This Is MS Multiple Sclerosis Community: Knowledge & Support

[Cece]

There have been a lot of news articles over the last week!

Philip’s father, Gerald Janes, spent two weeks visiting with his son in Nova Scotia. He said while his son is still in a wheelchair, he is performing tasks that were impossible just a few weeks ago.

“He took out a 2 litre jug of milk and poured it with his left hand,” said Gerald. Before the treatment, Philip had lost almost all use of his left hand.

Gerald said Philip has ordered a new battery for his motorized scooter. It had been parked as his conditioned deteriorated. Gerald said Philip now has plans to get out and do more.

“Yesterday he was looking after a pot of stew in the crockpot, and making phone calls at the same time.”

Gerald said while it doesn’t sound like much, these are the little things that most people take for granted, but which Philip was unable to do.

www.nlnewsnow.com/News/2011-04-04/artic ... reatment/1

[Cece]

Ada Russell feels like she has awakened from 14 years of sleep.

A couple of months after treatment, the woman — who spent the past 14 years in a wheelchair, had trouble staying awake, was always fatigued, had constantly cold legs, and had little ability to move her arms — has undergone a miraculous turnaround of her own.

“It is like I have a new life,” Russell said in her home in Curling. “I am like a new person. I can’t explain it, but I am overwhelmed. I can do things now that I could never do (since her onset of multiple sclerosis).”

The woman who sometimes had trouble holding a fork is now exercising and weight training.

Before the procedure, she said she had trouble getting in a vehicle to drive from her home in Curling to another part of Corner Brook, and she would suffer for hours after. However, the couple recently drove to St. John’s, a three-day trip, and she said it was amazing. It was the early 1990s the last time they were able to do something like that.

“Winning the (Lotto) 6-49 on a Wednesday night would not give you the feeling she has now,” he said. “I am absolutely amazed by the results.”

www.thewesternstar.com/Living/2011-03-2 ... -growing/1

[Cece]

At the end of the first month I felt my concentration had improved. People with MS use the term “cog fog” to describe the deterioration in cognitive functioning. Friends noticed that I no longer needed regular naps and that I focused better on conversations. After three months, I felt I was functioning mentally at least as well as I was a decade ago.

There were other changes, too: I’d had neuropathic pain (caused by damage to the nervous system) in my right leg for many years. That went and has not returned. After years of not recalling my dreams – an observation reported by many with long-term MS – I have, for the past six months, remembered them again. My need to get up at night to urinate also improved slightly, from three to six times to one to three times a night – something much appreciated by my wife.

My walking and balance have not changed over the past six months, and I still rely on my Musmate walking aid and trekking poles to get about. But, on the plus side, my osteopath David Harsant, at Oxfordshire’s Multiple Sclerosis Therapy Centre, who made extensive notes before and since the procedure, reports gradual improvement in muscle tone, stiffness and spasm in my neck and back. He says my neck muscles felt ”matted, congested and were indistinguishable.’’ but after the venoplasty ”the matted sensation reduced and the palpability of individual muscles increased”.

www.favstocks.com/on-the-road-to-liberation/2037807/2/

[dania]

And here are 17 pages of posting that treatment DID NOT WORK for them.
Some patients saw no improvements and some had improvements but they did not last.
http://www.thisisms.com/ftopic-12342-da ... sc-15.html

[numbness23]

this is mindboggling! I am new to this CCSVI. Is this the norm?
http://www.youtube.com/watch?v=PafBQg84U0o

after
http://www.youtube.com/watch?v=g32XeDqhNQQ

absolutely exciting and incredible!

[numbness23]

And here are 17 pages of posting that treatment DID NOT WORK for them.
Some patients saw no improvements and some had improvements but they did not last.
http://www.thisisms.com/ftopic-12342-da ... sc-15.html

i understand your point totally i get it, but even if it helps a subset of people??

[fiddler]

The results are self-reported and perhaps skewed, but the best long-term (and getting longer) statistics on liberation treatment results are at http://www.ccsvi-tracking.com. Anecdotal stories are good for understanding the emotional impacts that improving or not improving after treatment have on people, but it's better to look at the numbers. Of the 440+ people reporting, some as many as 13 months, over 80% report an improved quality of life, and only about 6% have worsened.
...Ted

[dania]

And here are 17 pages of posting that treatment DID NOT WORK for them.
Some patients saw no improvements and some had improvements but they did not last.
http://www.thisisms.com/ftopic-12342-da ... sc-15.html

i understand your point totally i get it, but even if it helps a subset of people??

When I had it done for the first time June 2010, it was then reported that you either got improvements or not. It was even said that you may not improve but it will stop the progression. Nowhere did it say that having this procedure could result in your veins closing up more and becoming worse off.
People should be aware of that. There is a chance you could end up worse. There are so many that this has happened to.
I know how wonderful you feel when the veins are opened and the blood is flowing. It is fantastic.
Those that have it done once and do not restenose, develop blood clots or intimal hyperplasia are the very lucky ones.

