Buffalo Newsletter

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

Postby jr5646 » Fri Feb 05, 2010 9:48 am

Limo service simply referrs to transportation, people... you're not in Hollywood !!!! sheesh...

and yes, Jeff Beal (Joan's husband) was the first person treated by Dr. Michael Dake (Stanford) in the USA - correct me if I'm wrong, but I think in June or July of 2009.


Man, if I had the inclination, and energy, I'd write a book... It's already all here on TIMS...

Joan are you listening??? You've gotta write a book on this historic moment...
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Postby magoo » Fri Feb 05, 2010 9:54 am

Tears of joy are streaming down my face! Although I know first-hand this is true, it feels good to know more proof wil be coming soon to silence the critics.
I am so happy for all MSers! This is going to be a very exciting time!!
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
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Postby MS_Jess » Fri Feb 05, 2010 10:04 am

Clearly, I'm new, too, but I have ridiculous respect for Cheerleader. Here's why.

She is a not a member of the medical community and has no prior research experience. She was a music major! Yet, she does thorough research and all of the information she shares is backed by science. But most impressive, when her husband was diagnosed in 2007, she didn't accept that the autoimmune component was the only thing going on. She not only took action, she documented her actions for the rest of us. That takes tremendous courage. To actively go against what the medical community recommends, to fight openly, and to share that journey...I just have tremendous respect. We have all benefited from her actions. Yes, her husband was the first to have the stent procedure by Dake at Stanford. And she made that happen. And again, she shared her journey with everyone. She is an amazing advocate. And one gutsy woman!

I'm sure some of the elders are groaning that this is off topic, but I'll take the heat. :wink:

I think it's important everyone know what a difference one activist can make! Thank you Cheerleader!
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Postby yonderboy » Fri Feb 05, 2010 11:09 am

Just a short point,

I also just received my CCSVI newsletter by email. It is only a summary of the original linked posting by MS Jess, and leaves out lots of information and especially the 'this is really big' spirit that explodes out of the original newsletter. Those of you who are just stumbling on this now, please read the original link on this thread.

below is the emailed version of the newsletter:

February 4, 2010

My Friends,

I write to you today as our researchers are completing their analysis of the first of several studies on chronic cerebrospinal venous insufficiency (CCSVI) in multiple sclerosis (MS). The preliminary results are exciting scientifically and will generate a great deal of discussion among our colleagues and the wordwide press. The study itself continues into the second phase.

Good news! We will begin to offer CCSVI Diagnostic Venous Testing beginning this month. Patients may self-refer or be referred by their neurologist. We have also taken the first step towards treatment of CCSVI, a 6-month study titled, Controlled Randomized Endovascular Therapy (CRET). It will evaluate the safety and preliminary efficacy of therapeutic angioplasty. It is important to understand, however, that we cannot recommend endovascular treatment before we fully understand the safety of any approach we may propose. Thus, we intend to perform double-blind controlled trials using a treatment different from those used by either Prof. Zamboni or Prof. Michael Dake of Stanford. Many thanks to everyone who has been following our research, to those who participated in our first study and those interested in phase 2 of the CTEVD study.
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Postby magoo » Fri Feb 05, 2010 11:15 am

I wonder what the different treatment is????? Any guesses?
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
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Postby Cece » Fri Feb 05, 2010 11:38 am

magoo wrote:I wonder what the different treatment is????? Any guesses?


I am really curious too. So: not stenting, not angioplasty? (Or is it just not the same kind of angioplasty?)

Are there any other treatments other than angio and stenting that have been used in cases of venous insufficiency in the legs?
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Postby zap » Fri Feb 05, 2010 11:52 am

My guess is ...

Compression sock over the head?

8)
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Postby CureIous » Fri Feb 05, 2010 12:03 pm

zap wrote:My guess is ...

Compression sock over the head?

8)


That's wrong on so many levels.... lol.
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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Postby Cece » Fri Feb 05, 2010 12:07 pm

zap wrote:My guess is ...

