New MS Treatment?

[Villagemaid]

Well...what can I say? I got the tests done and guess what?

BOTH JUGULARS ARE NARROWED

Not a surprise really, since everyone with MS getting tested has it.

And now, it's off to Bulgaria to get them fixed.

Since Canada is SO frickin' crazy for not offering treatment to Canadians in their own country


And I will be doing a rally out in front of City Hall (or the MS Clinic at the Hospital) and I will have a petition for everyone to sign so i can send it Parliment.

Will keep you posted.

[peaceseeker]

Well...what can I say? I got the tests done and guess what?

BOTH JUGULARS ARE NARROWED

Not a surprise really, since everyone with MS getting tested has it.

And now, it's off to Bulgaria to get them fixed.

Since Canada is SO frickin' crazy for not offering treatment to Canadians in their own country


And I will be doing a rally out in front of City Hall (or the MS Clinic at the Hospital) and I will have a petition for everyone to sign so i can send it Parliment.

Will keep you posted.

Such great news!...I'm so happy for you Villagemaid!

I have an appointment with my GP today to get a referral to the False Creek Healthcare Centre.

[Villagemaid]

AWESOME!!! Hopefully it won't be too booked up. Too bad it costs $2300......

[peaceseeker]

Int Angiol. 2010 Apr;29(2):109-14.
Extracranial Doppler sonographic criteria of chronic cerebrospinal venous insufficiency in the patients with multiple sclerosis. http://www.ncbi.nlm.nih.gov/pubmed/20351666

Simka M, Kostecki J, Zaniewski M, Majewski E, Hartel M.

Department of Angiology, Private Healthcare Institution SANA, Pszczyna, Poland. [email protected]

Abstract
AIM: The aim of this open-label study was to assess extracranial Doppler criteria of chronic cerebrospinal venous insufficiency in multiple sclerosis patients. METHODS: Seventy patients were assessed: 49 with relapsing-remitting, 5 with primary progressive and 16 with secondary progressive multiple sclerosis. The patients were aged 15-58 years and they suffered from multiple sclerosis for 0.5-40 years. Sonographic signs of abnormal venous outflow were detected in 64 patients (91.4%). RESULTS: We found at least two of four extracranial criteria in 63 patients (90.0%), confirming that multiple sclerosis is stronghly associated with chronic cerebrospinal venous insufficiency. Additional transcranial investigations may increase the rate of patients found positive in our survey. Reflux in internal jugular and/or vertebral veins was present in 31 cases (42.8%), stenosis of internal jugular veins in 61 cases (87.1%), not detectable flow in internal jugular and/or vertebral veins in 37 cases (52.9%) and negative difference in cross-sectional area of the internal jugular vein assessed in the supine vs. sitting position in 28 cases (40.0%). Flow abnormalities in the vertebral veins were found in 8 patients (11.4%). Pathologic structures (membranaceous or netlike septa, or inverted valves) in the junction of internal jugular vein with brachiocephalic vein were found in 41 patients (58.6%), in 15 patients (21.4%) on one side only and in 26 patients (37.1%) bilaterally. CONCLUSION: Multiple sclerosis is highly correlated with chronic cerebrospinal venous insufficiency. These abnormalities in the extracranial veins draining the central nervous system can exist in various combinations. The most common pathology in our patients was the presence of an inverted valve or another pathologic structure (like membranaceous or netlike septum) in the area of junction of the IJV with the brachiocephalic vein.

PMID: 20351666 [PubMed - in process]

[peaceseeker]

Risk = minimal (as opposed to the many side effects of current medications)

Cost = minimal - $1,500/person (roughly the same cost as one month's worth of Interferon beta-1a)

Benefits = most encouraging (as opposed to current medications which provide little to no relief of symptoms relating to MS)

Please find the time to listen to this...

Audio version from May 6 Canadian subcommittee on neurological disease hearing
http://parlvuvod.parl.gc.ca/StreamLogge ... 019448.wmv

Transcript available here...
http://www.facebook.com/notes/ccsvi-in- ... 3940757210

[Villagemaid]

Hey peaceseeker.......

I AM GOING TO COSTA RICA ON JULY 12TH FOR THE LIBERATION TREATMENT!!!!

[peaceseeker]

Hey peaceseeker.......

I AM GOING TO COSTA RICA ON JULY 12TH FOR THE LIBERATION TREATMENT!!!!

Yahooooo!...again, I'm so happy for you!

