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.
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!!