IVCC/CCSVI, articles et liens de ce samedi. Angioplastie mode d'emploi!

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Barre google de traduction indispensable.

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Vancouver company cashes in on MS treatment

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Informal fraternity links MS sufferers seeking liberation therapy

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Inventor of ‘liberation’ treatment blasts skeptics in Alberta government

The Italian researcher behind the controversial ‘liberation’ treatment for multiple sclerosis patients has written a letter to Alberta’s provincial health board, calling its position statement on the treatment “extremely confusing” and “irresponsible.”

In an Oct. 5 letter addressed to Ken Hughes, chairman of Alberta Health Services, Dr. Paolo Zamboni said he found the Alberta position statement “extremely confusing because it mixes facts, fiction and assumptions . . .

“It is simply naive not to think that CCSVI (the narrowing of veins) significantly affects MS and (to) discourage research in the field. Moreover, it is irresponsible to criticize the pilot study on the value of angioplasty, given the fact that the current standard of care for MS is incapable of preventing progression to disability.”

In August, Alberta Health issued a strongly-worded position paper urging MS sufferers against seeking out the treatment because it is unproven and could have serious health side-effects.

“People with MS should be wary about getting information solely from media stories and reports or from patients’ blogs,” the paper said. “Be careful about where you get information and where you go for treatment.”

The Oct. 5 letter was drafted by Zamboni and Fabio Roversi-Monaco, who set up the Fondazione Hilarescere Foundation in Bologna, Spain, to support medical research into diseases that don’t have clear causes or treatments with satisfactory results.

In a 2008 study, Zamboni reported 90 per cent of MS patients had malformed or blocked veins in the neck that couldn’t adequately drain blood from the brain. Zamboni believes a buildup of iron in the brain ensues from this blockage, causing vertigo, fatigue, vision problems and loss of sensation.

There is no cure for MS. The liberation procedure involves using a form of angioplasty — injecting and inflating balloon catheters into dilated veins to increase blood flow.

Many MS patients, including Edmontonian Jennifer Noriega, get little relief from their symptoms with current medications.

Noriega went to Costa Rica in August to undergo the liberation treatment. Doctors there discovered both jugular veins, plus the azygous vein in her chest, had narrowed to about 50 per cent of their width.

Noriega said after her veins were unblocked during the trip, which cost $20,000, she thought everyone around her was yelling, then realized the hearing in her right ear had come back. Although she still has balance problems, she can now walk on her own rather than hold onto her boyfriend. The bath chair she used to sit in to shower has been moved to the garage. And she no longer needs five- to six-hour naps every day.

“It’s been 11 years of losing (balance, sensation, hearing and sight), so it’s not all going to come back in one day,” said the 39-year-old, who is on permanent disability from her job as a Kindergarten teacher.

The Alberta position paper said there is no proof using balloons in veins is safe, since veins have thinner, more vulnerable walls than arteries. It argues studies show Zamboni’s technique has a high failure rate, with 47 per cent of jugular veins closing again 18 months after being opened with a balloon.

“I think they are trying to scare people,” Noriega said. But while she acknowledged getting Zamboni’s new treatment is a leap of faith, since more studies need to be done to prove it works, Noriega said she risks her life every time she takes traditional MS medication. She was on chemo for one year, which kept a flare-up at bay for nine months.

She took a medication that increases her risk of developing leukemia. She has had allergic reactions to medications and developed an antibody to another. She is currently losing her hair and has developed marble-size tumours under the skin on her legs.

“I’m really disappointed in Canada,” she said, adding she’s pleased Zamboni read and took notice of Alberta’s response. “I thought that was quite cool, I guess, because in Alberta and all of Canada, there is a big MS community.”

She agrees with Zamboni that the position by Alberta Health Services is confusing.

In his letter, Zamboni said more scientific research needs to be done to verify his results and suggests some studies, used to disprove his results, were similarly small and didn’t use the same kind of diagnostic tests to determine blockages in the neck veins.

“The CCSVI condition (or chronic cerebrospinal venous insufficiency where the veins are blocked) has been found to be strongly associated with multiple sclerosis,” the letter reads.

The Government of Saskatchewan has invested $5 million to fund clinical trials for the procedure. Newfoundland and Labrador has launched an observational study to track the progress of patients who go overseas for the treatment.

No one from Alberta Health Services, from doctors to administrators, has spoken publicly about the liberation treatment. The health authority issued another written, unsigned statement Friday.

“Alberta Health Services staff and physicians are committed to the ongoing review of clinical learnings and developments in medical research and practice,” it reads.

“Our analysis reflects all of the current available information and that we will review the clinical trials underway when they conclude and any new information as it becomes available.”