[bcbudrockz69]

good luck hope it works and canada finaly clues in

[peaceseeker]

There is no reason whatsoever that the testing and treatment of CCSVI (if found) should not be fully funded by our 'healthcare' system...no reason whatsoever. Further, and with respect to the issue of 'costs', there is no reason whatsoever that MS patients should not be able to pay, at their own expense, to have the testing and procedure done...no reason whatsoever. This is not rocket science we're dealing with here...the procedure is relatively simple. The system requests that people with MS have patience while tests are completed...tests that could take many years to complete! MS patients do not have years to wait for the results...results that will most likely reflect what is already understood and accepted by 47 other countries around the world. Why is the system (and neurologists) here in Canada, a country which has the highest per capita of MS cases, show such resistance to a procedure that, time after time, shows improvement to the lives of those with MS?

Check out this latest article (my emphasis added)...

Not available in Canada
MS patients eager for a breakthrough surgery are facing more resistance than they expected
by Anne Kingston on Monday, May 31, 2010
http://www2.macleans.ca/2010/05/31/not- ... in-canada/

'Like tens of thousands of Canadians afflicted with multiple sclerosis, Rebecca Cooney greeted Paulo Zamboni’s much-publicized research late last year with excitement. Zamboni, an Italian professor of medicine and a former vascular surgeon, brought a fresh lens to a disease long diagnosed as an incurable neurological condition: he found that all 65 MS patients in his study had stenoses, or blockages, in veins in their neck or thorax, a condition he dubbed chronic cerebro-spinal venous insufficiency, or CCSVI. After their blockages were cleared with a basic venous angioplasty, many found their symptoms improved; others saw the degenerative disease’s progress halt altogether. Zamboni’s findings were hailed as a potential breakthrough in MS research, a field focused on drug trials. Proof that the disease had a vascular component, a theory bandied for a century, was viewed as a potential game-changer offering rare hope for MS patients.

One of them was Cooney, a 42-year-old Ottawa resident diagnosed 12 years ago. Since then, crippling fatigue forced her to quit her federal government job as an international financial underwriter. But when she set out late last year to find out if the treatment could work for her, she discovered her M.B.A. and years of Byzantine deal-making were no preparation for the Kafkaesque maze before her. Like many others, Cooney learned the extent to which MS has been colonized as neurologists’ exclusive turf. When she visited her neurologist for a referral to a vascular specialist last November, he refused. Zamboni’s work intrigued him, he told her, but lacked scientific rigour and has not been duplicated. His resistance was echoed by the neurological community and the MS Society of Canada, which called for clinical trials, which can take years. “He told me: ‘I would be a laughingstock if I referred you,’ ” Cooney says.

Undeterred, she travelled to a Detroit hospital in February, paying US$3,000 for CCSVI imaging based on Zamboni’s complex protocol. Cooney returned to her neurologist with scans showing severe stenosis in two jugular veins. Still, he refused to give her a referral. Her GP was more helpful, calling vascular specialists—all of whom said that because Cooney has MS, she needed a neurologist’s referral. Finally, she emailed a cardiologist who had treated a friend. “I told him I had headaches, numbness in my left arm, pain in my chest, and severe stenoses of my jugular veins—all of which is true,” she says. She didn’t mention she had MS or that the reason she wanted to see him was so that he could track her progress after CCSVI treatment, which she received in the U.S. last week. He agreed to see her next month. Cooney regrets the omission, she says: “I want to be able to tell my doctor everything.”

Of the CCSVI procedure itself, she says: “I’m not expecting miracles.” But four days later, she reports the ringing in one ear has vanished, as have her crushing headaches. She’s also able to bend her right leg getting out of bed in the morning and has renewed strength in her hands. When asked where she went for treatment, she refuses to say for fear the clinic will be shut down.

She’s not being paranoid. CCSVI resistance mobilized quickly. Deborah Thorarinson of Calgary found herself in a twilight zone late last year when she called every private clinic in Calgary and Edmonton on behalf of her husband to see if they offered CCSVI imaging. All said no, using wording that was eerily similar. “It was like they were reading from a script,” she says. Her husband travelled to Vancouver’s False Creek Heathcare Centre, where he learned he had severe stenosis. In April, Mark Godley, False Creek’s medical director, told Maclean’s the clinic would start offering CCSVI treatment starting this month, a statement he was forced to amend after running into bureaucracy. (He now says it will be offered in a clinical trial within the next few months.)

Last month, Montreal’s Westmount Square Medical Imaging, the only other private clinic in Canada offering CCSVI scans to MS patients, was ordered to stop by the Collège des médecins du Québec, the body governing the province’s medical doctors. Jeffrey Chankowsky, a neuroradiologist and McGill University professor, was stunned, he says. He’d scanned 125 people willing to pay $450 and had a waiting list into June. In a letter, the Collège said CCSVI has yet to be proven “a medical fact,” even though 47 countries now recognize CCSVI as a medical condition. The letter also noted that neither the Quebec Neurological Society nor the association of Radiologists in Quebec had signed off on it. “It’s the first time we’ve ever been told we couldn’t scan a body part,” Chankowsky says. The clinic routinely provides imaging, such as a virtual colonography, for conditions with no medical indication. “Nobody is stopping us from doing that. But somebody’s stopping MS patients from screening their necks.” Yet someone without MS can have CCSVI screening, he notes.

