This Is MS Multiple Sclerosis Community: Knowledge & Support

kc - I'm sorry to hear your appt. was canceled. Hopefully it can be rescheduled?


I don't post here much, but have been reading this CCSVI forum daily since late October. I seem to be just a bit late in getting on board for treatment - just a bit late for Dr. Dake's study... just a bit late in emailing Dr. Simka.

I've finally 'heard' and taken to to heart the 'act locally' advice, and started a targeted letter writing campaign to Interventional Radiologists and Interventional Neuroradiologists in my area.

I sent my first batch of letters on Monday, and have sent out a handful each day. I'm pleased to report that I've already had an email response from an IR who is 'interested' and he has also talked to the Neurology department at his hospital and they would like to work together to learn more about CCSVI and possibly do the testing for me. Wow! It works.

Cece,
That's great you are putting the effort in, it will pay off.
A couple of words of advice;
- don't expect any encouragement from your neuro, unless you get really lucky.
- that IR sounds like a jerk for having such a closed mind, don't be discouraged there.
- don't emphasis the MS aspect too much, go with the CCSVI is effecting my brain, I want my veins checked. it's probably causing headaches.

I sent you a Pm too.

-

More good news -- I saw the interventional radiologist today at the same medical school where I saw the neuroradiologist 2 weeks ago. He is chief of the department. It turns out he is best buddies with Dr. Dake--they have known each other since the 1980s because they did their residency together at the same medical school and overlapped by 2 years. He actually called Dake this morning before I showed up! Wow, what a small world. He also called the head of the MS clinic at the medical school where I'm treated to see what he thought as well. The head of the MS clinic has a pretty open mind.

This IR is quite excited about the paradigm of CCSVI. He said there is no proof per se that CCSVI causes MS but he believes in the correlation and thought Zamboni's knowledge of anatomy and the way the vascular system functions was top level. He said we would have to do wider and larger trials over a longer period of time to see what the actual results on MS would be. But, this doesn't mean he isn't willing to treat someone. And honestly, he was really excited about all the Zamboni material he had read. He is meeting with the neurologists in 2 weeks to discuss a collaboration and possibly creating a clinical trial to put Zamboni's work to the test. He described his talks with the MS director already as nonconfrontational. He said it is not like at Stanford. He expects easy collaboration between the neurologists and the interventional radiologists at my medical school.

Just a side note -- this IR said Dake told him that Dake had a paper on the pioneers accepted for print in a pretty solid medical journal. Dake mentioned this to me as well. Apparently the Stanford neurologists flipped out and approached the journal asking if they could write an editorial response to Dake's article. Because of the big fuss and confrontation the medical journal decided NOT to print the article. If you know anything about academia, you know it's a big deal for a journal to pull the plug after accepting something.

The IR said he would definitely treat me. He and the nurse were overly excited to meet me and talk about my scans (which they had viewed before I arrived). He said there was clear and significant stenosis in both my lower jugular veins. In fact, they were flattened and he said he has seen this issue in other veins before. So now this is the 3rd doctor that has seen my blockage. Maybe I just have a really obvious problem?? He was ready to put me in the schedule right away. It's about a 2 week waiting time once you are set up. He said is really looking forward to doing a venogram on me and exploring the azygous, the jugulars, and some of the other veins Zamboni looked at. He said he couldn't get a good view of my azygous vein on the MRV and wants to take a closer look. Oh, I forgot to mention that he wants to try angioplasty only on the first go if he can. He would rather start conservatively and come back again if necessary for stents.

So, it looks like I will be getting treated. I just need to get things in order and figure when I can squeeze this in around my job. The neuroradiologist asked my IR if he could scrub up and come watch the procedure on me. The IR wants to do this in consultation with my neurologist. So there will be collaboration now between 3 departments. Also, it was cool and reassuring to know that the IR has been friends with Dr. Dake for years and years. I know he will be directly consulting with the main man!

In conclusion, my advice to everyone is to contact those vascular surgeons and interventional radiologists. They seem much more open to the concept. Like the neuroradiologist he was confident about the relative safety of the procedure (esp. with angioplasty only) and clearly these are procedures he does all the time. I get the sense these guys could do it in their sleep. Overall, now that I've seen many neurologists (I've gone to 5 in 2.5 years, including the Mayo Clinic in MN) and now these 3 radiology guys (including Dake), I can say that I find the latter group to be much more pleasant to deal with!