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

Cece · Post by **Cece** » Tue May 03, 2011 9:19 pm

They did follow suit but did not have the same results (they had greater degrees of thrombosis-related restenosis). I agree so much about the need for this to get standardized. We've come so far since 2009 but still a long road ahead of us.

carollevin · Post by **carollevin** » Wed May 04, 2011 10:43 am

Thanks CeCe
I still have to wonder why other IRs had greater numbers of restenosis when "following suit" as compared to PI?.....Does PI have a special way of doing the valvoplasty and tear method that other IRs are not as good at or don't know about.....or are the numbers PI are reporting inaccurate? --they say only 10% restenosed in the past year. Could the PI docs be that much more skilled at these tweaked techniques?

carollevin · Post by **carollevin** » Thu May 05, 2011 5:23 pm

STill hope someone can explain my above question. Is PI really getting only a 10% restenosis rate at the 1 year mark?

Apple · Post by **Apple** » Sun May 22, 2011 10:11 pm

I would really like to know an answer to this question as well. Anyone can claim 10% restenosis...

It is hard to know who to trust as this is new and there is a great deal of money to be made. PI was rec. to me, but I also know they are getting a lot of referrals from one place.

The same goes with MRIs (a lot of money to be made here) and US. Which is better?

Perhaps we should compile a list of all the good CCSVI docs in various states.

Cece · Post by **Cece** » Sun May 22, 2011 10:29 pm

PI is not doing follow-up on the patients they treat...where could they be getting that number?

There is also a concern, when they say restenosis, what type of restenosis? Early on, Dr. Sclafani undertreated by using the same size balloons as Dr. Zamboni had used (10 mm). So, nearly all of his patients restenosed, but it was simple restenosis; they could all be retreated again. Complications like thrombosis and collapse and loss of jugular are also called "restenosis" but there is often no further treatment possible after that. So, apples and oranges, but both called restenosis.

k6ristin · Post by **k6ristin** » Mon May 23, 2011 3:33 am

it sounds simple but this is what "they" say: when you enter the vein, it's response is to naturally close up. there's even a medical term "intimal hyperplasia"
it just happens, not because of a doctor's skill level.

there aren't good numbers, data, etc; because noone's doing a 'real' study on this whole thing. so you maybe could wait, see if they develop better stents for veins, decide if this really works or what. I will say, from being in a "real" MS study for something else, a drug, backed by huge pharma, that even then, it seems to me the data is skewed...what is a flare up? etcetera are hard criteria to define. The say no new MRI lesions on the brain, and do no publish new lesions of the spine, for example, because the spine is not within the confines of the study.

if you do it, because you have choices in Florida, I again give my seasoned advice to stay local. because, god forbid, if you have complications, its not fair to go to a local doctor to clean up someone else's mess (from another state).
or better wording is the inevitable side effects of CCSVI....once you start opening veins, it starts a whole cascade of other venous changes, and the protocol changes, for blood thinners and other after care issues. so it's best to stick with the same doctor. unless he literally is bad, which the 2 doctors discussed here in Tampa, Florida, are not! (bad)

carollevin · Post by **carollevin** » Mon May 23, 2011 5:55 am

Thanks for the recent responses. If anyone is willing to name who they think are the best IRs for CCSVI and why, I wiould love to know, as well as if anyone is willing to name doctors or medical centers we should avoid.

I've been looking for an IR with the lowest restenosis rate, and lowest thrombosis rate, but from what I can tell just from reading testimonials and sending emails to the doctors, it seems the rates are fairly similar among the most well known IR doctors' names.

I don't know if this field will evolve to a level where there is a more standardized method that can better ensure no restenosis or other complications. I don't really understand why some patients do so much better than others. Is it the doctor's skill or the person's level of CCSVI?

Apple · Post by **Apple** » Mon May 23, 2011 10:01 pm

i guess what i am trying to say is you do not know what or who to trust. the studies, when they do come out, can and probably will be off so i would not trust them. like someone else pointed out, restenosis can take on different definitions depedning on the author. there is also a battle between the best screening process for this procedure. i know that some mri centers are gearing up for this. i am not sure i would like to see this strictly standardized bc of the politics.

not to change the subject, but in my research i am finding that some docs put their patients on a blood thinner post-op angioplasty for a month while others do not unless they are stented. i am wondering what your thoughts are on this and what is best?