The medical double standard extends to venous angioplasty, a procedure done in Canadian hospitals for 25 years. (The accepted treatment for idiopathic intracranial hypertension, for example, is a venous angioplasty and stenting.) Yet when treating MS patients’ blocked veins, venous angioplasty has been deemed “experimental” by the medical establishment and by provincial governments that refuse to cover CCSVI scans or treatment until more research is done.

Sandy McDonald, a vascular surgeon in Barrie, Ont., currently conducting a CCSVI imaging clinical trial, performed six venous angioplasties on MS patients pro bono this year and witnesed improvements. Venous abnormalities in any other part of the body are treated, he says. “Why should the neck veins of MS patients be any different?”

That question is being asked at a parliamentary subcommittee investigating CCSVI that met for the second time this week. It’s a forum that pits the MS establishment’s wait-and-see clinical-trial approach against MS patients who don’t have the luxury of time. In early May, Janet Salloum testified on behalf of her 32-year-old sister Michelle, a mother of three who has been immobilized since her MS diagnosis 18 months ago: “It’s like watching someone drown while people test flotation devices,” she said. McDonald, who receives 300 calls a day from MS patients wanting to be scanned, also appeared, estimating that scans and treatment cost some $1,500, less than the cost of a month’s prescription for many MS drugs. Cooney also testified, as a co-founder of msliberation.ca, a group pushing for CCSVI testing and treatment in Canada.

Progress is being made. Detroit-based physicist Mark Haacke has worked with clinics and hospitals across Canada setting up CCSVI imaging based on Zamboni’s protocol. He expects five sites to offer it by the end of June. Haacke believes a CCSVI-MS link exists but wants the conditions to be seen as separate. “We need to stop saying CCSVI is related to the etiology of MS, but rather point out that there is another disease called CCSVI and many MS patients have it.” Double-blind research studies are important, he says, but shouldn’t prevent doctors from treating MS patients with CCSVI on compassionate grounds: “Not to deal with a clear vascular problem is a violation of the Hippocratic oath and is unconscionable.” Last week, Haacke filed paperwork to create the International Society for Neuro-Vascular Disease, a hybrid that will focus on MS and other blood-brain barrier diseases such as ALS and Alzheimer’s. It’s a beginning. Once specialists can let go with their preoccupation with protecting turf, who knows what medical miracles await.'

[peaceseeker]

More power to them!

MS patients claim discrimination in treatment access
http://www.ctvbc.ctv.ca/servlet/an/loca ... lumbiaHome
By: ctvbc.ca
Date: Wednesday Jun. 2, 2010 3:00 PM PT

'People living with multiple sclerosis are a filing a discrimination suit against the B.C. government, fighting for access to what some believe could be a miracle cure.

Friends Rick Pereira and Martin Dimitov both suffer from MS. Every day, Pereira visits a Burnaby care home to help Dimitov.

Though both were diagnosed at the same time, Dimitov's symptoms are so advanced, his vision is eroding daily. The former semi-professional soccer player can't sort out his vitamins without assistance.

Many MS patients believe that a simple vascular procedure can ease and even eradicate the debilitating effects of MS.

Dimitov and Pereira both say that the so-called "liberation" or "zamboni" treatment is like pulling a drowning person out of the ocean.

"Because it treats the cause, it would definitely help. All the evidence is showing that everybody who has had this done has been helped in one way or another," Pereira told CTV News.

Dimitov is even more optimistic. "I know it is going to make me to stand up, make me walk, make me run," he said.

There are now MS patients across Canada who can walk again after having the treatment. The problem is that they had to travel to India, Italy or Poland for it, because Canadian doctors and governments haven't given it the go-ahead.

That's why Pereira and Dimitov are part of a discrimination complaint being heard next week by the B.C. Human Rights Commission.

The B.C. Health Minister says more research is needed before his government can commit to anything.

"There's a lot of reviews are being done around the world about the so-called Zamboni procedure. We need to allow those to conclude," Kevin Falcon said.

A federal sub-committee is also looking at the liberation treatment.

But reviewing the treatment and doing something about it are very different things for Pereira. He's got time before his symptoms worsen, but believes that time is running out for his friend.

