Need two volunteers for a study in So Cal.

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Re: Need two volunteers for a study in So Cal.

Postby MrSuccess » Wed Jan 14, 2015 5:10 pm

update ?
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Re: Need two volunteers for a study in So Cal.

Postby CureIous » Wed Jan 14, 2015 6:23 pm

Excellent question! No info this second, been super busy with holidays/ kids/school/candy making and two January birthdays for the kids, so that's my excuse, but will try calling doc tonight, he should be nearly ready for ISNVD, but will have to see what is going on.

Will pass on as soon as I get.

Mark.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Re: Need two volunteers for a study in So Cal.

Postby pairOdime » Tue Mar 03, 2015 5:07 am

I know you are busy Mark....that is a wonderful thing for sure. I know you will pass along an update when something becomes available.
Thanks for keeping us in the loop on this...greatly appreciated. ISNVD is approaching and we are looking forward to that, as well.

Take care Mark!!
It's a paradigm shift
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Re: Need two volunteers for a study in So Cal.

Postby MrSuccess » Fri Jan 08, 2016 11:10 pm

Update ?

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Re: Need two volunteers for a study in So Cal.

Postby CureIous » Sun Jan 24, 2016 7:11 pm

MrSuccess wrote:Update ?

MrSuccess


Abstract has been submitted for this years ISNVD conference. Not sure if he will attend though. More as I get it.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Re: Need two volunteers for a study in So Cal.

Postby dlynn » Mon Mar 07, 2016 2:51 pm

Hi CureIous, hope you are well. Do you have any updates on the original volunteers.
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Re: Need two volunteers for a study in So Cal.

Postby CureIous » Thu Apr 28, 2016 8:08 am

FYI, my local doc who conducted this study is flying to ISNVD this morning.
I got a sneak preview of the two papers he submitted, and although he was
not selected as a speaker, he was invited to do a poster, and they are impressive.
I'll drop him a note later as to publishing online, as it is not my work, and am not sure where to go for the paper. However if you are attending the conference feel free to grab a nice color copy of the paper and chat him up!

I'll see about posting later, shouldn't be a problem.

Mark
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Re: Need two volunteers for a study in So Cal.

Postby CureIous » Thu Apr 28, 2016 7:04 pm

Just touched base with him, he is situated comfortably and can't wait to dive on in tomorrow. I asked about posting, (his papers),he asked me to wait til post conference. Fair enough.

As far as updates for original volunteers, I know the one gal
who was a board denizen here is pushing 3 years, and after the initial stellar
improvements (this script look familiar?), experienced some regression (but definitely not total)
back towards the pre-op situation.

She had a follow up treatment about 3 weeks ago, and was seeing
improvements before even leaving office. I'll reach out to them shortly and post what I know.
I wish y'all could listen on the conversations we have, me, Doc, her S.O. His take on this is unvarnished and raw reality. They've been through the grinder of medical professionals, and surely assisted at least one with his Ferrari payments. If you want the skinny on her before and after, talk with him. He has no problem doing this as needed. A minor inconvenience with some major benefits, which I promise I will detail in the next post before the weekend is up.

It is very difficult to not be very very excited about this, when you are there watching the fairly benign procedure take place, when you are hovering over the UT tech, watching the before and afters unfold, knowing that the just witnessed dilation is only going to get better, along with symptoms, and all of that without pre-post op hassles (and $ub$uquent bill$), basically you are left shaking your head.

Also I feel it bears repeating here, this Dr. is as good as they come, and I mean personal character.
He is happy to share all of it freely. He puts his $ where his mouth is, he has even closed the office on Saturday to keep this thing going, and its not just treating this handful of patients, it is research, documentation, compiling, writing two papers just for this conference. He wanted to do this last year, but pulled back because the t's were not crossed. I's not dotted. He would rather wait, out of respect for the scientific process, just that much more teeth in this.

However much I was totally 100% sold on this before, with every step farther he takes
with even more discoveries, is only bolstered.

I cannot state it any more plainly: there is a There, there.

Oh, it's not THE There, which may not even exist, but his "There", basically
jumps one hurdle, no time for rest though, next hurdle is right there.

I have zero reticence putting my name in the hat. " I'm all in" as they say.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Re: Need two volunteers for a study in So Cal.

Postby dlynn » Sat Apr 30, 2016 11:11 am

Thanks Mark, greatly appreciated and it sounds like all good news
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Re: Need two volunteers for a study in So Cal.

Postby MrSuccess » Tue May 17, 2016 3:58 pm

I understand that this person has now presented his research at the recent
gathering of CCSVI medical professionals.

Can he/she now be named , and have their CCSVI findings discussed here ?

Thanks


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Re: Need two volunteers for a study in So Cal.

Postby CureOrBust » Sat May 21, 2016 4:09 pm

CureIous wrote:Just touched base with him, he is situated comfortably and can't wait to dive on in tomorrow. I asked about posting, (his papers),he asked me to wait til post conference. Fair enough.
The silence is deafening. :wink:
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Re: Need two volunteers for a study in So Cal.