Compression sock over the head?

8)


ok I am laughing! :)
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Postby pgm1 » Fri Feb 05, 2010 12:19 pm

Very funny!!!!!!!!! :lol:
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Postby CureIous » Fri Feb 05, 2010 12:19 pm

magoo wrote:I wonder what the different treatment is????? Any guesses?


No guesses really, but an observation in a recent internet excursion:

Vascular dissection and rupture have been reported as a direct consequence of balloon angioplasty and stent placement in several cases. The development of smaller stents to prevent these complications has been proposed, and de Rochemont, et al.,[5] recently investigated the safety and efficacy of undersized stents in treating high-grade symptomatic intracranial stenosis. In this prospective study, 18 patients, seven of whom had intracranial ICA atherosclerosis, were treated with an undersized stent that was 0.5 mm smaller in diameter than the vessel. The 30-day combined incidence of death and stroke was 6%, with one patient suffering a parenchymal hemorrhage. At 6 months, no ischemic symptoms had developed. Notably, no cases of vessel dissection or rupture occurred. These results indicate that purposefully undersized stents may be safe and effective in the treatment of high-grade symptomatic stenosis. In this study the authors emphasize that the goal of treatment is to restore adequate cerebral blood flow, not to restore vessel diameter completely. Furthermore, the rate of restenosis is believed to be associated with the degree of intimal damage produced by balloon dilation.[4] Considering that an increase in luminal diameter has an exponential effect on flow rate, adequate revascularization can be achieved without complete angiographically confirmed resolution of the lesion."

Of course this is from the arterial side, but much of what was initially learned re vein/stenosis/stenting/angioplasty, had it's genesis in the exploration of treating stenosed arteries. I think we're all aware it's not a precise 1>1 relationship, one is the water that comes through the meter, the other is the rain gutter, but it still gives pause for reflection, on what happens to the internal lining of vessels when balloned, and might go a bit further to explain the 50% recurrence of the Zamboni cohort. It also supports the notion that endothelial health is an important factor here, damage the lining, increase the likelihood of stenosis. Whether by life choices or by angioplasty.

Just some food for thought.....http://www.medscape.com/viewarticle/498762_3
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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Postby Vonna » Fri Feb 05, 2010 12:21 pm

Like everyone else, I am very excited about this wonderful news.

I also wondered what the new treatment might be.

Surely it won't be a medication designed to open up the veins. One that we must take the rest of our lives, with high cost and side effects. Surely.

I don't expect this, but I did wonder what other treatment there might be.

A better, and more hopeful guess it that they will be using some other material to hold the vein open.
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Postby Cece » Fri Feb 05, 2010 12:21 pm

Other treatments used in CVI of the legs:
* compression stockings (innovative new hats?)
* elevation of legs (for ccsvi, elevation of head = inclined bed therapy)
* diuretics to draw excess fluid and reduce swelling
* pentoxifylline, a drug which improves the flow of blood through vessels
* blood thinners (but was this noneffective for Putnam?)
* sclerotherapy, injecting a chemical into affected veins so blood will return using other veins (does not seem to apply to CCSVI)
* similarly ligation or vein stripping to remove a vein (does not seem to apply to CCSVI)
* vein transplant, taking a vein from another area and replacing the diseased vein with healthy vein
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Postby MaggieMae » Fri Feb 05, 2010 12:35 pm

"In the future, we will perform doubleblind controlled trials using a treatment that is different from those used by either Prof. Zamboni or Prof. Michael Dake of Stanford University."

Wow. This is all I've been thinking about since I read this statement. Wonder if Marie has any thought on this? Or GiCi?
Last edited by MaggieMae on Mon Feb 15, 2010 11:01 am, edited 1 time in total.
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Postby pgm1 » Fri Feb 05, 2010 12:37 pm

I have a question,is Dr.Simka a part of this or not?
They mention Dr.Zamboni and Dr.Dake and i thought Dr.Simka was a big name to?

Pam :)
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