CataCyr4 going back to RE do CCSVI
 

Another one in my circle is going back to RE do the CCSVI stenosis clearing surgery after relapsing.

I promised to share when I found honest videos that show folks that are past their initial CCSVI surgery video and I found this one. She is clearly struggling, and is willing to go back and have this RE done as many times as it takes.

http://www.youtube.com/watch?v=veY4e...&feature=share

I dont wish to cast shadows on anyone elses journey but they are now saying that MS Causes CCSVI not the other way around, and this explains why so many are having to REDO their surgery. Those in Canada are coming to NY and other places and are paying CASH to keep having this proceedure. Its not cheap by any means, its like $10,000 and that doesnt include the hotel room, and travel expenses.

Very nice girl. I want you all to give her warm thoughts for her return trip.

thats very interesting!

will keep your friend in my thoughts :grouphug:

"best 6 months out of the past 8 years" is what she said stuck in my head and hopefully everyone else's

it must have been an amazing relief for all of these folks to search it out to have it done again. To go from extreme cog fog, and dragging a leg to up and running and talking to your children again...placebo or not, I can completely understand why so many want it.

I was complaining because its so hard to find folks with honest videos past 6 months out from their treatment. Many are very active verbally, but when you find out they are having it redone, and didnt want to show folks it upsets me. THIS girl is right out there! I love it! Some I spoke to told me they didnt want to show they had a relapse past 6 months because they wanted so badly for everyone to go get tested for CCSVI and seeing someone relapse would only scare them away. That upset me. Skewing the facts in either direction would upset me.

I say Rock on Cat! I hope it is ten times better for you this time than it was last time. :hug:

I think the reason for the absence of more uptodate videos, is deniel. We MSers are so good at that, ya know.:) And, maybe they're embarrassed, because of how they bragged, in their first video?

CV is not turning out to be the cureall that many expected, but does give some relief for MS sx. Many are having to do it over to get the effects they may have had at first and others get no relief at all.

I feel bad that so many are having to do the angio over again, but I just hope they don't go ahead and get stents, quite yet.:eek:

I'm with Sally. I think the ones that were first to have it done kind of jumped the gun and announced they were cured when it was just a remission of symptoms. I feel bad for them because I know how much they wanted this to be "the cure". I truly believe that, for some, it will be the most dramatic improvement they'll see but for everyone with MS it's not the cure we all hoped for.

There were several on my facebook page that became down right aggressive when I told them that I did not want the angio. That I have insurance, so it wouldnt cost me anything, and I live close to NY so its not a long trip. I got BLASTED! how dare I not do this! I OWED it to the whole group of MS folks that are pioneers in this field. reallY?! I owe it?? really?? I found myself defending my position of wait and see. I also UNfriended a boat load of folks from canada that were trying to force the government to pay for this treatment before we really knew anything about it.

I am thrilled that some have found relief, but like Sal says, its not the cure all, that many had hoped for. Im a newbie at this whole MS finds a new cure thing, and I am not sure how you old timers to MS do it. Each year someone releases some new potent treatment or peice of information that is going to fix all that ails you. From Vitamin waters to Tysabri. the rollercoaster is exhausting.

btw here is her post follow up 2 weeks after the redo.

http://www.youtube.com/watch?v=lumoy...el_video_title

She is quite upset at Canada for not funding this treatment, but I promised to show you honest updates when I could find them.

I am TERRIFIED by what they did to her, but WOW how brave. They ripped open the vein and hope that the flap will heal in an open position??? I dunno. I just dont have the stones to do it. God Bless her.

Awesome! I keep forgetting about VALVES! I see a Dr next month who carries some weight in the medical field & look forward to it.
I had told him MRV last yr then many said it can lead to false pos/neg whatever however, I LOVE making 3D models (such as my avitar) from MR's and would be estatic looking at my plumbing! :) I'll get one within the next few months count on it.

Hey how about people don't post many follow-up videos cause they're no longer staring at a pc screen all day, instead out enjoying life?? I agree & would love to see updates every say 2 months. I have a list of pre/post utube ccsvi vid's (which i've posted here last yr) & these will surely go to the top. Thanks.

edit - 400th post & i'm glad it's CCSVI!

Wow Dej, she sure is a positive spokesperson for CV and I am so happy for her. I hope Canada does come thru and help with the cost of this for her and others.

