This Is MS Multiple Sclerosis Community: Knowledge & Support

So, for anyone who would like to hear Dr. Dake explain this in his own, recorded words and video--CCSVI Alliance has the Brandeis presentation available on our website:
NEW TODAY
www.ccsvi.org

cheer

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

Ok. Thanks.

clearly, there's something going on

With due respect to Prof Dake, I do not know how he could justify his statement that de-stenosis is unlikely to repair myelin. Myelin damage and repair is a two way process even in pwMS. No one knows all the factors which impact the de-myelination/re-myelination process in a normal person or pwMS. So the real answer to the question is: There is currently insufficent data to answer ie we don't know.

Recent research prostulates that myelin damage is not the first step in the etiology of MS (hint astrocytes). But that is not a topic for a CCSVI chatroom.

MarkW

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Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 10 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html

I am trying to be objective and at least give the gentlemen who are the supposed specialists in CCSVI an ear and now you are telling me to disregard what they say? We CANT keep washing over and ignoring findings that do not fit into the CCSVI picture like we want them too. There is to much at stake to simply rely on what we feel is right while we continue to ignore what research is telling us.

It is not objective to quote Prof Dake as an expert in MS etiology, scorpion.
Prof Zamboni has identified CCSVI syndrome, which features stenosed veins, in my book, that makes him world expert on CCSVI syndrome. Prof Dake was one of the first vascular experts to treat CCSVI syndrome, so an expert in CCSVI treatment.
Neither are experts in MS etiology unless I have completely missed their publications in this area.
To avoid any doubt scorpion quote experts in their area of expertise. Look at research rather than opinions or theories.

MarkW

Historical context:
MarkW wrote:
With due respect to Prof Dake, I do not know how he could justify his statement that de-stenosis is unlikely to repair myelin. Myelin damage and repair is a two way process even in pwMS. No one knows all the factors which impact the de-myelination/re-myelination process in a normal person or pwMS. So the real answer to the question is: There is currently insufficent data to answer ie we don't know.
Recent research prostulates that myelin damage is not the first step in the etiology of MS (hint astrocytes). But that is not a topic for a CCSVI chatroom.

Scorpion is confused or is seeking to mislead pwMS wrote:

I am trying to be objective and at least give the gentlemen who are the supposed specialists in CCSVI an ear and now you are telling me to disregard what they say? We CANT keep washing over and ignoring findings that do not fit into the CCSVI picture like we want them too. There is to much at stake to simply rely on what we feel is right while we continue to ignore what research is telling us.

_________________
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 10 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html

Mark and Scorp-
You're both right. Dr. Dake is a cardiothoracic doctor who treats central venous stenosis, not MS. He is not addressing astrocytes, or gray vs. white matter damage.

His remylinaton comment is referring to the fact that opening the veins is not going to heal long-standing damage right away...thus the "drop your cane" comment. He is also trying to protect this science from the miracle you tube cure syndrome, which the media loves to exploit.

We'll understand more in the future regarding blood flow and remylination over the long haul. But for now, let's let him be the vascular expert...
cheer

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

Hi Scorpion. I don't think it's bad to be skeptical. I had the operation last march was one of Sclafani first patients. I did not miracurlasly leap up and run sbout. but I will say that my walking especially upstairs was improved for about three weeks. My cognitive function were quick and lazer like. Now I am still up and down. Much looser better once I get my period and the week after.Much tighter the week before. I use hyperbaric o2 to keep my brain working.For the hour after a session I am looser and much clearer.The brain seems to stay clear longer..Not a cure but its help. I will get treated again I know they missed my azygous and my neck restenosed. So I don't know if you have ms but I will tell you the drugs did zero for me. I think we have a lotto learn about this treatment and the varying veins. I will say my cold feet and hands are deffinately circulatory and oxygen makes me feel better.

