This Is MS Multiple Sclerosis Community: Knowledge & Support

It should be possible to miniaturize various instruments for catheter use: strain gauges, microphones, CCDs of multiple kinds. Voice coils could be used to dilate. Lasers, etc. etc.

Is anybody developing this kind of thing?

Just blabbering...

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"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'_MS' is over - if you want it
Patients sans/without patience

I'd really like to see some study on the reasons for the diverse results. Why does one person get up and walk and even jump after and another is less fatigued and another seems to have no change?

Could this be unidentified flow disturbances that are left untreated? Are some patients getting all of their venous issues addressed, and others only a few? Could some be too conservative treatment, maybe too little balloon pressure for too short a time? Maybe some is simply inexperience since this is so new. Are some caused by flaps that are pushed open during treatment but flap close later? Is it restenosis? Is it simply the degree of disability--they say those with r/r ms fare better than secondary progressive and both better than primary progressive (I know we're not treating ms, but I'm not sure how else to explain this).

This is from awhile back. I don't know much about certifying, how does it get determined? Who sets them?This would help us someday with the 'caveat emptor', wouldn't it? When will certifying be likely in CCSVI?

Hi all, I would like to echo Thekla's request.
The need to understand the 30% positive response to angio treatment is very important even at this stage of trying to get approval to treat more PwMSers.
It is vitally important to understand the effects of angio and to understand the differences for those who do not see benefit, 70% of people are having a poor response, WHY?
As important as it is to get more people treated, it is equally if not more important to understand the process that creates improvement.
As time progresses there is more belief that CCSVI treatment as it is known now is only part of the mechanism of symptom improvement. We need commitment to learning WHY, is it the treatment quality, are PwMSers being assessed soon after treatment to understand the reasons for varying outcomes? If not then that needs to change, the standard of care needs to apply to having these PwMSers researched for answers. It is not enough to treat and move to the next person, there needs to be a standard of care for those who have less benefit from angio.
Finding people (Specialties) who can work with IR's is as important as having approval, it will be too easy to be stopped again and again if the standard of care is not the primary focus.
It is almost as though there needs to be another level of service implemented at the same time as IR's are doing their part, so patients are handed on to another group complimenting the IR's primary work. A Team approach with research and quality care being the objectives.
Regards to all,
Nigel

Cece I see in the comment that there needs to be people looking at the future as well as people dealing with the present.
I think that like so many new 'things' there are people jumping at the opportunity, not only PwMSers but also Radiologists and IR's they need to be accountable. There is examples of life savings involved and where people will need multiple treatments to achieve a lasting outcome. There needs to be some give and take, from the service providers.
It is excellent that the pioneers are out there helping people and there are people who are not receiving equal outcomes, equal service, equal costs and the list goes on.
There will need to be some standardization of many things to establish some level of expectation and value and followup. Not guarantees as such but standard expectations from all involved, providers and recipients.
This may seem to be too early to look at these things, and they do need mindful attention.

Is the 30% figure from Dr. Siskin? His statement was that a third have major (WOW) improvements, a third have minor improvements, and a third have none. So the 70% would be the approximate (66%) figure for people who have improvements.

The WOW improvements are the miracles. I remember someone quoting DrS as saying "holy ... did I just do that?"

The minor improvements might not make your IR drop his jaw, but they're hardly a poor response!

But I agree with what you've said if we use the figure 33% for the poor response and toss a caveat in there that we don't know exact figures until randomized controlled trials are done. That statement was made when Dr. Siskin's group had reached 100 patients treated, now they're up to 200, maybe we need to check back and see if doctor experience has improved the outcomes?

I hope the SIR group is able to figure out how to get more people into the WOW and the mild improvement groups. No MSer left behind....

Agreed Cece. In no way am I against CCSVI treatment for all. I would like to see everyone getting the best chance of improvement and at the very least stopping progression which will likely be the outcome. I don't believe that damage will be miraculously healed, and we will all need to understand that the WOW factor is expected for people in early stages with minimal permanent damage.
Understanding what has been achieved from each persons treatment is a goal, to achieve a goal there has to be intent.
I am constantly amazed and impressed by the work of the dedicated people who are pushing this cause and hope that input from us all will help overcome the glitches experienced and that we all learn from these amazing efforts.
The likelihood of other conditions having insights from this work is also what fires me up.
Thank you people for the blind faith.
Nigel

Just one additional comment on the numbers....for patients experiencing rapid progression, 'no change' could also be a positive outcome. I haven't seen anyone further explain what exactly that last third really was composed of. I see a negative outcome being something worse than before.

