This Is MS Multiple Sclerosis Community: Knowledge & Support

Hi Dr Sclafani

Quite surreal tonight putting my husband on the plane to see you then coming home to watch you on tv. Nice work! To be honest the story wasn't particularly informative IMO but you were great.

Not sure is people outside NZ will be able to access the video but just in case this is the link:
http://tvnz.co.nz/sunday-news/september ... 4375/video

Take care and no doubt we will be talking or emailing later in the week.

Great video!
Best wishes to Raymond and Debra Henderson, and Dr. Sclafani.

Thanks for sharing, allynz. Gotta love our rock star.

"We really need people to stop being so dismissive and argumentative about this and start looking at the evidence in cooperation rather than slinging darts back and forth. It's got to end." - Dr. Sclafani

It was hard at the end seeing the bit about people walking without a cane within an hour of the procedure, which sounds like the 'wow' improvement tilt got, after seeing all the challenges faced by the man featured in the clip, and the need to keep expectations in check.

Is there a part 2? The video ends just as their plane leaves ZQN.

How did the procedure w/ Dr S work out for Raymond?

ah.. http://tvnz.co.nz/sunday/2012-09-30-video-5108753

I think we need to be upfront about the benefits people with PPMS can expect. It sounded like Dr. S. was honest about better energy, warmer extremities, etc....but this couple seemed to be hoping (praying and paying) for a miracle. That's very hard to see...and I'm afraid it does the science no good. It also gives naysayers more amunition. Dr. Zamboni was clear in his very first study that people with PPMS who had severe mobility issues had quality of life improvements, but no major changes in mobility. People with PPMS need to know this, reporters need to know this, internet chat rooms need to know this. It's heart-breaking...
Not being "dismissive and argumentative", but I have heard of other doctors who are no longer treating PPMS if the patient had a previous procedure and no benefit. This gentleman had two prior treatments. And he went into serious debt to travel to New York.
cheer

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

There have been good results seen in PPMS in Dr Siskin's study (this was on the first procedure):

chronic-cerebrospinal-venous-insufficiency-ccsvi-f40/topic19572.html
So I wouldn't be discouraged because of the PPMS alone. The high disability, though... He'd had a good improvement in no longer choking after one of the previous procedures. Since the procedure isn't standardized, there is room to wonder if results would have been better if IVUS had been used or the renal vein checked or ...? There seems to be many patients who have had stenoses missed or underdilated.

The media chooses whose story to feature, and whether or not to juxtapose a doctor speaking generally about the improvements that have been seen in patients and a patient speaking specifically about himself and his MS and his hopes. I am not a fan of how the media has presented CCSVI almost across the board.

Thanks, Bart, for finding the follow-up vid. Time to watch...

Mr Henderson was not duped into this procedure. He understood the likelihood of grand outcomes was not great. He made his choices on his own, with no promises. He had his first two procedures early in the days of treatment. He had fleeting improvements and wanted another person to make a second effort. He was not a simple vulnerable man who was taken to the cleaners.

There are some proceduralists who say that if you have had a prior treatment and results are fleeting, then its over for you. I disagree. I think that many treatments are really suboptimal, abnormalities are commonly undertreated, underdiagnosed and when results fade, they are told that it isnt going to work for them. And where is the data for that? In many cases that may be true, but not in all. Also we need to keep in mind that treatment success may require multiple angioplasties and even stents before we can say that there is no hope.

What needs to be emphasized is that many initial treatments in 2010 and 2011 were often limited, done by many of us without any experience with the pathology of CCSVI. It turned out to be quite different from what we imaged. Advising patients that they do not have any further chance with CCSVI treatment is cruel. Abandoning hope without a second look is absurd. Those that advise it may indeed be presumptuous that their treatments were the optimized treatment. I know that my treatment plan now is greatly different from when i started and continues to modify

I think also that the labeling patients as PPMS, SPMS RRMS, and determining their likelihood of improvement is just not proven. These acronyms do not provide a 100% correlate with CCSVI treatment outcomes. The most substantive durable treatment success i have ever had was in someone who was SPMS with an EDSS of 6.0. As much as I would like to peg outcomes to acronyms, it just ain't the case. Let's be clear, severe paralysis with severe spasticity and clonus isnt going to end up with the miracle result very often, if at all. But such patients can have profound quality of life improvements nonetheless and the value of those benefits cannot and should not be judged by others.

