This Is MS Multiple Sclerosis Community: Knowledge & Support

I was tested by Dr. Dake at Stanford and showed 90-95% stenosis in both lower jugular veins and some stenosis in the upper left jugular. Unfortunately I happened to be one of those people whose surgery got canceled 4 days before I was to arrive. But I still went for the consult and testing and I am glad that I did! Dr. Dake said I could participate in the clinical trial if I want. However, I did some poking around in my own city for alternatives (it's always good to have the most choices possible).

Here is what happened as a result of having a MRV test in hand: I live in a big city with a prominent medical school. I contacted the interventional radiology department and explained my situation and sent some of Zamboni's articles. He responded in less than a day! He said that he had not been following CCSVI but read through Zamboni's articles and would be "delighted" to meet with me and review my MRV. He remarked that CCSVI was new to him but that diagnosis/treatement of venous stenosis and occlusion was quite common in his practice. I now have an appointment with him in 4 weeks.

I also contacted the Neuroradiology Dept. at the same medical school. I managed to book an appointment with a doctor in neuroradiology to look at my scans as well. This dept. even explicitly stated that we could talk about possible treatment. My appointment is in 3 weeks. The nurse in his dept. said that neuroradiology also treated venous occlusion. She did say that even using stents/angioplasty in arteries in the head was an evolving field (and somewhat new) but that they had treated both arteries and veins in head/neck.

I will come back and let you know the results of these two meetings with the interventional radiologist and neuroradiologist! I may have the opportunity to be treated here at home instead of having to fly to California to be part of the clinical trial. I would also have easy access to follow up.

Two lessions to be learned from this: I think the key to being seen is to have the MRV test results already in hand. If you can find another doctor, such as your GP or even neurologist to order the test, then you are likely to get your foot in the door. More important, I also made it clear in my correspondence that we don't know yet that CCSVI causes MS, only that there is a correlation and it is still being tested (Buffalo being a key site). I stressed that regardless of my MS, it seems to me that significant stenosis should be fixed on its own right. Highlighting the stenosis (and not the MS so much) seems to be the ticket.

Good luck everyone -- keep pushing your docs for those MRV tests!

Good news, prof8 !!

GREAT WORK, prof 8!
Hope you get some answers. Only advice, you are correct not to post the name of the doctor or the university on the internet.
cheer

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

.

prof8--that is terrific news. I hope they find all sorts of problems Good luck and I can't wait to read the outcome.

Woo, Hoo Prof8!

This is great news --- for the newbies -- they now know it can be done.
Congratulations -- I can't wait for your next update.

Sharon

prof8,

Great lead! So exiting that you have found the interest in another hospital. Exciting for you to consider an intervention and exciting for us all in that there is another professional that sees the merit in the theory & is willing to pursue it. The more surgeons working at proving this, the faster it will become a reality for more of us. Way to go!
Deb

And there ya go! So happy you went ahead with the consult with Dr. Dake, you speak well to say that the MRV is half the battle, and what a great ice breaker with the Neurorad's and Interventionals.

Indeed, keep pushing for the MRV's, but be prepared to have some less than obvious results too!

Mark.

_________________
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap

Tomorrow I go see the neuroradiologist with my 4 CD's of MRV scans taken at Stanford. I'm a little nervous because I REALLY hope this guy can actually see the stenosis in my jugular veins. I'm thinking he probably will since Dr. Dake said it was 90% blocked on both sides. But still, I'm apprehensive. Anyhow, keep your fingers crossed. The nurse said this dept. at the medical school has done a lot of angioplasty and stent placement in veins and arteries. Maybe I will get liberated soon.

The appointment with the interventional radiologist got postponed until Feb. 2. They were extremely apologetic about it. They wanted my scans ahead of time to make copies and look at. All the people who work in the doctor's office seemed to be very happy to see me and get my scans when I dropped them off (3 of them were standing around at the front desk). I take this as a good sign.

I will come back tomorrow and report what the doc says.

Very exciting to watch you go thru the process here. How far do you think you'd have made it going there without the scans? My thinking is getting scanned is A. easier to obtain and B. most affordable for people who are forced to pay cash or credit, (read: those without insurance or are met with obstinate refusals from their HMO's) and C. affording one the ability to walk in to the radiologist, interventional or neurointerventional with some ammo and alongside the research papers and such, makes for a pretty good ice breaker.

Assuming of course the scan is done properly in the first place.


There's no easy answers here, and definitely not a "one size fits all" approach for every individual in pursuit of an answer. I'd rather leave all the options open and cover as many basis as possible. Some have even had their neuros order the scans, which is why I don't give medical advice, I present the info and let people explore using the options they have available at the time. I just don't understand why anyone would insist that there's only one way to go about this, as if it's one option and one option only. These doctors are anything but cookies cut from the same mold, and I'm a firm believer that the only DUMB question, is that which is not asked.

This is very exciting for you!!!!

Mark

_________________
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap

The neurologist here ordered the scans (FWIW) - He call that exploration. I think here they are allow to do that - Depending the Hospital rules I guess ??
It honestly cost much less that what is invoiced... But they need to have a return on investment for their material...

Congrats prof8. Having scans in hand make it all the more intriguing for the IR's.

Interventional radiology is growing and more and more procedures are being added to the roster. If they can expand their horizons, you create a win-win. You get the help you need and they get to treat another condition by a minimally invasive procedure.

prof8-
Holding you in a glowing circle of positivity!!

