This Is MS Multiple Sclerosis Community: Knowledge & Support

The best clinical trials are ones that are multi-center, this is why Dr. Dake's study includes patients treated in FL by Dr. Katzen, specifically because of the variables in different IR's skill set, techniques, etc as you laid out. If results can show despite those differences, it will be stronger support for the effectiveness of CCSVI treatment than if it was only one IR's set of patients. Plus the data can be looked at in subsets by which IR was treating, what type of MS, what treatment, etc etc....

That might be the case where a standard of care has been established already.

But when "best practices" have yet to be known, it only leads to disparity of results which make those results inconsistent and unreliable.

The registry may end up showing that treatment is ineffective when it is not the treatment but the skill or type of treatment provided that is the cause.

I agree with Dr. Sclafani that the doctors need to figure out how best to treat before results can be relied upon in the aggregate. Having such a diversity of IR skill, method and experience only skews the results even more, making them less reliable. Multi-center clinical trials normally don't have problems with inconsistent standards of care practices to contend with like this does. We are not treating like problems in all patients either nor treating in the same way either...the variables become too great in this situation where IR diversity only complicates it even more. IMO we need to eliminate as many variables as possible before trying to collate data. It may cause more harm in the meantime.

Great conversation, Eric, thank you.

I'd nominate what he did for my procedure as "best practices" although I might also be judging it based on results.

Dr. Sclafani, I have a question, actually, and it is a serious one. I showed signs of MS or CCSVI in childhood. Fatigue, cogfog, some other things as well. Of my three children, my oldest has fatigue. My middle child has fatigue, cogfog, irritability, a poor memory, wakes up at night in hysterics about his legs hurting (been to a specialist and was told it was nothing), and sometimes tells me his neck hurts. He is only five. (My youngest child is not a consideration to this, he is so healthy and active, it shocks me.) I may pursue doppler ultrasound scanning for them, just to know. But at what age would CCSVI treatment begin to be an option? What are the increased risks in venoplasty in a child and at what age might those risks diminish? My son is struggling with all these symptoms.

My thought is that he has to reach adult size first, which would be sometime in his teenage years, but I haven't much to base that assumption on. I would also want CCSVI to be further investigated than it is currently.

These statements are not new laura, they have been stated for the past year.

We have decided that restenosis as described by dr zamboni was too high a rate and two high a frequency. it occurs too early. we are trying various methods to treat by different techniques that described by dr zamboni because we want to reduce the restenosis rate and delay restenosis. The methods in vogue right now are higher pressures and larger balloons. but there is no published data yet.

The azygous is part of the problem from the original zamboni articles. we havent really added anything to this yet. We remain challenged by recognition of all of the azygous abnormalities. the treatment is fairly straightforward though.

so, we are still rehashing old stuff looking at different ways to see things.

yes, that is interesting as we calculate percentages

however i was noticing tighter stenoses, more difficult to get a catheter across.

actually patients are thought to have too stiff a collagen in the outer layer of the wall of the vein.
when there is obstruction, it is not uncommon for the vessel above to ddilate. i dont think that what we are seeing is greater than expected.



vasospasm is caused by constriction of the muscle in the wall of the blood vessel. i do not think this is common but on rare occasion i have seen it. it is far more common in arteries.

lets not all get ahead of ourselves.

i noticed an anecdotal observation. something worthy of further analysis
we cant confirm or disprove with more anecdotal experiences of fewer patients.

first of all, you need to maintain a healthy skepticism.
i think i am moving in a logical direction but i dont have even three months followup on the way I have treated you.

This childhood thing really gets to me. if symptoms are really bad, perhaps treatment is appropriate but first we have to get it right in adults. children are just too vulnerable.

but screening is probably closer. we will need to image cohorts of healthy children first to understand the hemodynamics and then we can image sick children....
what to do with what we find????
we need to be concerned with radiation exposure in the child, more vulnerable than adults to radiation.
we need to understand how the child's veins will react

Hi, Dr. Sclafani,

I heard a radio interview with Dr. Code that said over 12,000 people have been treated.

As you and your colleagues work to quantify the "recipe" for a CCSVI venogram, how many treatments are part of your data base?

Are these reports from the few "first responders" like Siskin and yourself, or do they come from a much wider pool of physicians?

Thanks!

Thanks for the answer, Dr. Sclafani. Radiation, lack of knowledge of how the child's veins would result, children being more vulnerable, and the treatment not yet being refined in adults, let alone children.

It would make sense to me that the presence of a pediatric MS diagnosis might be helpful too in choosing whether to intervene or not.

Someday when we hear about Sardinian children, it'll be about them being treated for jugular abnormalities and growing up MS-free.

I wonder what his source is, rosegirl. No one has asked me to pool my data. Nothing i know of has had this type of data. i am not hearing a lot of reports actually.

to date, my experience plus my discussions have led me to my current recipe. In truth, I havent really noted a bullseye yet. I feel more confident in how i treat and what i treat, but i must admit i have no clarity about who i treat. improvements have come in all flavors in many difference patients over variable and unpredictable time courses. I still cannot predict who will be a nonresponder.

My group database is winding its way through irb approval, so that data is not robust yet.

Saw a familiar name in the New York Times this morning at the coffee shop!

http://www.nytimes.com/2011/02/28/healt ... ation.html

A different article, from a few years back:

http://tinyurl.com/6l59prn


Thanks for taking care of Nunzio today.

And for being part of our community!

From the article Cece linked:


Wow! I never heard about this. I'm a big fan, too. This technique must be saving thousands of lives.

that article was a bait and switch, if you ask me

i cannot talk, obviously, about the article details, but sometimes i feel like a got a raw deal and look bad trying to do some good.

o well, i can live with myself

i love what i do now