IVCC/CCSVI, liens et échos de murs de ce mercredi.
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I'm hearing a buzz from British Columbia right now. A meeting is being set-up on August 11 2010, to discus the future of CCSVI and MS.
It looks like the BC Ministry of Health is organizing this with Doctors, the BC College of Physicians and Surgeons, the MS Society, and others scrambling under the radar to attend. This doesn't normally happen during the sumer holidays.
There are doctors going that I know, but i think it's not a public meeting. If anything more specific surfaces I will update this note and repost it
If anyone hears more, please feel free to post new info.
Lets see what the outcome of this is.
WaYnE
*Fourth Location in Mexico is open and Running with CCSVI Treatment
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One small step closer to treatment
MRIs are not a fun experience.
For 90 minutes on July 2, Tracie Welsh lays in the medical equivalent of a toilet paper roll, almost completely immobilized while medical doodads and dohickeys buzz, click and clunk around her.
Because the equipment is so sensitive, the slightest movement can throw the whole thing off and force the MRI technician to start over.
So she can’t move.
Here’s an exercise for you to try at home.
Don’t swallow for seven minutes.
This is what Tracie has to do more than once during the MRI. On the way home that day, I try it and barely clear 40 seconds.
Thankfully, she’s something of a pro by now, having gone through at least six MRIs that she can recall.
Of course, this one is slightly different. This time, they aren’t looking for lesions on her brain to mark the progress of her Multiple Sclerosis.
This time, they are looking for signs of narrowed or blocked veins, the hallmark of CCSVI (chronic cerebro-spinal venous insufficiency).
A new and controversial term in the medical world, CCSVI is a condition whereby narrowed or blocked veins in the neck prevent proper drainage of blood from the brain. The resulting backup is believed to leave iron deposits on the brain, which build up and cause the neurological symptoms of Multiple Sclerosis.
Italian doctor Paolo Zamboni touts balloon angioplasty as a way to clear the veins, restore bloodflow and reverse many of those neurological symptoms.
He calls it the Liberation Treatment.
It’s controversial because it has yet to pass through the gauntlet of scientific studies required for acceptance in the medical community.
So while thousands of MS patients clamor for this potentially life-changing treatment, it’s not available in Canada and is met with skepticism by doctors worldwide. Vancouver’s False Creek Surgical Centre is, at the moment, the only place in Canada to get CCSVI testing done.
For the princely sum of $2,500, they give you the MRI and the followup Doppler ultrasound and send you on your way. For many, the way leads to Mexico, or Poland, or Bulgaria — they are among several countries that currently offer the Liberation Treatment.
Just getting in for the testing has proven to be a yo-yo process. Tracie was originally told she would be tested in July. When she phoned FCSC to try and pin down a specific date, she was told it would be December at the earliest.
She wasn’t happy about that.
Then, out of the blue two weeks ago, she got a call from FCSC saying they had a cancellation. They phoned on Wednesday, and wanted to see her on Friday. That, of course, set her up for two solid days of fretting about the ramifications of the testing.
You can do a lot of fretting in 48 hours.
What if the test is negative?
Tracie has spent the last seven months prowling the internet, reading stories and watching YouTube videos from people who’ve had the Liberation Treatment.
Taken at face value, some of their stories seem miraculous.
People hitherto confined to wheelchairs are on their feet and walking.
Damaged eyesight recovered.
Crippling fatigue lessened.
Feeling in previously numb hands and feet restored.
Hope.
But what if Tracie doesn’t have CCSVI? What if she pays $2,500, goes through this battery of tests and is pronounced perfectly healthy, vein wise?
Tracie insists she’d be no worse off than she was at this time last year, when CCSVI was non-existent and she was facing a future of thrice-weekly needles and steady downward progression.
But I don’t believe that for a second.
Imagine yourself crawling through a scorching desert for days on end, dying of thirst.
Imagine someone handing you a canteen filled with the promise of life-saving water.
Imagine opening that canteen, only to find it filled with sand.
It would be devastating, and I don’t think Tracie is capable of coping with that sort of disappointment. I think she’s lying if she says she can.
Coming out of that MRI appointment on Friday afternoon, she doesn’t have an awful lot to say. She won’t have an official report for three business days and she doesn’t glean much from the few questions she throws at the MRI technician.
What she does have clutched in her right hand are a pair of CDs which contain dozens of pictures from the MRI.
After battling through a couple hours of rush-hour traffic to get back to Chilliwack, Tracie flies through the front door of our home and barely stops to remove her shoes before she’s on the laptop computer, flipping through the black and white images.
“Look at this one,” she says, frantically waving me over. “Doesn’t this look like a narrowed vein? Doesn’t it?”
Her left vein does indeed look significantly narrower than the right, if in fact that is even a vein. We’re not doctors, and we’re certainly not trained to interpret MRIs.
For all I know, it’s her ear.