[dania]

The results are self-reported an d perhaps skewed, but the best long-term (and getting longer0 statistics on liberation treatment results are at http://www.ccsvi-tracking.com. Anecdotal stories are good for understanding the emotional impacts that improving or not improving after treatment have on people, but it's better to look at the numbers. Of the 440+ people reporting, some as many as 13 months, over 80% report an improved quality of life, and only about 6% have worsened.
...Ted

Not everyone is on CCSVI-tracking. I am not.

[CenterOfGravity]

I, for one, am glad Cece started this thread to post media stories of people improving. Yes we all know not 100% of people improve, some restenose, and others have lingering problems. But I hope this thread isn't turned into a battleground. There is a thread for people who haven't improved, the link is posted on this thread already. We get the point.

First people complained that there were threads for every article, now this.

[blossom]

i agree with dania. although there was some info. on clots intimal hyperplasia etc. --at the forefront i and i think most at that time were seeing and hearing-it's a safe procedure-it's done all the time in other health problems yada yada. i did not dig deep into this because i was listening to the dr.'s and others saying how safe the procedure is. which the procedure itself is pretty safe BUT i don't recall hearing anything about clots, intimal hyperplasia, the scaring getting so bad your vein is done for and i have not heard yet how many times this can be done before our veins would be shot.

believe me i am not ccsvi bashing and i do not feel dania is. this is just facts. i hope they get this figured out somehow because there is something to it and for some it has been a miracle some got help some nothing and some worse off that are now living a double nightmare.

but, no one twisted my arm but since i am one of the ones that the only thing i came home with was a novicane numb leg and the worry am i restenosing-am i clotting am i scarring? and when can i quit being cncerned about this? so far they say i still have flow will i next doppler? i hope. but since the procedure i am worsening i feel quicker.

one real positive thing it has taken the way ms has been looked at to a whole different level. and there are some real good dr.'s trying hard to help us. but, it still will take the village.

until then i guess everyone will do what they do. at least there is a little more info. of good and bad available. just look real good before you leap.

[fiddler]

Dania, nobody has to belong to http://Www.ccsvi-tracking.com to see the results. All you have to do is click on the link. Some of the more detailed analysis requires you to be a member, but you don't have to be liberated or even have MS to join, as far as I can see.

I'm glad for people whose symptoms and/or progression are such that the slight risks involved are enough to make them hesitate. Besides the fact that these are personal decisions that must be made taking account of their own comfort zones, that leaves more spaces for those who, like me, don't feel that they can afford to wait.
...Ted

[Cece]

First people complained that there were threads for every article, now this.

Lol, I remember that! Thanks, Center.

I enjoy reading and posting these accounts. We don't see these in the newspapers here in the US. When they're lined up like this too, you start to see some of the commonalities in the reports. Two of the ones I posted today mentioned an increased appetite. I can relate to that. My appetite is changed for the better.

It's good to remember that improvements aren't guaranteed and that some percentage of us, maybe 6%, will worsen as a result of the procedure or as the natural course of MS or both combined. (Which I wish did not happen to anyone.) Still I think we can still enjoy the improvement reports while keeping the risks in mind.

Numbness, it's hard to say what is the norm yet, because so much of it is anecdotal, but I remember watching my first youtube CCSVI video ("I can jump!") and being blown away too.

[newlywed4ever]

Ahh, yes! My first ccsvi youtube was also the "I Can Jump" - I watched & shared that video a dozen times with tears each time. The hope it ignited! And, on the opposite end of the spectrum, worse case testimonials also bring the tears. Thank you to all those who came before me and all those who came after. All stories are equally important; we are learning!

[griff]

And here are 17 pages of posting that treatment DID NOT WORK for them.
Some patients saw no improvements and some had improvements but they did not last.
http://www.thisisms.com/ftopic-12342-da ... sc-15.html

i understand your point totally i get it, but even if it helps a subset of people??

When I had it done for the first time June 2010, it was then reported that you either got improvements or not. It was even said that you may not improve but it will stop the progression. Nowhere did it say that having this procedure could result in your veins closing up more and becoming worse off.
People should be aware of that. There is a chance you could end up worse. There are so many that this has happened to.
I know how wonderful you feel when the veins are opened and the blood is flowing. It is fantastic.
Those that have it done once and do not restenose, develop blood clots or intimal hyperplasia are the very lucky ones.

I agree with dania. First., they told us it is a safe procedure and the worse case scenario is your situation does not change. And there is the upside. This sounded really good.
Now, we find out that most of us get restenosed and many people's condition gets worse than it was before the operation. I am afraid that it is only the tip of the iceberg what we see here. Neurologists in the home countries of the patients talk about more serious cases. Even those who were enthusiastic about this procedure.

It is also interesting that talking to IRs not benefiting from CCSVI money have a much more balanced view on this procedure. I can also just refer to a well respected vascular surgeon whose hospital do CCSVI operations. He told us (and I can see he was reffered by others as well here on different threads) that he sees many of the neurologists concerns well founded and he sees risk in many of the currently used techniques, like using large balloon, breaking annulus, dilating veins unnecessary, etc.

It would be good to draw in other doctors into the process from different fields (IRs, vascular surgeons, neurologists). I still beleive that neurologists are key to this process, we need them.

It also makes me think why those IRs who were doing these procedures did not have any concerns about the problems we are facing today. The bottom line for any operation is to be safe, mainly when its long-term effect can not be determined yet.