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Multiple sclerosis patients seek treatment that promises ‘liberation’

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Laziness will send us to an early grave

Watching TV. Gustoimages/SPL Energy saving devices making people more lazy
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Thursday, October 28, 2010

A Roundup of CCSVI Info: Thoughts and Observations

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par CCSVI in MS Toronto, vendredi 29 octobre 2010, à 19:41

“One of the things that was really shocking to me is to find that apparently the Canadian Government has decided that central venous angioplasty is too dangerous to even study. I have to say I just find that shocking.

 

Because again, in Canada if you are a dialysis patient and you have a narrowed superior vena cava because of your dialysis, you’ll get central venous angioplasty. They do it, and they know those who do it, that it’s a safe and straightforward procedure, and yet they weren’t able to get their voices heard.

 

I was very surprised to find that the Canadian Government was only willing to listen to the negative side of the argument that it’s an unproven technology and that there have been some complications with angioplasty. That they were willing to completely close down the research avenue before it even opened. That’s just surprising me.”

 

Dr. Andrews 

 

KOMO TV interview:

http://www.komonews.com/home/video/106178788.html?tab=video 

 

 

 

Those at the "The Society" and the CIHR who stacked the deck against even looking at this simple angioplasty treatment should be ashamed of themselves. They do not represent those with MS in Canada. They are killing people by blocking access to the exact same treatment they do for dialysis patients from coast to coast.

 

The Canadian Neuros fighting this below the radar are self centered, and unable to understand what the word "compassion" means. How do you sleep at night? 

 

If you look up the definition of "willful ignorance" you will see this quote below. You would think this term was written just for Neurologists. You know the ones that bitch about their busy phone lines or call Zamboni's peer reviewed study a hoax, or use their influence to shut down CCSVI angioplasty in Canada.

 

Willful ignorance:"The practice or act of intentional and blatant avoidance, disregard or disagreement with facts, empirical evidence and well-founded arguments to forward a hidden agenda."

 

Sheila Clements from a local MS Society Chapter is dead right when she said: "It's all about politics and dollars." 

 

One day people will look back and realize a huge injustice was imposed on so many Canadians. That day is coming and those who block access to this most precious treatment will be held accountable for their willful ignorance.

 

WaYnE

 

 

CIHR and MS Society Summary Report:

http://mssociety.ca/ccsvi/resources/20100826_CIHR_MSSummaryreportFINAL.pdf

 

CTV - Anger greets decision not to fund MS treatment trials:

http://www.ctv.ca/CTVNews/TopStories/20100831/ms-studies-100901/

 

Ashton Embry - Why National MS Societies Are Not Acting in the Best Interests of Persons with MS:

http://www.facebook.com/note.php?note_id=149801465049361

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Vancouver company cashes in on MS treatment

Last Updated: Friday, October 29, 2010 | 7:35 AM PT Comments43Recommend38

Passport Medical says about 19 people a week are getting treatment through their program at a Costa Rican hospital and hotel.
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No Excuses, No One to Blame and No Place to Hide....

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Our meeting with MPP Thursday Oct. 28th

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Kristy Duncan 1st Day back in the House

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40th PARLIAMENT, 3rd SESSION

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par Kathleen Lynch, samedi 30 octobre 2010, à 02:43

Step-by-Step Instructions for Angioplasty Treatment of CCSVI as Performed by Dr. Tariq Sinan’s Team

These notes were dictated to and written by Kathleen Lynch and were reviewed for accuracy by Doctor Tariq Sinan, Interventional Radiologist and Doctor Hussein Safar, Vascular Surgeon

 

Posted with the express permission of Dr. Tariq Sinan of Kuwait

http://www.drsinan.com/en/AboutMe.aspx

 

 

1.      PRE-PROCEDURE MEDICATION:

Patient is given two 75 mg tablets of Plavix and a prophylactic dose of 1.5 grams of Zinacef  intravenously 30 minutes prior to procedure.  

 

 

2.      SEDATION:

Foremost, the patient needs to be comfortable during the procedure, but it is best to use as little sedation as possible and concentrate on pain medication instead. The patient needs to be alert in case of neurological complications due to brain insult, and must be able to perform the valsalva maneuver, to respond to specific instructions regarding inspiration and expiration, and to answer the doctor’s questions. Over-sedation of the patient can interfere with their ability to do any of the above.  

The patient’s apparent discomfort during ballooning can be informative to the doctor. A patient’s lack of discomfort usually indicates the need for a larger balloon. When pain medication is indicated, 25 mg of Fentanyl is administered just before inflation, resulting in a total of 75 mg. (25mg. for each jugular vein and 25mg. for the azygous vein). If the procedure is extensive, another 25 mg. may be administered at the discretion of the anesthetist.

 

 

3.      ANTICOAGULATION:

Well-managed anticoagulation protocol is essential. For an adult male patient, a total of 5000 units of heparin is used, divided into three doses of 2000 units for each jugular and 1000 units for the azygous vein and administered intravenously. Dosage is adjusted to 4000 units intravenously for an adult female patient.  A typical, complication-free balloon angioplasty of the jugular and azygous veins can be performed in approximately 120 minutes, but if complications or difficulties present and the procedure is extended an additional thirty to sixty minutes, another 1000 units of heparin is administered.

