This Is MS Multiple Sclerosis Knowledge & Support Community

http://ivradiolist.blogspot.com

alright, im supposed to be working right now, but the last two or three weeks, ive been more than stretched thin trying to dig up information and waiting for these study results as well as stanfords announcements as to when their trial starts. i started this blog to further help those of us trying to work on a local level to get the word spread about ccsvi. please go to the site and check out the "read first" then submit the doctors information to help those of us who cant sift thru pages and pages of message board threads or who are simply wondering who to call... i only made the blog to help where i can from my position. i will up date it nightly as information comes in. please submit where you can for the others in your local area. "all for one for all" lee.

This website is probably already known by others here at TIMS but The Society of Interventional Radiology Doctor Finder looks like a good place to begin a local search:

http://members.sirweb.org/index.cfm

perfect and even better than i could make myself! to me, that website seems like it would be made "sticky" as it is an intergral piece of information to get the word spread? and also make things a lot easier for us to find...thanks again buck!

Yes, but onesickrace,
isn't your post for posting ONLY those we find that are willing to explore CCSVI?
Great work, thanks

I will be writing to two of the IR physicians in my area tomorrow and sending them a condensed version of the booklet I have put together on CCSVI.

I work for local physicians, so hopefully with some name dropping I can get them to at least read my letter. We shall see. I live on the East Coast/Virginia Beach/Norfolk area.

I will keep you all informed on what reaction I get.

Jill

Hi Tims,

I have been looking into getting a Doppler or Ultrasound done here in CA before I leave the area, but I've run out of time. We are leaving next week. Anyway, I thought I'd share a response from one of the radiologist I spoke with. Also wanted to say the IR website link posted by onesickrace was of great help to me in locating the right folks in this area.

"No problem.... Funny thing, I belong to an online list serve for vascular types, and this topic has been coming up in the last few days. (sometimes I don't get around to reading it for awhile)

You can check the archives from the link below, but here is one posting about it. Seems like there are lots of folks doing the same research you are. Trust me, if there is a demand, and a billable code, we will all be doing it soon!

Thanks for the info!"

"Well put. I can’t argue with the fact that this research is in the investigational phase, and intracranial hemodynamics are an important aspect of this research. However, unless your lab is trying to validate these findings, there is still no reason to scan intracranial veins for reflux (and as you point out, it’s not billable anyway). I do believe the true issue at hand here is a clinical one. Patients, and their families, are checking out the MS website and findings specific reference to Zamboni’s research and the possibility of improving their symptoms. So they talk to their doctors, who may send them to the vascular lab for a venous evaluation.

So, what’s the lab to do? I suppose your technically director could convince the referring doc, that this is an unnecessary test, in it’s investigational phase, or that you lab doesn’t do it, etc…but more than likely you’re not going to turn all of these patient’s away. Venous insufficiency unspecified (459.81) is a billable indication for a venous exam (sure I use this mostly for varicose vein studies). Head and neck swelling would definitely be a legitimate reason to scan these folks.

The average vascular lab and average vascular tech, could easily evaluate for proximal internal jugular vein stenosis. I doubt they could perform the intracranial venous exam (or would want to in the manner proposed by Zamboni). All I’m saying, to those on Flownet wondering how to do this testing, is, if your lab is getting an influx in requests for this evaluation in MS patients, I think you should scan the major extracranial veins, and pay close attention to the proximal IJV. If the scan is normal, you saved the patient the time, money and inherent risk of a venogram. If it’s abnormal, it’s the doctor’s decision to intervene, if they think it would help."

Here's the link, you'll find the CCSVI references down the page aways. If nothing else, this is interesting info: "Venous insufficiency unspecified (459.81) is a billable indication for a venous exam."

http://list.uvm.edu/cgi-bin/wa?A1=ind1001&L=UVMFLOWNET

Lora

INTERVENTIONAL RADIOLOGISTS IN CANADA:

http://www.ciraweb.org/en/patients.html

Thanks Pointsnorth,

That will be helpful too! Isn't this getting exciting? The ball is really rolling now.

Lora