This Is MS Multiple Sclerosis Community: Knowledge & Support

In case anyone missed these, here are presentations by Ashton Embry and Dr. Hewett done a few weeks ago - worth watching.

http://www.youtube.com/watch?v=VN-YC8JPZ9M

http://www.youtube.com/watch?v=A_R88CJT ... re=related

Thanks for posting these tzootsi. I have a lot of respect for these men. Particularly Dr. Embry as he was one of the big proponents of vitamin D which continues to surprise people in the health field as to how important this little ray of sunshine is, especially for expecting or would be expecting moms.

WeWillBeatMS

tzootsi,
I enjoyed watching these presentations, especially Dr. Hewett in the second presentation speaking about the use of stents in veins. Thank you for posting these.

But, a certain irony strikes me. In the first presentation, Dr. Embry makes the usual points about neurologists and drug companies having a vested interest that counters the development of CCSVI treatment and research.

And yet, the entire second presentation, given by Dr. Hewett who is an interventional radiologist, was basically a 30-minute commercial for Synergy and the CCSVI team at Pacific Interventionalists.

Talk about a vested interest. Are we gullible, or what.

--Tracy

_________________
CCSVI Procedure 9/16/2009 at Stanford
Stent in left and right IJVs
SPMS
Copaxone and Ampyra user

Questor, I 100% agree with your post. I couldn't even watch the rest of the video after Dr Embry said what is "obvious" and implying that people who don't support CCSVI are calling Dr Zamboni a fraud. NOTHING is obvious and I don't believe Dr Zamboni is a fraud... he is a wonderful person. But I don't think CCSVI is obvious at all and I have had the CCSVI procedure. The only two people who have done any real science are Dr Zamboni and Dr Zivadinov. CCSVI is still only a promise and not a reality to most people with MS.

ozarkcanoer

ozarkcanoer,

I can understand you saying that the way in which the IRs who are treating patients now cannot be considered truly "science" because they are not controlled and the procedures are adapting. Even though they are practicing medicine. But didn't Dr. Dake have a controlled study?

And the four clinical trials that are going on right now and are IRB approved are not scientific?

http://clinicaltrials.gov/ct2/results?term=ccsvi


WeWillBeatMS

Ozarkcanoer, well said. I've also had the procedure, a very early form of the procedure and have two stents to show for it. I've admired Dr. Embry for years, but it often seems that those who are searching for hope and answers for someone they love (Dr. Embry for his son, Dr. Zamboni for his wife, etc) are most likely to get a little unbalanced in their zeal. From what I understand, Dr. Zivadinov doesn't belong to this camp, which I consider to be a good thing for scientific objectivity, balanced view, etc.

--Tracy

_________________
CCSVI Procedure 9/16/2009 at Stanford
Stent in left and right IJVs
SPMS
Copaxone and Ampyra user

Part 3 has Q & A segment that is quite lengthy but interesting.

http://www.youtube.com/watch?v=8OaVF1J_sVs

I'm happy to say that it is a reality to me and probably to others in this forum. I watched the video and although I did not see or hear much (there was some) statistical or mathematical information it seemed to me to be very conservative in what he said, and did not deal so much with science or theory but with the practicalities of medicine, with stenting, and angioplasty. I think at some point people will want to know this information regardless of whether they have angioplasty at that clinic.

For instance: he said in no uncertain terms that patency is not guaranteed by a stent, and seemed to me at least to be saying that they only use them as a last resort, in veins, arteries, and in non-CCSVI treatments.

This seems to differ even from my cardiac hospital, where the stent is the default, even for a first event like mine. I got 3.

He discouraged people from asking for routine examination for May-Thurner, and gave stats, which parallel the stats on CCSVI, on prevalence: because May-Thurner is no more prevalent in normals than in CCSVI patients, it would take other symptoms before it would be justified to look for it with a catheter.

In general, this doctor did *not* seem to me to be in *any* way promoting this clinic. At best I would say it's a wash, very informative but *not* selling anything and not saying stay the hell away either.

BTW people use the term CCSVI, on both sides of the wall, as if it is a good thing. I wish it had never been anywhere near me. I believe it exists, but that doesn't mean I *like* it or anything. I am not *proud* to have it. So please don't think of me as *for* it. I am no more *for* or *against* CCSVI than I am *for* or *against* e. coli. Let's say I am a disease-agnostic. I don't even know why I catch colds.