 

4.      FEMORAL ACCESS:

Left femoral vein access is typically reserved for academic and investigative purposes, whereas right femoral vein access is indicated for treatment of jugular and azygous vein and valve abnormalities. A size 11 French guiding sheath is introduced and advanced, as it can accommodate most balloons and a wire at the same time. Start with a 4 or 5 French vertebral catheter with an angled Terumo wire with hydrophilic coating, 150 – 180cm in length. Sheath is 10 – 15 cm.

 

 

5.      RIGHT INTERNAL JUGULAR VEIN:

Advance catheter to right internal jugular vein. The valves of IJV are just lateral and superior to the Acromio-clavicular joint. Navigate the valve of the RIJV by having patient perform the valsalva maneuver. Passage through the valve is easiest when it opens during expiration. At this point, do a “run” (contrast dye study) and assess for abnormalities during expiration and inspiration. It is crucial the abnormalities be viewed from an anteroposterior view. Sometimes an oblique view is needed. A regular J-tip 260cm wire is then introduced into the vein, and the catheter is withdrawn from the patient. Before dilation, a second wire is introduced using the vertebral catheter. Ideally, a J-tip stiff 260 cm wire should be used. There are now two wires in the RIJV; the regular Terumo wire and the stiff wire. Remove catheter and position balloon over the regular wire. Balloon size should be equal to vein size just cranial to the valve. The stiff wire remains outside the balloon. Advance the balloon to the valve and begin dilation. Balloon is to remain inflated for two minutes before deflating and dilating again. Repeat dilation for a total of five or six inflations, changing the position of the wire in relation to the balloon each time. The balloon will carry a “fingerprint” of the stenosis, and therefore should be repositioned so the “waist” of the balloon is in a different location in the vessel each time. The process should take at least twelve to fifteen minutes (five to six dilations at two minutes per dilation).  Administer pain medication as needed. Any stenosis seen higher in the vein is not treated at this time. Check for complications with a contrast study. Withdraw from RIJV.

 

 

6.      LEFT INTERNAL JUGULAR VEIN:

Advance catheter to LIJV and repeat the same procedure performed on the RIJV. Again, any stenosis seen higher in the vein is not treated at this time. Check for complications with a contrast study. Withdraw from RIJV.

 

 

7.      AZYGOUS VEIN:

Using a left oblique view and a 100cm long C2 Cobra catheter and Terumo wire, advance to the azygous vein.  The landmark for entry is the bifurcation of carina. If entry to the azygous vein is difficult, have the patient cough. Once in the azygous vein, perform a contrast study during inspiration and expiration to identify abnormalities. A single, regular 260 cm wire is introduced through the catheter into the azygous vein. A Cordis PowerFlex balloon is positioned onto the wire. Typically a 10cm x 4cm PowerFlex balloon is used for female patients, and a 12cm x 4cm PowerFlex balloon is used for male patients. Dilate each abnormality two or three times at two minutes per dilation. Continue until all abnormalities are addressed and treated.  Upon completion, perform a contrast study during inspiration and expiration. Withdraw when satisfactory outcomes are achieved.

 

 

8.      RETURN TO RIGHT INTERNAL JUGULAR VEIN:

Using the same vertebral catheter, return to the RIJV and perform a contrast study during inspiration and expiration to insure reflux is no longer in evidence. Upon evidence of even minimal reflux, repeat procedure (step five) with larger balloon. Withdraw from RIJV upon successful completion of dilation. Dilation is considered successful when there is no evidence of reflux.

 

9.      RETURN TO LEFT INTERNAL JUGULAR VEIN:

Advance catheter to LIJV and perform a contrast study during inspiration and expiration to insure reflux is no longer in evidence. Upon evidence of even minimal reflux, repeat procedure (step five) with larger balloon. Withdraw from LIJV upon successful completion of dilation. Dilation is considered successful when there is no evidence of reflux.

 

 

10.  POST-PROCEDURE:

Hand compression of incision site for 10 minutes.

Best rest.

Nothing per mouth for 4 hours.

Clexane injection four hours post-procedure  (40 mg for females, 60 mg for males) Patient is taught self-injection

Patient discharged with medication and instructions. Plavix: 75mg once daily for 2 weeks; Clexane injections: 2x daily for 1 week; Aspirin: 75-80 mg. for 1 year.

Home rest for 24 hours.

No heat or stress exposure

Sleep in 45 degree inclined position (head higher than feet) for at least one month.

Hyperbaric Oxygen Therapy recommended.

Drink plenty of fluids.

Headed into the Cath Lab with our lead aprons on. I observed Dr. Tariq perform 25+ angioplasties in Alexandria, Egypt.

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