_________________
Salvatore JA Sclafani MD
Patient contact: ccsviliberation@gmail.com

I don't speak for the Henderson's I have never met them or spoken to them myself but I fully believe they had realistic expectations going into this having spoken to the tv producers myself.

There is nobody in NZ offering CCSVI. I presume their last visits were to Melbourne where you can no longer get the treatment because they are now undertaking a clinical trial. There is someone in Sydney however it would require two visits because you need a referral first. We looked at all the options, as I'm sure the Henderson's did, and when you weigh up the costs and time involved a trip to NY is no more expensive or time consuming than attempting to go somewhere closer to home. Given this, like us, I expect the Henderson's wanted to give it their best shot so like us felt Dr S. offered that and therefore chose to make the trip to NY.

This was a NZ story about a PwMS coming to see Dr S. In April the same programme screened a story from Channel 7 in Australia about an Australian going to visit him.

When we were considering taking part in the programme too our primary concern was that we wanted to portray ccsvi in a positive light. Our result wasn't a miracle, whilst we were disappointed by this it wasn't unexpected and consequently I am pleased that we were not part of the story. However, all my conversations with the programme makers were very good and their proposed treatment of the story was not the reason we decided not to get involved - the timing simply didn't work for us and we didn't want the public exposure.

I would have liked to have seen the story explain more about both ms and ccsvi but their angle was very much Mr Henderson's story. I was pleased that they didn't overstate the hope of a miracle. The producer I spoke with has a relative with MS so was well informed and I had furnished him with alot of info that I found whilst researching for myself.

The neurologist featured is the patron of the MS Society in NZ. I would have liked the programme to ask him what the alternatives are for a person with MS. He is clearly not a supporter of CCSVI and we know this first hand. Not his fault of course but as we know PwMS have very few options and the Henderson's made it clear that they knew this and that was why they were willing to take a chance on CCSVi and as they stated they had seen some improvements last time and as they and Dr S mentioned even small improvements are worthwhile and valuable.

two things not to forget, even if it wasn't presented by the reporter; which is the problem with the media.

1. Dr S is usually clear (sorry if I have appeared to put words in your mouth ) that he does not treat MS, he is a "plumber" that treats CCSVI; and hence MS terms almost become irrelevant. Any gains for MS, at this stage of knowledge on CCSVI, are a bonus.

2. This guy with PPMS is a person, who taking away hope, may be taking away the only thing he has left. I am pretty sure from what I saw, he wasn't expecting to jump off the operating theatre's table, and perform star-jumps.

His treatment was out of a trial, self funded (with help from family). He and his wife are grown adults with freedom of choice, of which going into debt, is a choice. I see no reason to deny him or restrict his access to treatment.

I too am hoping and praying for the same miracle, but it doesn't mean I expect it. Personally, I think its the last point which may be limiting my response to MS treatments.

It is interesting to think that SPMS, PPMS and RRMS are all descriptors of the clinical categories of MS. But we have no descriptors for the clinical categories of CCSVI. We can discuss in terms of mild, moderate or severe CCSVI symptoms, but those symptoms are not universally agreed upon, nor are the symptoms always easily delineated as being CCSVI symptoms or MS symptoms.

Saw the end of the video! That was actually very well done. Informative and filmed at the clinic including during the procedure. At least one blockage was found and treated. The media hosts reported that he said he was feeling better. This was his second procedure, not his third.

participating in this story is not without risks that it will be misstated. I didnt advocate for this, nor approve easily. it was only after detailed discussions with the hendersons that i understood their reasons for participating with media.

they went into their first procedure without having an understanding of what would transpire. ?They wanted this video to help others have better understanding of this treatment in order to make their decisions.

i think the hendersons are remarkable people. Like many with MS

_________________
Salvatore JA Sclafani MD
Patient contact: ccsviliberation@gmail.com