With a report from CTV British Columbia's Peter Grainger'

[Fritzthecat]

I can not believe the roadblocks being put up here in North America with regards to CCSVI and the Liberation Treatment!
It is, to me, UNETHICAL.
How else do I respond to reports that the very people charged with researching CCSVI in MS are out to "disprove" it?
How else do I respond to people having a this procedure denied while research that involves destroying the immune system with chemo drugs and then rebuilding them with stem cells (one person already has died from this) is not only allowed but encouraged?
What about the rush to fast track new drugs?

For anybody who does not understand, it was explained to me like this:
Imagine a boat has a hole in its hull and is sinking. Most people are rushing around trying to figure out better ways to pump the water out. Dr. Zamboni comes along and says, "I found the hole int he hull, and I can patch it."
The rest of the people scream at him, denounce and say, "But there is not proof that is what is causing the ship to sink and besides, we just built this new, faster more expensive pump, and you are using junk science!
"

[peaceseeker]

I can not believe the roadblocks being put up here in North America with regards to CCSVI and the Liberation Treatment!
It is, to me, UNETHICAL.
How else do I respond to reports that the very people charged with researching CCSVI in MS are out to "disprove" it? ...

Thanks for posting in support, Fritzthecat. I sense and appreciate your frustration...I wish there were more like you.

Some info I presume you already know...regarding the recent allocation of 'research funding' for the study of CCSVI (my emphasis added).

post can be found here - http://www.facebook.com/note.php?note_i ... 297&ref=*bleep*

'Today, the gray area has been eliminated. It's now just black and white. We have been patiently waiting to see if the National MS Societies in Canada and the US were actually going to go to the specialists who understand CCSVI in patients with MS. Drs. Dake, Haake and BNAC were all applicants for funding of their research. I know there were others who have studied CCSVI in patients and applied for funding. None of these very experienced doctors were given any money. No vascular doctors were awarded any research grants.

In the US, the money was awarded to 3 "insider" researchers--neurologists and doctors who are on panels, advisory committees for the NMMS, and have received NMMS monies before.
In Canada, Dr. Freedman (CCSVI is a hoax) was given funds.

An MS patient of Dr. Aaron Miller's (head neurologist of the NMMS) made this post on ThisIsMS.com tonight-regarding the study--

"I saw my neuro last night. He is the head NMSS neuro, the one who opened the panel discussion at the AAN meeting in Canada in April by saying we all know MS is an autoimmune disease.

He mentioned to me that today was the "big day", and that the studies being funded were diagnostic, not treatment based. I said, ....to prove Zamboni's theory he said, .....no, to disprove it."

http://www.thisisms.com/ftopic-12178-30.html

So, now we know where we stand. Dr. Miller has made it clear. The research grants have made it clear. The line has been drawn in the sand. These studies are being funded to disprove Dr. Zamboni's research.

Where does this leave us? I believe we are now in the drivers' seat. We are not passengers in the MS Society mobile anymore. They have given us a very clear response. Now we take our money, our influence, and our power for ourselves. We use the connections we have made across national boundaries and languages--here on the internet--we organize and we mobilize money and research and treatment. We work with the vascular doctors, we work with the IRs, we support Dr. Zamboni and all of the brave, pioneering doctors who have taken up this challenge for us. We can do this.

I will not tell you how to donate your hard-earned money and volunteer hours. That's not for anyone to decide but you and your family. But I will tell you that the National MS Societies are not the end of this discussion. Neurologists can disprove Dr. Zamboni's research as much as they want. They cannot change the reality of an IR finding bilateral jugular stenosis. They cannot stop a vascular surgeon from encountering venous reflux. They cannot change a research paper written on discovery of CCSVI in 95% of pwMS. They cannot diminish my husband's return of energy, ability to hike, bike and ski after angioplasty. They cannot change the reality of the hundreds of patients finding symptom relief and remission from their MS. And they will not stop us from speaking out and looking for the truth and healing. Using science, and medicine and our God-given gifts. They may have some money (well, maybe less next year...) but they cannot buy the truth. The truth is free.'

[strwbrrydvl]

A relatively simple procedure that has shown results. Hello...Canada? Are you listening?

[peaceseeker]

A relatively simple procedure that has shown results. Hello...Canada? Are you listening?

Thanks for posting in support, strwbrrydvl...much appreciated.

This is a start...the debate (about CCSVI) has made it into the House of Commons. I watched the live stream for 3+ hrs. last night on cpac (haven't yet been able to locate the archive). It was great listening to the words of Dr. Kirsty Duncan - such a positive voice for those suffering from MS...I believe Dr. Zamboni is slated to appear today.

[Fritzthecat]

Kirsty Duncan and Peter Julian were great last night!
Like Kirsty pointed out, THERE IS NOTHING NEW HERE except the application.
The procedure is safe, tried and tested. It is offered for Kidney Dialysis patients when their jugulars collapse so why can't MS patients have it too? If it is safe for renal patients.....