This Is MS Multiple Sclerosis Knowledge & Support Community

carollevin wrote:What are sticky's? I see that word here on the main page and don't know what it means?

Do you have any ideas on where we could set up a site like you suggested. I know I can start a FB group, but I don't think the ability to separate it out by doctor's name is possible, within one FB group?

Any ideas?

Sticky's are topics that stay at the top of the board, no matter their age or how recently they have had activity. Other topics that are not sticky will scroll to a different position further down in the list as the individual discussion within the topic dies down. Only the moderators can decide if a topic will be sticky.

For the site I suggested, it might be possible to add it as another page to an existing web site....CCSVI Alliance came to mind, but then I saw this:

http://www.ccsvi.org/index.php/helping- ... -providers

which would have just sent you back here and makes some valid points about what we are discussing.

Codefellow,
Thanks for the info on sticky's.

And moreover, I see what you mean now about the issue of why there is a downside of a site that rates the IRs, if some want to go under the radar and such....I guess the best way for patients is just to look for testimonials and also to decide on what technique one wants (for example, IVUS or no IVUS, valves or just veins, burst/pop or not, size ballons) and then find the IRs who are doing it that way and do a consult and see if it feels like a good match. This is the process I have been in for a while, which makes it even harder that I am still not sure I am ready for CCSVI at all until it is perhaps improved and standardized a bit more as to a decision about what are the best procedures/techniques. But on the other side of the fence, I know I am racing with a potential clock of going downhill without it as well.

Happy Poet,

Thank you for the detailed response on Dr. Sclafani. I don't know him personally but from his writings and videos and what others have told me, I can see he is incredibly knowledgeable and even genius and always thinking about how to make this procedure better--all of which impress me.

I personally still have not made any decisions on which IR to use because of the controversial issues such as whether IVUS is optimal, what balloon size to use, and most important to me, whether the valves should be disrupted or not....This last point seems the most controversial to me, as some say it cuts the rate of restenosis down to 10% while others say it is extremely dangerous and actually increases restenosis and thrombosis. For every one who says one opinion, I find another person with the opposite opinion on this issue of tearing/popping/disrupting/treating the valves and to what extent to work on the valves.

That is why I am personally stuck at the moment as to which IR to go to, or if I should wait until I feel more certain or if the field has more consensus.

I think, as I have written before, that perhaps I am looking for a "guarantee" that simply does not exist at this time.

In the meantime, I would certainly love to hear more opinions on the various IRs and the results patients have had and whether they would recommend a particular IR.

Who are the best CCSVI docs doing the procedure in the U.S.?

Hands down the best Doc to treat me - ever, for anything - was Doctor Sclafani.

Johnson wrote:

Who are the best CCSVI docs doing the procedure in the U.S.?

Hands down the best Doc to treat me - ever, for anything - was Doctor Sclafani.

Agreed. His thirst for knowledge, hunger for self-improvement, and empathy set him apart from every doctor I've ever gone to.