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

Dr. Siskin, in his ccsvi.org video, also talked about why he no longer looks for May Thurner. In 160 patients, he found it in 17%, if I recall those numbers correctly. This was similar to what is seen in the healthy population (asymptomatic MT in 5%-20% approximately).

I disagree with both doctors, I think it is important to find and treat MT because if left untreated, it drains into the azygous. The IRs are not capable yet of finding all azygous stenoses, especially if not using IVUS. It is important to treat MT both because of missed azygous stenoses and because of potential restenosis of any treated azygous stenoses.

I'd like to note for those who may not know that if it wasn't for the passion, interest, and courage of such wonderful leaders as Dr. Zamboni (wife has 'MS'), Dr. Hubbard (son has 'MS'), Dr. Embry (son has 'MS'), Dr. Sclafani (wife has only one IJV), and Joan Beal AKA cheerleader (husband has 'MS'), CCSVI would not be the story it is today:

* Dr. Zamboni discovered and defined CCSVI and continues his scientific studies.
* Dr. Hubbard, the first in the U.S. to receive IRB approval, also created a registry that other doctors can join, to name just two of his scientific contributions.
* Dr. Embry, through his non-profit organization, donated tens of thousands of dollars to BNAC for their scientific studies.
* Dr. Sclafani helped create ISNVD, hosts an annual CCSVI symposium to help disseminate scientific knowledge, collaborates extensively with other doctors to find best practices in treatment, and broke new ground on the Internet by answering people's questions here at TIMS.
* Joan Beal created CCSVI Alliance which disseminates research-based information to the public and which contributes much-needed dollars to scientific research.

Oh, my! Exactly my point!

Often in legal cases, etc, certain persons are prevented from testifying, sitting in a jury, or deciding the case of a defendant because of bias concerns. I've also heard it said, that health practitioners are cautioned against treating those they care most about, because of objectivity concerns.

I understand that objectivity is critical to the scientific method and is important in the practice of medicine.

I'm sure all of the people you mention are sincere and good hearted (as are all of the neurologists and doctors that I know personally). Even so, neurologists are frequently criticized here for bias in their lack of support for CCSVI published studies. I think this same bias concern can and should be applied to those most fervently pushing these CCSVI theories.

I also suspect that many who are proclaiming bias against neurologists w/r/t CCSVI are also believers in the standard conspiracy theories. Who really killed Kennedy, and who was really responsible for the towers coming down?

--Tracy

_________________
CCSVI Procedure 9/16/2009 at Stanford
Stent in left and right IJVs
SPMS
Copaxone and Ampyra user

Oh, please. So now nobody who actually cares for someone sick has any business being involved in the science of discovering how to treat them? Only automatons need apply? I need a break.

_________________
"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 think you may have missed my point or perhaps misinterpreted it. I meant no offense, and I'd like to try again. I never said objectivity is unnecessary; of course it's not. I like to think you're making as strong a case for science and objectivity as I am for passion and courage, albeit with different tones.

I was trying to say that passion drives and stands alongside objectivity, that they need each other. Without the people mentioned above, there wouldn't be any CCSVI studies for us to be talking about. Dr. Zamboni and Dr. Zivadinov, alongside each other. Cheer and Dr. Dake alongside each other. Dr. Hubbard and Dr. Haacke alongside each other, and so on.

I see the interconnectedness and wanted to help others to see it, too. The science, with the continuing help of these people and others, will get the opportunity to play out, and hopefully, the peer-review process will help bring to light answers we're all waiting for.

Anyway, I don't think you really consider Dr. Zivadinov's work to be worthless or suspect because he collaborated and still collaborates with Dr. Zamboni, so from this perspective, I hope you'll be able to understand my point better.

Thank you for the clarification, HappyPoet. I agree with you.

I didn't mean for my posts to take an angry tone, perhaps I have a little anger festering inside, I apologize if I offended anyone.

May the answers we all seek soon come to light.

--Tracy

_________________
CCSVI Procedure 9/16/2009 at Stanford
Stent in left and right IJVs
SPMS
Copaxone and Ampyra user

Perfectly said