I found this comment below, it out lines what Dr. S is also saying about time needing to pass, at the same time preparation and understanding must occur.
Questions to Gary Siskin about his CCSVI work;
Sief Hart Thank you for all you are doing for CCSVI and MS. I had 2 questions as an MS patient and as a GP. 1. When are you guys going to publish your probable mass amount of data so far? 2. What do you think is the main obstacle preventing CCSVI acceptance to mainstream me...dicine?

Gary Siskin To answer your first question, we are preparing our results so far for presentation at some of our national specialty meetings. Keep in mind the thing holding us back is just time because we need time to pass to have significant follow-up....


As far as your second question, I believe a lot has to do with the fact that some basic questions about CCSVI have simply not been answered. There is still not consensus about whether or not venous abnormalities are associated with MS, whether they are directly responsible for some of the symptoms typically experienced with MS, whether treating them truly leads to significant and lasting benefit to MS patients, and which patients are the best patients to offer this treatment to. Those are just a few questions that don't yet have real answers. It doesn't mean that we aren't seeing patients benefit from this procedure...we are, but I think the answer to your question is that these questions don't yet have answers.
http://www.facebook.com/pages/CCSVI-in- ... 0796282297

However we have had reports here of post-procedure progression. One of Dr. Siskin's patients (and recently one of Dr. Sclafani's patients) have shared that they've had progression since the procedure. Now that might be the expected course of MS, but what a letdown.... For actual negative outcomes, we've had rare reports of people experiencing arm numbness immediately after the procedure, that does not go away; and of course procedure complications like the stent migration to the heart last year. I am looking forward to the registry data putting all of this more in context.

NZer1, great find.

The idea of a registry is good.
The opportunities to follow the people who are outside the norm are the ones that will be of the greatest value, IMO.
The examples like Hooch with missing azygos vein and others missing jugglers and the people who progress after treatment are worth their weight in gold.
It will take the genius of Dr. S and his cohort of experts to understand and provide answers.
This will I believe be where the edge is for understanding.
The other important aspect that I keep forgetting is the MRI scans of monthly progression that have been around for some time. Scroll down to about half way on this page for the films.
http://healthworldnet.com/TheCuttingEdg ... re/?C=7561
Somewhere into the picture of CCSVI fits the changing over months, of the disease hot spots, something for the group to work on?
It would appear to be the RR or episodic version of the disease, which is IMO a distraction from the actual disease process, an example of the body adapting through NeuroPlasticity. As though the disease follows particular activity (chemically? disease food?) in the brain and spinal cord, as the NeuroPlasticity moves the bait that the disease attacks.
Finding the damage that persists over time and the cause of that will be the time we make some inroads to disease knowledge, IMO.

Finding the people to work with IR's on these projects? Priceless

Hi Dr Sclafani
I've had ms for 30+yrs, SPMS for approx last 10
Had angioplasty mid may, 60% stenosed right jugular
Terrific results all round, except right hip/leg/foot & right hand not good
No flex in my right leg, no dorsiflexion, and hand is weak/numb

Looking to 2nd angioplasty as now re-stenosing

If the iliac & renal veins are stenosed and subsequently treated, could this benefit my seemingly awol ilioapsoas muscles?

Dr. Sclafani,

I want to thank you again for creating "drsclafani answers some questions." I wish I knew how to express how important it is for people with CCSVI/MS to have a place on the Internet where they can feel safe to ask questions, to debate new ideas, and to learn, all in a peaceful, supportive atmosphere.

My question: For many reasons, I cannot print, by hand nor by machine, the letter you need to accompany my CD of images for use in your book. Would it be possible for you to accept in email the letter if it has an electronic signature? Thank you!

~HP

I posted this yesterday but in the wrong place. My question is about my azygos vein. I was in Albany for the CCSVI procedure last week. Dr Siskin, who as we all know is very experienced, could not find my azygos vein meaning that I may not have one. I am 56 years old and wondered if I should be concerned about this.

HIya Doc. S!

I was tossing this about in another thread but I am really left in the dark on this one!

This is a picture from my venogram showing the blood flow in my iliac veins/IVC (for those playing along at home!).

Can you give me your impression of what is going on here? I have argued that without a 3-d MRV or CT scan it would be difficult to interpret exactly. My doctor argues that without pain and swelling, he can't order the scan!

My symptoms are numbness in both legs and the right is much weaker than the left.

Have you ever seen and/or treated something like this?

What can be done? Do you think this might need to be treated?

Thanks in advance!

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If you can't explain it simply, you don't understand it well enough. - Al Einstein