This Is MS Multiple Sclerosis Community: Knowledge & Support

hopefully better durability

Yeah this is really moving fast. I remember when the decision was just whether to get CCSVI or not get CCSVI and also whether to stent. Now there is so much more to it. I just read about Dr. Sclafani's CCSVI work being halted and turned into a research study. What a shame. I hope big pharma and these MS Societies don't try close CCSVI in the states altogether!

Dr. Cunning, are you the only doc using IVUS now for CCSVI?

First, I remember in an interview Zamboni saying an MRV was not recommended, and I tool note of this because I had just talked with Dr Hewitt with Pacific Interventionalists, and they offer for an extra $2500 the MRV, the procedure is $8,000.
Does anyone else know the interview I refer to?? (Cece?)

And did I hear correctly? Doc Sclafani is no longer treating????? His work has been halted????This is the first I hear of this and I have an appointment for the fall....someone help me out here.
z

It might be this one, although it is a year old:
www.youtube.com/watch?v=_0bDdwbtdvg

Carol, you are many months behind on the Dr. Sclafani saga!
He is currently treating at American Access Care clinic. He is no longer with the King's County Hospital where all the IRB drama went down.

How exciting to hear this!

First off, my apologies. I read a blog from a year ago that Dr. Sclafani was closed down due to hospital fears..... I did not realize that Dr. S left that hospital after that event and is running his practice elsewhere, as CeCe explained. Sorry for posting that misinformation.

As to the question about PI charging $2500 for MRV, I read that on their website. Actually I read they are charging $2500 for MRV, and another $1,000 for MRI the day before the procedure. And then I think $8,000 for the procedure. Now don't quote me, because obviously I got the whole Sclafani thing wrong.

What I wondered about with PI, although I know they have a great reputation, is why they are relying so much on MRV. I thought that in recent months many IRs have come to feel that the MRV is rather unreliable?

Another thing that confused me about PI, is that their website says they use the Haacke protocol for testing. I was under the impression the Haacke protocol takes 1 week minimum to analyze results.

Yet on PI's website it says the MRI and MRV are done the day before the procedure--so where does the one week analysis come in?

Can anyone explain?

Thank you.

Thanks Cece, phew, I thought that statement was an error, checked w/Karen Moran and was reassured that all is well and Sclafani is going strong! Nothing like a little panic!

My question is if the MRI and MRV are optional or required at PI. I would prefer it to be optional, particularly for self-paying patients. I do not think our doctors are getting $2500 or $3500 worth of value out of it.

I believe PI has joined the Hubbard registry and that the Hubbard registry may require the MRVs. Dr. Sperling in NY also joined the Hubbard registry, does he do MRVs?

Hubbard registry has dropped the Haake MR requirement.

I feel really bad that I INCORRECTLY wrote that Dr. Sclafani's work was halted. I had read a blog from 2009 about that and had not known that since that blog Dr. Sclafani left the hospital and continued his work elsewhere and is very much still practicing. Please excuse the misinformation that I provided. thank you.

Doctor Cumming,
Is the Haacke protocol no longer believed to be as useful? Are you still using MRVs and do you feel they are helpful or necessary?

thank you.
Carol

No worries Carol! Just happy he's still going strong!

Dr Haacke has done great work with MR and CCSVI. The data his group is collecting will be very valuable for tweaking and defining the role of MR. On occasion I find it useful. Part of the issue with respect to the Hubbard registry was problems with getting reimbursed for the MR studies limiting patient enrollment. I do not feel it is necessary at this time.

i am not shut down. That happened over a year ago. I am happily caring for patients on a daily basis in two ambulatory centers in New york city. I have been using IVUS on almost every case I have done since 2009. First as a tool to understand what i was doing, and now as a critical element of my procedures not just for diagnosis but also for evaluating the effects of angioplasty.

I have moved from two patients per week to eight patients per week and now i am gearing up to do 12-15 patients per week as I promised when i was actually shut down in late april 2010. Please do not slow me down by such misinformation. Sadly such misinformation has limited my case volume. I have open days this month as we speak.