HappyPoet · Post by **HappyPoet** » Mon May 23, 2011 11:32 pm

carollevin wrote:Thanks for the recent responses. If anyone is willing to name who they think are the best IRs for CCSVI and why, I would love to know, as well as if anyone is willing to name doctors or medical centers we should avoid.

I've been looking for an IR with the lowest restenosis rate, and lowest thrombosis rate, but from what I can tell just from reading testimonials and sending emails to the doctors, it seems the rates are fairly similar among the most well known IR doctors' names.

I don't know if this field will evolve to a level where there is a more standardized method that can better ensure no restenosis or other complications. I don't really understand why some patients do so much better than others. Is it the doctor's skill or the person's level of CCSVI?

I believe Dr. Sclafani is the best IR because...

1) He is the most skilled and experienced IR: Generally (30+ yrs including trauma experience) and in CCSVI specifically in that he has performed 150+ procedures using IVUS, and he collaborates with all AAC doctors around the country whose procedures number 450+, giving a total of 600+ procedures that he has guided and been responsible for.

2) He is the most adaptive IR:
A) He uses IVUS along with venography, a fantastic combination,
B) He works toward finding best practices and standardization,
C) He works to ensure his patients are not undertreated/overtreated,
D) His empathy for his patients is unsurpassed; he knows more about 'MS' than my own neurologist knows.

3) He is the most committed IR:
A) He maintains his thread, which we know is not always easy,
B) He runs the annual NYC CCSVI Symposium which is July 15-17 this year,
C) He attends symposiums and conferences around the world,
D) He is extremely active in ISNVD which he also helped conceive,
E) He postponed the good life of retirement so he could help pwCCSVI,
F) He took a cut in pay so he could help pwCCSVI.

I hope I've helped you see why I believe that Dr. Sclafani is the best IR.

Apple · Post by **Apple** » Tue May 24, 2011 12:10 pm

i agree. dr sclafani sounds good, but he will not look at an mri if it was done... it is not clear to me whether mri's or us are better. they look at different things.

codefellow · Post by **codefellow** » Wed May 25, 2011 4:42 am

Someone should start an angioplasty review site....one place where each provider who does the procedure is rated by his/her patients as far as various factors, such as restenosis, bedside manner, compassion, and yes, results. Only those who have had the procedure would be permitted to rate/comment.

carollevin · Post by **carollevin** » Wed May 25, 2011 7:34 am

CodeFellow,
I would love to see something like you mentioned--a site where patients can name their doctor, whether they had improvements and if so what, whether they had complicaitons, how long has it been since their treatment and did they restenose, did their doc use any special procedures and what type of testing was used, was IVUS used, do they recommend this doctor, etc.

I know how to start groups on FB, as I have one, but I don't know how to market it really so we would get a lot of responses.

carollevin · Post by **carollevin** » Wed May 25, 2011 9:48 am

Come to think oif it, there is already a page on this site with testimonials in a formatted manner, but it doesn't seem there are any or many testimonials for this year (2011) and also the testimonials are not in chronological order and are kind of hard to read through. I could try creating a new topic page here asking people to post their experiences with CCSVI with their particular docs, including dates, improvements or not, complications if any, restenosis if any and when, name of doc and whether they would recommend, or whatever the individual would like to say basically. Do you think people would be interested in something like that?

As a patient in the U.S. trying to choose a doctor it is otherwise hard to find very many testimonials on any one particular IR.

codefellow · Post by **codefellow** » Wed May 25, 2011 12:30 pm

carollevin wrote:Come to think oif it, there is already a page on this site with testimonials in a formatted manner, but it doesn't seem there are any or many testimonials for this year (2011) and also the testimonials are not in chronological order and are kind of hard to read through. I could try creating a new topic page here asking people to post their experiences with CCSVI with their particular docs, including dates, improvements or not, complications if any, restenosis if any and when, name of doc and whether they would recommend, or whatever the individual would like to say basically. Do you think people would be interested in something like that?

As a patient in the U.S. trying to choose a doctor it is otherwise hard to find very many testimonials on any one particular IR.

The reason I suggested another site instead of another topic page is, I think the moderators think we have too many "stickys" already. The way I see it, each IR would be their own topic on the review site with a 1 - 10 overall rating provided by the patients. Clicking on the IR name would expand into detailed ratings and testimonials.

carollevin · Post by **carollevin** » Wed May 25, 2011 4:16 pm

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?