Prof8, thanks for sharing. keep us posted.

I'm not sure where to begin. It's been a long 14 hour day and I just recently got home. I'll tell you what I remember about my 90 minute meeting with the neuroradiologist and then come back again with more info if I forget anything--I'm going to share this with my husband so he can fill in any gaps (info that he remembers but I don't--there was a lot to take in).

Well, the WONDERFUL news is that the neuroradiologist that I saw today clearly saw the stenosis on my MRV--both from a view of the neck straight on and as we rolled through the axial cuts (slices of images cutting down vertically). The axial cuts showed the jugulars virtually disappearing on the screen meaning they got pancaked flat at some point (he said it was very obvious). This is exactly what Dr. Dake showed us. The NR said there is no doubt about it--there is stenosis in both my jugular veins. So Dr. Dake isn't the only one who can see it!! This guy was completely objective--he did not know much about CCSVI at all before I got there, admitted he doesn't even spend that much time looking at the neck or extracranial stuff (mostlyinside the brain itself) but he clearly saw the stenosis on the MRV. I asked him several times just to be sure and he kept saying, yes he saw it.

There were several cool things about this doctor--he actually walked into the room with xeroxed copies of many Zamboni articles already. He clearly had read them and put some thought into it. He could converse in the language of CCSVI and talked to me like I already knew a lot--it was more like a back and forth of me asking questions, him asking questions and us sorting through what we know and don't know about CCSVI. I also brought in several copies of articles and material for him to add to what he had. He downloaded the 4 discs I brought and there were thousands of images and different sequences--it took about 15-20 minutes to download everything to look at. He kept apologizing for keeping us waiting although we were talking with him the whole time. He was very open and not arrogant one bit.

Basically the doc. said that when it comes to the vascular system it is good to keep an open mind. He told us that doctors know a lot about the arterial system but not so much about the venous system. For some reason he said doctors just haven't paid as much attention to veins. I think this is why CCSVI is intriguing to him. He was completely forthright. Basically he told us that 1. he worked mostly with veins/arteries inside the brain and that he wasn't accustomed to looking at the lower neck or the azygous vein 2. but he still thought CCSVI was extremely interesting--enough for him to want to read more about it 3. he suggested that we might want to look for someone who is more familiar with the venous system outside of the brain/head like an interventional radiologist 4. but he also said that he thought this surgery would be pretty easy to do and he would be open to trying it 5. but then also told us it would be a learning process for him because he has never put stents in jugulars before and maybe he would like to collaborate with another doctor. I have an appointment with chief of interventional radiology in 10 days. The NR doc said he would contact the IR doc (they are both in the same medical school) to consult about CCSVI and me. Like I said, I am scheduled to see the IR in 10 days so when I get there the IR will have already spoken with the NR.

Essentially the NR was completely open to exploring CCSVI and possibly trying intervention but acknowledged that an interventional radiologist would have more experience with the venous system in the jugular/azygous area and really all over the body. The NR said he goes through the jugulars to get to the brain where he does his work but that he never really stops at the jugulars or the extracranial stuff because that isn't his focus.

He asked lots of questions about what symptom relief Dr. Dake saw, what protocol he used in terms of aftercare (coumadin v. heparin v. plavix etc.) He already knew about Zadinov at Buffalo and asked about that. He also asked about the trial Dake is going to begin and what I knew about it. He wanted Dr. Dake's email and phone # so he can also talk with Dake about this.

The NR was cautious but extremely curious and open to exploring this. He did say that based on what he has read there is an obvious strong correlation between CCSVI and MS. But the causality is still unclear--he stated that "it's kind of a chicken and egg question" and we don't have absolute proof that CCSVI causes MS. Regardless, he would be still be open to fixing something since he clearly saw it on the screen.

I should also tell you that the NR didn't seem all that worried about putting stents in veins. He said he has put stents in veins in the head before to treat something I think called pseudotumor cerebri syndrome. Here is a description that sounds a lot like what he talked about.
http://www.medscape.com/viewarticle/714384.
He said that a couple of years ago there was a big push to relieve intracranial hypertension by treating venous sinus blockage. Some doctors jumped on the bandwagon, others thought it really wasn't a real disease (symptoms are headache, visual disturbance, cognitive problems etc.) He has put stents in for this condition--the medical school where he is was really interested for a bit but now doesn't pursue treating this condition as much unless it is extremely obvious in the patient. The point of all this is that he didn't have much reservation about putting stents in veins. He said of course there is always the question of patency but the patency rates were 90-95%. There was way more detail but I don't want to bore you and this is getting long.

Essentially, the NR will spend more time looking at my MRV scans on his own. He did not recognize all of the sequences Dr. Dake ordered--but again he said it was because he is more accustomed to looking in the brain itself and not further down. He will talk to the interventional radiologist I am seeing to consult and talk about collaborating on fixing my problem. He suggested maybe going with angioplasty first to open things up -- then consider stents later. Although, he did say that sometimes you go in and the vein obviously won't stay open and you do have to put a stent in.

All and all it was extremely positive!!!! I found it reassuring that he wasn't alarmist about stents in veins, it was a familiar idea to him, and said "it sounds pretty easy to fix." I think this interested him because as he said doctors overall don't know as much about veins as they do about arteries.

I will come back and report what the IR has to say. The IR I am seeing has MANY years of experience, publishes a lot, and presents at conferences and as a guest lecturer and seems to be known in the field.

Wow, what a day. A lot happened. I need to go rest!!