According to Carol Schumacher on facebook, Dr. Goodin has agreed to be Dr. Dake's partner? This is excellent if confirmable!
And it was CCSVI Alliance that brought Dr. Goodin and Dr. Dake together?!
This warrants a toast to Dr. Dake, Dr. Goodin, CCSVI Alliance, and all of our CCSVI researchers, advocates and friends!

don't pop the cork yet, Cece
Jeff and I were at the meeting with Carol, and we heard Dr. Goodin agree to work with Dr. Dake, but there's still stuff to be worked out. Hopefully his trial will begin later this year--and hopefully Dr. Goodin will be part of it. And yes, Alliance president, Sharon Richardson, brought these doctors together. She's been encouraging collaboration at all of the Alliance events. Incredible!

In the meantime, here are two new peer-reviewed and published studies from Stanford and Dr. Dake's team---
Retrospective of Endovascular treatment for CCSVI--
http://vmj.sagepub.com/content/early/20 ... 0125.short

and a new, blinded and controlled study on MRV and venous drainage in MS
http://www.ajnr.org/content/early/2012/ ... 7.abstract

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

A toast to Sharon Richardson. Incredible, indeed!
I have popped the cork and drunk the bottle, so there is no going back. It has been a long wait for Dr. Dake's trial. I started reading here in December of 2009. People were getting on his waitlist and expecting the trial to begin in early or mid or late 2010, and then 2011, and now 2012! And in the meantime Dr. Dake has been sharing his level-headed ideas about CCSVI and I have grown to have great confidence in his abilities. We have some terribly bright minds and leaders involved in CCSVI research.

Remember, all the "SP" people were once "RR" people. I used to think it too if I didn't say it: "I don't have anything permanent. Those other people aren't me."

When you are still mobile and independent, it is not something you worry about, not being those things. Unless you are very special (like the man who helped his father, after a stroke, learn again to climb mountains) you don't think it will ever happen to you. You are unlikely to even try help someone who "science" agrees is "beyond help".

By now it has happened to me. Yes, I have lost some of my nervous system.

I have experienced those times, when you are suddenly, and briefly, able to do those things that you thought you never would again, for a short time. I worked with one therapist who tried vainly to help me move my left leg. I saw the surprise on her face, the morning I could raise my knee to waist height. By the next day I couldn't anymore.

So I believe those pathways were not dead. More like the brains of the people in "Awakenings".

Even so, I believe over time, my brain reuses its "control circuits", if they are unused. Parts of the pathway are lost. More and more can be lost, through "use it or lose it". Same goes for my thigh muscle. That, I can see, is not being reused, except for its value as food.

My brain, though, has a massive amount of redundancy. So does my spine. Relearning is still possible until all peripheral nerves are gone.

I know in an injury, those peripheral axons get transected. It currently isn't possible to regrow them. I've never had that accident, though my friend has. I think even she, who is a "walking quad", might be helped by the CCSVI procedure. And we're both trying to keep muscles.

Please keep it to yourself, if you think I'm wasting my time.

It's my time, and I'll waste what I want. :^)

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

walking requires balance, sensation, equalibrium, vision
Some of these abilities are improved even though spasticity is not.
Walking can be improved

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

1eye, I have had many of those "momentary remissions" over the years. Dr. Zamboni has reported seeing this in other patients. The "remissions" can be explained if you follow a theory of a flap or some other obstruction that occasionally stops blocking blood flow. For me, it always happened when I was upright, never laying down. Each time, I could suddenly walk smoothly with perfect balance, but each time lasted less than five minutes.

This kind of "flexible" blockage has been considered by some doctors to be an immature valve, tissue that is able to move, but doesn't do so reliably. But whatever you call it, it's not a stenosis or caused by pressure from an outside source.

Because it moves, this tissue is easily missed because a catheter will push it aside, making it "invisible". If your doctor doesn't use IVUS, there is a method of using a catheter that has a little knob that extends out of the sheath that when dragged back and forth will catch on any protrusions.

Isn't it ironic? You may indeed be "fixable", but talent, technique and technology may not be advanced enough to do the job.

In my opinion, while this is such an unfortunate situation, it still leaves much room for hope.