simple CCSVI

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

Re: simple CCSVI

Postby DrHarris » Tue Oct 11, 2011 12:55 pm

Thank you everyone for feedback on our graphic. Overall, we hope that it can help in understanding where the problems are found within the veins and where CCSVI treatment is focused. There wasn't an intention to make the valve leaflets anatomically correct; they hopefully just represent 'blockages' within the veins at the level of the valve. The valves are where the majority of the blockages/stenosis' are found within the veins which is why we represent them on this graphic. During our intravascular ultrasound (IVUS) IRB study that we are currently conducting, we can actually see the valve leaflets inside of the vein on IVUS. You can learn more about this study on our website: http://www.synergyhealthconcepts.com/synergy-research/

Dr. Harris
Synergy Health Concepts
DrHarris
Newbie
 
Posts: 1
Joined: Tue Oct 11, 2011 12:42 pm

Advertisement

Re: simple CCSVI

Postby Lassy » Tue Oct 11, 2011 2:28 pm

Are you Synergy bashers in this for the greater good of CCSVI or just in it to bash the Doctors?

I don't care who a Doctor is performing the CCSVI procedure they are all trying to do this to help many and in it for the greater good. Those who do not see this should be ashamed of yourselves. Grow up!

Even Zamboni has changed his views on CCSVI as he has been in corespondance with many Neuro Surgeons who are performing the procedure and noticing alot of veins in the brain may be related to this as well. This is being looked at by many Doctors now and no one knows all the answers yet I don't care who they are. At least Synergy Doctors are trying to colaborate with other centers for the greater good to learn more which is more than I can say for many other places who think they are the only ones who know it all.

Try to stop the crap gossip it does no one any good.
Lassy
Newbie
 
Posts: 9
Joined: Tue Oct 11, 2011 12:42 pm

Re: simple CCSVI

Postby David1949 » Tue Oct 11, 2011 2:44 pm

Can anyone post a link to a drawing or picture that accurately depicts a jugular vein valve?
David1949
Family Elder
 
Posts: 642
Joined: Mon Aug 23, 2010 3:00 pm

Re: simple CCSVI

Postby Cece » Tue Oct 11, 2011 3:01 pm

An objection to Synergy has been the marketing efforts. I am unsure whether the CCSVI procedure should be marketed at this time in this way.

Another objection has been, about a year ago, Synergy doctors made the claim that they were seeing 100% no restenosis. This was not true. Without following up with their patients, there is no way for them to even think this was a claim they could make. People believed claims like this.

Another claim that people have believed is that Synergy is the only clinic that treats the valves. This is also incorrect. I have heard this mistaken belief that other IRs don't balloon at the area of the valves too many times from too many Synergy patients.

Another objections has been that Synergy has been treating large numbers of patients but not capturing the data. To that end, the IRB IVUS study that Dr. Harris has linked will be very good. I noticed it mentioned that two other research studies were in the works too. This is something I want for any center treating CCSVI patients. If BCBS and Medicare are denying coverage because there is not enough research to support this, then we need to see that research getting done. One concern has been that for-profit clinics will take too many of the patients, leaving no one willing to participate in the needed research, particularly the randomized controlled trials.

I don't consider myself a Synergy basher, but I am cautious on them.
Cece
Family Elder
 
Posts: 9022
Joined: Mon Jan 04, 2010 4:00 pm

Re: simple CCSVI

Postby 1eye » Tue Oct 11, 2011 6:23 pm

I am not the bash-ful type, and you can "enem-ize" me if'n you don't want to see my posts. Can't help it if people quarrel with the negative, and you see quotes in the positive postings. I am interested to see an accurate illustration, but I agree, don't shoot the messenger. It's only artwork.
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
User avatar
1eye
Family Elder
 
Posts: 2922
Joined: Wed Mar 17, 2010 4:00 pm
Location: Kanata, Ontario, Canada

Re: simple CCSVI

Postby Cece » Tue Oct 11, 2011 8:38 pm

David1949 wrote:Can anyone post a link to a drawing or picture that accurately depicts a jugular vein valve?

I looked but couldn't find one.
Cece
Family Elder
 
Posts: 9022
Joined: Mon Jan 04, 2010 4:00 pm

Synergy CCSVI

Postby MarkW » Wed Oct 12, 2011 5:04 am

Hello Dr Harris,
From your research I think you know that unless an invasive diagnostic procedure using CATHERTER VENOGRAMS and INTRAVASCULAR ULTRASOUND in combination and performed by an EXPERIENCED INTERVENTIONALIST the diagnosis does not meet the gold standard, required to diagnose all occurances of CCSVI syndrome in the neck and trunk.
PLEASE INFORM TiMS WHAT A STANDARD SYNERGY DIAGNOSIS INVOLVES.

Many pwMS are struggling to have the diagnosis and are spending their scarce savings on this. My objective is simple - I seek to help pwMS to spend money wisely. I would like to add more clinics/interventionalists to my list, but want to be sure.
MarkW

Country................Location.....................Interventionalist...............Clinic
USA....................Brooklyn, NY................ Dr Salvatore Sclafani...........American Access Care
USA....................Minneapolis, MN............Dr Michael Cumming............HCMC Hospital
USA....................Phoneix, AZ.............. ..Dr Edward Dietrich............Arizona Heart Institute
Belguim................Aalst.........................Dr Beelen........................OLV Hospital
UK (Scotland).........Edinburgh...................Mr Donald Reid.................Essential Health
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 11 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
User avatar
MarkW
Family Elder
 
Posts: 1151
Joined: Thu Oct 19, 2006 3:00 pm
Location: Oxfordshire, England

Re: simple CCSVI

Postby Endovasc » Wed Oct 12, 2011 10:52 am

I will answer for Dr. Harris. Accurate diagnosis is critical for proper treatment. Synergy is unique in offering the exhaustive diagnostic evaluation. This is primarily with the full Haacke MRV. During the venogram we have IVUS at our disposal. We now have Doppler available in our clinic. Patients best interests are served when we accurately identify and characterize any abnormalities. Only then can we offer the best treatments available for an individual patient.
User avatar
Endovasc
Getting to Know You...
 