I feel wrong for providing any opinions, worrying that I may be feeding more false hope to my wife. I prefer to wait for the official report, which arrives via e-mail the following Tuesday.
Even that doesn’t provide much clarification. It’s loaded with medical jargon that is nearly indecipherable. But in amongst all the gobbledygook, there is one line that seems to fly off the page.
“MR venography of the neck demonstrates right internal jugular venous dominance. The cephalad portion of the left internal jugular vein is diminutive compared to the right…”
Tracie’s hopes soar again.
All I can do is preach caution, and remind her that everything in the MRI has to be correlated with a Doppler ultrasound that is still five days away.
And so, once again, it’s hurry up and wait.
Read more in next Tuesday’s Chilliwack Progress Life & Leisure section. Until the next article, follow Tracie online in the opinion section of www.theprogress.com. She will provide regular updates as she deals with the potential risks, rewards and aggravations of chasing down the Liberation Treatment"
*Consensus Document of the International Union of Phlebology (IUP) – 2009
*échos de murs:
*Yvonne Andersen Off to the eye doctor for an exam. Pretty sure my distance vision has changed for the better. :-) We'll see what he says. Then visiting some friends and then home to make some return calls this evening.
Yvonne Andersen Back from my eye appointment. My eyes before angioplasty: 175 and 225 Vision now since angioplasty 175 and 200. There is an increase in vision in one eye and that is the one that has been blurred and the side that I had the two blockages. He told me it's not a significant enough change to get different lens.
Yvonne Andersen Time for me to get to bed. Actually going before midnight for the first time this week. Body is tired, eyes are falling shut, voice is hoarse from talking so much. Have made 23 return phone calls so far and have 17 more to go. :-) It's wonderful to talk to so many MS'ers from Nova Scotia.
*CCSVI Calgary Maybe we should change their names to "Long Term Drug Administration Facilities" because "Care" is missing from the equation when it comes to Long Term Care.
*Ken Torbert Ken Torbert Take Action through Activism Sign up to be an MS activist and help turn MS issues into national priorities. Call on public officials to make changes that benefit people living with MS. Thousands are getting involved -- they recognize their passion and ability to make a difference. Make a difference fight for CCSVI treatment for all MS sufferers
Ken Torbert Ken Torbert Very Happy my wife had angioplasty for her vascular problems even though she has MS.
*The Society's mission is: To mobilize people and resources to drive research for a cure and to address the challenges of everyone affected by MS.
They just erased my post to this wall why? Can't we post to the Society we pay... for?
* Ken Torbert I had 30 min outside with Landon in a hammock under the stars. That was blissful, but also chilly. Denise may be queen of "I can jump" but I just discovered something new: I CAN RUN!! I chased my dog down the hallway to warm up (and back and forth 3 times to make sure it was real). Third time I tried pumping my arms an...d was able to coordinate them too. Physio at the MS clinic in the morning. Yippee! ~Sandra15
*Judy Pentz The National MS Society wants to know one sentence what MS means to you? Guess what I put? "MS means HOPE I am going to get better after being properly treated forChronic Cerebrospinal Venous Insufficiency."
* CCSVI at UBC MS Clinic - Information and Support Day 13: I had 30 min outside with Landon in a hammock under the stars. That was blissful, but also chilly. Denise may be queen of "I can jump" but I just discovered something new: I CAN RUN!! I chased my dog down the hallway to warm up (and back and forth 3 times to make sure it was real). Third time I tried pumping my... arms and was able to coordinate them too. Physio at the MS clinic in the morning. Yippee! ~Sandra
*CCSVI Norway:English:
Hello everyone,
those of you who follow the "wall" on "CCSVI-Norway" have probably already seen the comment from Silje, but I take the liberty to post this again in this message to members of the group:
From Silje:
"Hello everyone
I was taking my Liberation treatment in Bulgaria on July 5. Really hope everyone gets the same opportunity as me.
Tokuda Hospital in Bulgaria has an excellent standard with super friendly staff. I was patient No. 130 down there. Had between 60 and 75% stenosis in the all 3 veins.
I have rrms with powerful attack that come very often. Plus a bladder that almost was completely destroyed. I used an adult diaper every day.
I've tried Betaferon, Copaxone and Tysabri.
But after the ccsvi treatment I'm on my way become a new person:
*No leakage from the bladder.
*No more pain
*All good coordination
*No Shaking
*Much more energy
I just feel completely great:)
So, I really want this for everyone with MS"
Thank you Silje you for sharing your story!
(Sorry that I do not have the time to translate these into Norwegian, but if you have someone in your family who can help you so ask them to help you with translation)
Send a letter to your Minister of Health, send letters to your doctors, send letter to lawyers who want to sue the state etc etc. .. More attention on this will cause more long term information to the masses ! Feel free to use my name as a reference for journalists who want more information!
With wishes for a continued good summer!
PS: The icecreamtruck has been here today and I've filled the freezer with 90 icecreams :O)