that offers a straight shot view of the whole head and neck, and there were so many of them (they really shouldn't be visible at all). They lit up like wide hanging strands of spaghetti near the lower jugulars. It was so bizarre to see this but this told him that I had developed this whole other collateral vein system to get the blood out of my brain that was working overtime because the jugulars were blocked or essentially pancaked flat as he called it.

One thing that was interesting is Dake thinks my jugular stenosis is contributing to a problem I have had for years but has gotten worse with my MS diagnosis 2 1/2 years ago. When I wake up in the morning I feel like crap. I'm slow, brain dead, sluggish...it takes me 3-4 hours to really get going, especially mentally. I have mud for a brain until I "wake up" as I call it -- however, if I get up at 9:30 my brain really isn't firing on all cylinders until 1 or 2 pm. I start to feel better and better as the day goes on. He thinks that lying all night in a supine position with jugulars that don't work has left my brain in a bad state and when I'm finally standing it has to catch up and clean out. When you are standing upright, the jugulars have gravity to help bring the blood back to the heart. When you are lying down and they are blocked you have more difficulties.

The trial starts in Jan. or Feb. I'm thinking I may join it, especially after seeing my scan. He said mine was quite blocked compared to some others. The woman who saw him the day before me was missing her left jugular vein among other things!!

I don't know what to think. It's almost like getting re-diagnosed again, looking at the scans of my screwy veins. Dake will be publishing an article soon in a prestigious journal about the first 160 people he did the surgery on. Neurologists at Jacobs Institute in Buffalo are testing 1700 people for venous stenosis (but not treating). They have tested the first 500 people and will release their results about this in February. Another doctor (yet to be announced) will be starting a trial like Dake's on the East Coast.

This may be revolutionary. Even if it is not directly related to MS per se (in the sense of causality) it's hard not to think that jugulars that don't drain can't be good for my body or my brain. So I may want to get the pipes fixed!

Anyhow, I'll let you know if I go into the study and keep the forum posted. Sorry this is so long!!!

Just to reiterate -- if you want to know more or get contact information go to
http://www.thisisms.com/forum-40.html
I won't be on NT every day checking in. Good luck!

All I can say is WOW Natalie.

It sounds like it's a good thing you got tested and that you know that you have this condition! I can't tell you all the thoughts that went through my head when I read this, how this condition may relate to MS and so many other problems people have!

Let us know when you find out who the East Coast doc is. I for one will be interested since there's virtually no chance I will be going to Buffalo or Stanford. I'm hoping someone from Boston or thereabouts will be picking up on this and it will give those of us over here a chance to get tested.

You're our pioneer now for this condition and the procedure that you choose to follow. We'll be watching and cheering you on in whatever you decide to do!

We won't make any "spaghetti head" jokes just yet!

I've applied for the scans they are doing in Buffalo. It sounds like there are a lot of applicants so I'm not sure if I will get asked to participate.

Nothing invasive, just the exams to see if you have blockage. The only thing I'm not cool with is that they aren't going to allow you or your Doc access to the results.

The only thing that worries me about Dr. Dakes theory of placing stents, is that stents are made for arteries, not viens, which are thinner and more fragile. The possibility of a stent traveling to the brain scares me.

Dr. Zamboni's angioplasty may be a safer route. Maybe this is why the University is not standing behind Dr. Dakes procedure, at this time.

Anyway, you are very brave to consider becoming part of this trial and I applaud you..

This step takes it to a whole other level. At this point I'll do the diagnostics but I'm too chicken and doing to well to consider the invasive part just yet. I really do think it sounds promising though. No magic bullet of course but maybe something to help stall progression for some of us.

I think I'd be more likely to go the medication route (blood thinners) than the surgical route...at least until more research has been done on the surgical part. I'd like to see a few thousand surgeries done with an excellent success rate before I'd let them start sticking things into my veins in the neck.

I haven't decided if I will join the clinical trial and get stents. I may try to find someone in my home city (which has a big medical school) who would be willing to do angioplasty as it is far less risky. However, 50% of the jugular veins get blocked again by 9 months with angioplasty--they had to be redone. And then, we don't know how long they would continue to stay open.

Actually, someone has already contacted the Neuroradiology Dept. in the medical school in my city and the RN there said the following in an email: the dept. does "angioplasty and stenting procedures for different indications including venous stenosis. This seems to be the heart of what CCSVI treatment addresses. The procedure itself is pretty straightforward and low risk. "

In fact, stents have been put into veins in various situations when blockage to other organs have occured (Budd Chiari syndrome is one of many examples, when the big vein that leads to the liver becomes occluded and a whole series of collateral veins develop around it to try to move the blood). According to Dr. Dake stents are used in veins all the time but stents in veins are considered "off label" use just like medications get used off label all the time. Dr. Dake has found a stent company to make and provide the stents for his clinical study. Who knows, maybe he will patent a jugular stent. I think he already has 15 patents under his belt so far. Thus, I am not as concerned about stents in veins--it's not like this is completely and absolutely new.

But to get back to the risk...I have a few months to decide what to do. I'm not keen on having stents in my veins to be honest with you. I'm not sure how I feel about being one of the "first." I think if it was 50% blocked it would be a different story. However, it was shocking to see 90% blockage on both my lower jugulars and the huge collateral vein system that had developed around the blockages (yes RW, I have a spaghetti head!!). Some of the "pioneers" who have had the surgery said life changed so much it was like going from analog television to HD TV in terms of brain function, clarity, fatigue etc.

Here is a fantastic explanation of what we know so far and what needs to be tested further written by the Multiple Sclerosis Association of America.

http://msassociation.org/news_center...le.asp?a=ccsvi

I will let you know what I decide.

I'm speechless Natalie, excellent post, exactly what I wanted to read on here tonight.

The last part I quoted from your post, rings so true after reading all they explored with you.

I don't know.. if it were me, I'd want the pipes fixed, and not just something to thin my blood medication-wise, which may come with a host of side effects. Of course, safety is a concern as was mentioned. I think they'll find a way to balance that aspect and find a route to safely operate.

I'm not surprised to hear the doctors have their panties in a knot that their profits from drugs and such may go bye bye.

Yes, I want my pipes fixed also and stents I think are something we hope would not have to be replaced.

FWIW None of the Doctors I know make a penny off the medications. In fact the reps rarely even offer any of the great perks of the past so we aren't even being fed or taken on vacations any more. I think its more about egos.

If not the medications, think about the other costs. Filling out paperwork, appointments, continuous testing (MRI, etc)...

Sadly you hit the nail on the head with the comment about egos. One of my best friends is in medicine here as a practicing doctor, and that's how he described it, egos. Mind you, he did say some with huge egos or attitudes are also some of the most intelligent people you'll ever meet. So I guess in some cases, it's toss the bedside manner out the window for knowledge? I don't know, I'm sure not a doc!