Postby cheerleader » Sat May 21, 2016 5:28 pm

I saw Mark's doctor at ISNVD a couple years ago in San Francisco.
Was not able to attend ISNVD in NYC this year, too busy traveling, so I missed out on all the fun! Dr. Owiesy's poster and info should be made available on the ISNVD site soon, as he is now a member http://www.isnvd.org He is using a very minimally invasive procedure to increase venous flow. As Mark has said, he's had some great results. Hope he is able to publish in a journal, so others can replicate his findings. This will be something else to add to the arsenal (I remain convinced it will not be one thing, it will be a complete program aimed at increasing cerebral perfusion/reducing hypoperfusion http://ccsviinms.blogspot.com/2016/04/t ... years.html)
Hi all, hope everyone is well,
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Re: Need two volunteers for a study in So Cal.

Postby CureIous » Tue Jun 21, 2016 8:53 pm

Apologies. This all came to a head a few days before a major family crisis, coinciding with end of school year x3. I'd rate it on the "epic" side of the scale. Just now getting back to a somewhat even keel. I haven't even spoken to him since ISNVD, let alone anything else. So, not playing hard to get, will post again sometime this week with a bit more meat and less hors d'oeuvres. Cheer is right though, no magic bullets in this, but, and a big but, this Dr. has caught what I've seen missed time and again across the interventional spectrum, and it is only as a result of his fastidious, thorough, and repetitive monitoring, something that I proffer is the Achilles heel of this paradigm from day one.

Namely that (at least at first, and certainly up til now with the many), narrowings come, and then they go. Here today, gone tomorrow. Left right up down really bad poof wide open.

That is precisely why some of us that were "stovepiped", got, and retained, even to this day, whatever improvements were to be garnered from maintained flow.

Goes without saying, that for most (yes, there will always and forever be exceptions), a single treatment, in a single location, is going to have that window of improvement, only to be lost later. Get the whackamole started, it will never end.

His approach is as simple, as it is elegant. There are specific nerves, and nodes, which are involved in the day to day integrity of all our systems . Regulated by the sympathetic, and parasympathetic nervous system.

His lifelong fascination with anatomy (you should see his library), is how he arrived at this same simple treatment for another lifelong pathology that afflicts so many, migraine headaches.

So, when he incidentally found out about this from me, he was interested mostly as an avenue of treatment for his lifelong friend, who had been given up on by the neuroscience, and everyone else. Wasn't MS, wasn't Parkinson's yadda yadda, they tested it ALL.

So what if he simply modified the approach towards migraine associated nerves, and applied that concept towards the nerves of the jugular veins, and associated nodes?

That was the Nexus. The fact that he had ANY results, in such a small cohort, speaks volumes. It's huge.
Especially considering how safe the entire affair is (and I've witnessed numerous procedures myself), both to the patient, and their wallet, there really is not much at all preventing this from being conducted on a larger scale. Oh wait, there's not much $$ involved. Maybe 1,500-3,000 out the door including scans.

And here I see all over FB about people rallying around that one lady raising 61k out of 250k needed, just to go to Mexico, get stented, and have a stem cell transplant.

My guy treated everyone gratis, not a dime. He wants to help that much.

His entire gig with ISNVD is go GET others involved, and he doesn't care who gets the credit.

But those IR's are a tough nut to crack. You know, like the neuros were/are.

Still, he plugs along, dotting I's crossing t's.

We need a systemic approach to this, he didn't just treat their veins, he treated THEM.

Myself, would rather push a wet noodle uphill than try to change medical science. It is resistant to change. As well most science is. Regardless of the evidence. Or logic.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Re: Need two volunteers for a study in So Cal.

Postby 1eye » Sun Jun 26, 2016 12:39 pm

The silence is deafening to me too :-)

I volunteer. What this guy needs is a good-sized multi-center trial that includes both ballooning and not stenting, with all guns blazing (in other words using IVUS) and a placebo arm. Or, he could say, damn the torpedos, f--k placebo, and rely on his certainty that he has solved the restenosis problem. If he has, his success rate should be unassailable. The restenosis rate should be very low. I have not really understood from the discussion so far what the added ingredient to the procedure is. Anyway if this trial can be conducted in Canada, it will help a lot. I think our current Minister of Science will help if that is desired.
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Re: Need two volunteers for a study in So Cal.

Postby vesta » Sun Jun 26, 2016 1:49 pm

CureIous wrote:His approach is as simple, as it is elegant. There are specific nerves, and nodes, which are involved in the day to day integrity of all our systems . Regulated by the sympathetic, and parasympathetic nervous system.

His lifelong fascination with anatomy (you should see his library), is how he arrived at this same simple treatment for another lifelong pathology that afflicts so many, migraine headaches.

So, when he incidentally found out about this from me, he was interested mostly as an avenue of treatment for his lifelong friend, who had been given up on by the neuroscience, and everyone else. Wasn't MS, wasn't Parkinson's yadda yadda, they tested it ALL.

So what if he simply modified the approach towards migraine associated nerves, and applied that concept towards the nerves of the jugular veins, and associated nodes?

That was the Nexus. The fact that he had ANY results, in such a small cohort, speaks volumes. It's huge.
Especially considering how safe the entire affair is (and I've witnessed numerous procedures myself), both to the patient, and their wallet, there really is not much at all preventing this from being conducted on a larger scale. Oh wait, there's not much $$ involved. Maybe 1,500-3,000 out the door including scans.



It sounds like the treatment is one of non invasive manipulation like osteopathy/massage which targets specific nerves and nodes? and that the veins are not dilated through an invasive procedure such as venoplasty but dilated extrinsically?? Sounds OK to me for starters but more info would be helpful.

Best regards, Vesta
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