Posts: 11
Joined: Sat Jan 22, 2011 4:00 pm

Re: simple CCSVI

Postby Lassy » Wed Oct 12, 2011 10:53 am

For the lady who keeps saying she knows how it has been done or marketed at Synergy have you ever taken the proactive approach to call the Synergy team or email them?

They never once said they had a 100% no restenose rate where did you get that rubish from?

They also never said they are the only ones who treat the valves. Once again another rubish statement from you.

It is good to ask questions and be cautious for the sake of pwMS going for their CCSVI procedures for sure.

But unless you take the high road and ask this team these questions yourself than gossip/rumors and hear say are a waste of pwMS time.

If you care so much then call or email this team ccsvi@synergyhealthconcepts.com

other wise quit these rubish accusations because anything typed on here or any other Social media is fair game for legal slander lawsuit lady.

Be proactive to help pwMS and find these answers out yourself because you obviuosly have strong opinions for someone who has never been to this team so make your opinions either true or false by finding out the truth.
Lassy
Newbie
 
Posts: 9
Joined: Tue Oct 11, 2011 12:42 pm

Re: simple CCSVI

Postby Endovasc » Wed Oct 12, 2011 10:54 am

No member of synergy has ever stated 100% of anything. That is complete non-sense.
User avatar
Endovasc
Getting to Know You...
 
Posts: 11
Joined: Sat Jan 22, 2011 4:00 pm

Re: simple CCSVI

Postby Endovasc » Wed Oct 12, 2011 10:58 am

I have a suggestion to all. If you are going to attribute something to a physician or clinic. Post a reference to something official from them. Simply posting something second or third hand is inappropriate. I state this for all clinics or physicians. Hearsay wastes all our time.
User avatar
Endovasc
Getting to Know You...
 
Posts: 11
Joined: Sat Jan 22, 2011 4:00 pm

Re: simple CCSVI

Postby Cece » Wed Oct 12, 2011 11:34 am

chronic-cerebrospinal-venous-insufficiency-ccsvi-f40/topic15422.html#p151759
Dr.Harris, an associate of Dr. Arata, said that with they type of problem I had, faulty valves, they did not expect to see any restenosis. Therefore he did not think I needed to do any follow-up, maybe a check up at the 6 month point.


chronic-cerebrospinal-venous-insufficiency-ccsvi-f40/topic15061.html#p147868
After quite a bit of trepidation, I had my CCSVI treated recently. The procedure was performed by Dr. Arata at Pacific Interventionists. It was very illuminating to have Dr. Arata explain his approach. This is me explaining what he told me so don't be upset if I don't explain it perfectly.

The way I understand it, his method can best be described as a modified Kuwaiti method where the focus is on valves, specifically malformed or malfunctioning valves, rather than ballooning stenoses. According to Dr. Arata, fixing the valves usually fixes the stenosis. And a stenosis can usually be related to a bad valve. By this method, the valve is stretched open until it more or less snaps open. And stays open. Once that happens blood flow tends to return to normal and the stenosis goes away.

In fact, he reports that since they started to use this method in July their restenosis rate has been a whopping 1%.
Cece
Family Elder
 
Posts: 9022
Joined: Mon Jan 04, 2010 4:00 pm

Re: simple CCSVI

Postby Lassy » Wed Oct 12, 2011 12:18 pm

Cece seriously get a life. Like in the previous post unless you hear something FIRSTHAND from a DR from any clinic yourself your copy and pastes from others is a complete waste of everyone's time. Grow up.
Lassy
Newbie
 
Posts: 9
Joined: Tue Oct 11, 2011 12:42 pm

Re: simple CCSVI

Postby Cece » Wed Oct 12, 2011 12:33 pm

lassy, you asked where I had gotten my information from, and there it is.
There are more reports like these here on TiMS. I take offense to being told that what I have said is rubbish. These quotes are from fogdweller and Jugular, two well-respected members here at TiMS, and I think what they have experienced firsthand and shared with us secondhand is good enough for me.
Cece
Family Elder
 
Posts: 9022
Joined: Mon Jan 04, 2010 4:00 pm

Re: simple CCSVI

Postby Lassy » Wed Oct 12, 2011 12:48 pm

Cece then they need to say this themselves. You are the second, third hand messenger and that's like the telephone game where the actual details/facts get misconstrued.

Again unless this comes from the actual person who was treated it has no merit except rubish gossip.

I hate Tims because no one says their real names who knows who these two are anyway? Maybe they are Naysayer Neurologists for all we know? Ever think of that?

No wonder no one I know likes this site. Everyone uses a fake profile so they can make rubbish statements hiding behind a mask. Easy to say such crazy things when no one knows you your identity is huh?

What is good enough for me is when someone has the clear minded sense to go right to the source ie: Clinic you are accusing of these crazy accusations.

Otherwise make your time more productive than being a shit disturber.

I support all Dr's doing the CCSVI procedure and the ones who do not have my respect our the Naysayer Neurologists.
Lassy
Newbie
 
Posts: 9
Joined: Tue Oct 11, 2011 12:42 pm

PreviousNext

Return to Chronic Cerebrospinal Venous Insufficiency (CCSVI)

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service