any good news lately ?

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

any good news lately ?

Postby erinc14 » Fri Apr 26, 2013 6:26 am

:?:
User avatar
erinc14
Family Elder
 
Posts: 599
Joined: Sat Jun 12, 2010 2:00 pm
Location: Montreal

Advertisement

Re: any good news lately ?

Postby Cece » Fri Apr 26, 2013 8:03 am

There was that study from Dr. Zivadinov that showed that ccsvi venoplasty had a positive effect on cerebrospinal fluid flow.

There are a lot of people 2-3 years out from venoplasty now who still have their improvements. The improvements are lasting longer than I once thought they would.
Cece
Family Elder
 
Posts: 9040
Joined: Mon Jan 04, 2010 3:00 pm

Re: any good news lately ?

Postby erinc14 » Fri Apr 26, 2013 9:15 am

thanks .

one improvement I had right away is that my ears unblocked (which was q few hours a day) and hasn't happened since . the other improvements may have faded...but I don't know for sure .
User avatar
erinc14
Family Elder
 
Posts: 599
Joined: Sat Jun 12, 2010 2:00 pm
Location: Montreal

Re: any good news lately ?

Postby dania » Fri Apr 26, 2013 9:28 am

Erinc14, you may have an underlying problem that is either restricting venous flow or CSF flow. If that is your problem then you, like me and others, restenose. You can get your Atlas checked, see a good chiropractor (ask Dr Flanagan who he would recommend near you) just to see if he sees/feels anything that could be a problem.
User avatar
dania
Family Elder
 
Posts: 1088
Joined: Wed May 12, 2010 2:00 pm
Location: St Lazare Quebec

Re: any good news lately ?

Postby 1eye » Fri Apr 26, 2013 2:45 pm

I wonder how many have blocked ears? I get it on one side, just when I am upright.
"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: 2963
Joined: Wed Mar 17, 2010 3:00 pm
Location: Kanata, Ontario, Canada

Re: any good news lately ?

Postby erinc14 » Sat Apr 27, 2013 6:30 am

1eye wrote:I wonder how many have blocked ears? I get it on one side, just when I am upright.
yes , it was always after I sat up in the morning . but like I said , I haven't had that problem since the angioplasty .
User avatar
erinc14
Family Elder
 
Posts: 599
Joined: Sat Jun 12, 2010 2:00 pm
Location: Montreal

Re: any good news lately ?

Postby erinc14 » Sat Apr 27, 2013 7:22 am

I really like the commentsto this idiotic article .

the title made my blood boil.

The only thing liberated was their wallets

http://www2.macleans.ca/2013/04/27/the- ... r-wallets/
User avatar
erinc14
Family Elder
 
Posts: 599
Joined: Sat Jun 12, 2010 2:00 pm
Location: Montreal

Re: any good news lately ?

Postby blossom » Mon Apr 29, 2013 5:00 pm

quote from article:The “What went wrong?” paper concludes unequivocally that “only a complete halt to [liberation] therapy seems sensible.” The story of CCSVI will not be over until the last frustrated Canadian pays the last Bulgarian or Bengali doctor to be “liberated” for the last time; but from a scientific standpoint, the proverbial fat lady is about halfway between the main performance and the encore. On web forums for MS patients, liberation therapy is already receding into the shadow world of I’ll-try-anything curatives, there to linger with cobra venom and upper-cervical chiropractic.

just who the hell is this guy? of course, there are many out there with his mindset. sounds to me he's never been sick enough with anything that mainstream and science even after yrs. and yrs. and billions spent still have no clue or even treatments that are worth much. and the few that they came up with the side effects can far out weigh the benefit long term. "now to me that's snake oil with a very hefty price". don't get me wrong, i'm not wishing bad on him or anyone else. it's just that a lot of peouple don't get it--until they or a loved one get it.

yes, i would not get ccsvi done again if i knew everything i know today. But, there are some it benefited and are happy they did. the greatest thing in my opinion that it did was not only draw some very very great dr.'s into the arena of the fight to beat these symptoms they call ms but it got a lot of people that are suffering with this out of their box that they had been in because of lack of or misinformation. patients are seeking and speaking up and standing up to mainstream. we're not quite there but hopefully soon.

let this jerk or some of the other jerks that think and talk like he does go face to face with some of dr. sclafani's or dr. amir's or dr. flanagan's patients that have been helped. or when dr. rosa's papers come out. and there will be more. plus, i'd like to have it explained in detail how all these so called mainstream researched scientifically based treatments and such have been taken this far "on a theory only". and, where are we with that--at a big fat 0!

so, ccsvi, chiropractics, dental jaw involvement and he left out stem cells are "snake oil". well, it sounds like this guy from one of his statements cruises the ms sites. he must have attention deficit problems because he's missing a few things.

i'd be willing to bet that if these same kind of people were at their wits end about ready to take their last breath and they were shown people that were in the same fix up walking around and doing better because of a treatment they'd be scratchin off to get it if they could. science and "mainstream theories" would go out the window. but, the big difference that is coming out of all this is that we patients are wonderfully made individuals in our sameness we are individually different--and anyone pushing a "snake oil drug" that is meant for treating all has never worked and never will--after all their theory is only a theory "a snake oil one at that."

you know competion is a good thing it makes for better products and performance. ms and many other name only diseases has been in a loop of very territorial doctors and treatments way too long. manageing with their connections and wealth to ward off any threats to their kingdom.---and i do believe this is the first time they have been challenged and adding to their woes is the internet.
User avatar
blossom
Family Elder
 
Posts: 1377
Joined: Thu Dec 03, 2009 3:00 pm
Location: south western pa.

Re: any good news lately ?

Postby DougL » Tue Apr 30, 2013 4:06 am

blossom wrote:The story of CCSVI will not be over until the last frustrated Canadian pays the last Bulgarian or Bengali doctor to be “liberated” for the last time;

to the person that you quoted Blossom, i will answer

"for 20+ years, my frustrated wife (as well as every tax payer in Canada) paid Canadian doctors to treat her MS. her family raised and donated thousands every year to pay the head of the MS Society in Canada. not once in those years did any Canadian Doctor offer any hope - just this drug or that drug and even then you likely will end up in a wheelchair. sadly they were right, she has used a wheelchair on occasion.

Darn right she's frustrated.

'Liberated' twice and now doing NUCCA. not perfect but improving and maybe in a year or so i will have a wheelchair to sell you.

CCSVI and NUCCA are not a cure for MS. however,if they can keep my wife out of a wheelchair, myself and her family will no longer donate to the MS Society; instead we will pay to visit every last Bulgarian and Bengali doctor in the world."
User avatar
DougL
Family Elder
 
Posts: 375
Joined: Mon Jul 11, 2011 2:00 pm

Re: any good news lately ?

Postby erinc14 » Tue Apr 30, 2013 6:20 am

ms and many other name only diseases has been in a loop of very territorial doctors and treatments way too long. manageing with their connections and wealth to ward off any threats to their kingdom.---and i do believe this is the first time they have been challenged and adding to their woes is the internet. :!: :!: :!:
User avatar
erinc14
Family Elder
 
Posts: 599
Joined: Sat Jun 12, 2010 2:00 pm
Location: Montreal

Re: any good news lately ?

Postby 1eye » Fri May 10, 2013 1:38 pm

Those of us who still can will be fighting this battle until the fat lady sings.
"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: 2963
Joined: Wed Mar 17, 2010 3:00 pm
Location: Kanata, Ontario, Canada

Re: any good news lately ?

Postby erinc14 » Sat May 11, 2013 6:08 am

:-D
User avatar
erinc14
Family Elder
 
Posts: 599
Joined: Sat Jun 12, 2010 2:00 pm
Location: Montreal

Re: any good news lately ?

Postby cheerleader » Sat May 11, 2013 8:05 am

Agree with 1eye, Erin. We're not going away. The ISNVD is not going away. Their conference will be in San Francisco next year, hosted by Dr. Dake. There will be more trials announced, more discoveries. Dr. Zamboni, Mehta and Dake all wrote papers for the 10th International Symposium of Endovascular Therapeutics in Barcelona, Spain
http://www.sitesymposium.org
They can be read at the CCSVI Alliance FB page. https://www.facebook.com/pages/CCSVI-Al ... 2427429118
Here's a bit of Dr. Mehta's summation:

So back to the question at hand, is CCSVI an entity and a subset of MS? On the basis of the significant body of evidence generated from multispecialties across the globe, the answer to that question would be YES. From its initial description, over the past several years, many investigators have continued to add to rapidly evolving scientific evidence that identifies CCSVI association with MS and maybe even other neurodegenerative disorders. As with any new therapy and particularly with MS, the initial learning curve is steep, and many of the publications have emerged without a standardized approach to the diagnosis, intervention, adjunctive treatments, and critical endpoint analysis. It would have been impossible for any single individual, institution, or specialty to discover a phenomenon, invent a procedure, and identify all of its perceived benefits, particularly in a disease state as elusive as MS. Our understanding of CCSVI and its implications in MS patients has evolved significantly over the past several years and today MS societies worldwide are committing millions of dollars to CCSVI related research projects. The ongoing collaborative efforts among national and international multidisciplinary research teams to better understand the implications of CCSVI in MS is underway, and it is likely that this evidence will help shape the future treatment strategies for not just MS patients but also those with a variety of other neurodegenerative disorders.

Jeff's 4 years past treatment (yikes...this is taking a long time) He's skiing black diamond runs, and working full time. No MS progression, normal gray matter on MRI. We're commited to funding this research, speaking out and seeing it thru. Yes, he's better, and that was the original goal. But there's more to learn, and if we can help people with other diseases of neurodegeneration, we're there.
hope that can be considered good news :)
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
User avatar
cheerleader
Family Elder
 
Posts: 5071
Joined: Mon Sep 10, 2007 2:00 pm
Location: southern California

Re: any good news lately ?

Postby erinc14 » Sat May 11, 2013 8:35 am

and thank you cheer for for all your work !
User avatar
erinc14
Family Elder
 
Posts: 599
Joined: Sat Jun 12, 2010 2:00 pm
Location: Montreal


Return to Chronic Cerebrospinal Venous Insufficiency (CCSVI)

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service