I don't do videos. Pre, Post or anything. Also, I don't like to brag, or try to convince people to try something, just because I did. I am only 5 months out from having the CCSVI procedure. I am a pioneer and proud of it. :hug:

I try what I feel I want to try, and I take meds that I want to try too. :) It's my choice. Everyone has the right to their own choice.

I am doing very well, and very happy about it too. Much better than pre procedure, but nothing is ever written in stone. Nothing comes with a guarantee.

Some people pioneered in drug trials, like the CRABS or the Tysabri people, or even the new drugs out today. It's their choice. Some pay a lot of money to take these drugs and they have ins. It's up to them. They don't know what the future holds for them anymore than I do.

We can just do what we deem correct for our mind and bodies and pray. That's what life really is all about.

If you belong to a Facebook group that makes videos, then I guess you want to be out there making videos too. I'm glad people want to do that for themselves and others. It's just not my thing. :)

Thanks for sharing Dej. She was a honest woman. I wonder how many people lie, or never really had it done and say they did? I wonder how many naysayers do video's? We really can't tell can we? Just like people who criticize a drug because they want you to try another. Some people may be advertising a CCSVI facility or a drug and be a normal person, we don't know.

Reading real studies and reports, watching drs video's, and doing your homework on anything you want to try, is the best way to go. JMO

For the record, the only reason I haven't posted a follow up video is because I wasn't the one who posted my first video (and 'cause I don't have a web cam :) ) . It was done by another organization and I found out it was going to happen literally as I was going in for my ultrasound in Bulgaria. Just to play devil's advocate - couldn't even someone who had totally regressed hold it together enough to make a happy smiley follow up video if they were so inclined?? Short of making people do neuro scoring on the video what does someone sitting there talking really truly prove? Just sayin'...

And no, I haven't had a relapse and hid it. I do still have MS issues and bad days, just not near as bad as before.

I do agree that some of my fellow Canadians are getting too aggressive over the issue. However, I am also p!ssed that I had to travel overseas and pay thousands of dollars for something that could have been done here for $2,000 and I could have slept in my own bed that same night. Yeah, this doesn't provide relief for everyone, but pretty much NOTHING in medicine works for everyone. As a Canadian I'm not even asking the government to pay for our treatment here. Just let us have it here and we'll even foot the bill. I could get a totally medically unnecessary tummy tuck here but they will professionally censure an IR that treats my screwed up jugular vein??

I would never hector someone for opting not to have the procedure though. It was a good decision for me, but I'm not going to force it on someone else.

Thanks so much Lady and Jacksonsmommy:hug::hug:

I know this has exploded in Canada and many are spending upwards of 20k to go get this done. There are fundraisers in every corner for others to get this done. As you saw in this girls video she sets aside money because she knows she will have to have that stent cleaned out, as she expects the symptoms to return. They feel themselves to be pioneers in medicine and that this simply must be the next best thing to the Polio vaccine. Very excited and very vocal about it.

I had not thought of anyone lying that they had the proceedure, but have heard of a young man that was cut out of several circles because he went to Poland to have the PRE test done, but never followed thru with the real thing, even tho he was blogging about the whole experience. They circled around him and told him off because they felt him wrong for making a blog about his own experience. In the end he couldnt raise the money, and hoped his blog would help him do that.

All I know is I am searching for folks who have honest videos about what is happening. Even if that means redoing it, or relapses, or a huge full recovery and they came in from skipping rope to say "look at me!" one year later. I know that the aggressive ones are NOT out skipping rope and playing outside, they are sitting at their keyboard pushing the Canadian government to fix their system to include this, and sending out massive emails to folks like me who are not ready to try.

To those that have done this, I salute you! You have bravery that I cannot find. You have strength that I cannot find in my own pocket. I have no road blocks preventing me from going to get this other than myself. I am a chicken till I get MUCH more facts. So far this is shaking out to be a lot less than advertised. I will post another honest one when I find it. The needle in the haystack.

Hi! I am sorry you were treated like that on FB. I myself have had a bit of the "Canadian backlash", though not quite as bad. Having followed this from the start, my sense was that many, though certainly not all Canadians, were tossing the baby out with the bathwater. Anyways, this seems like a great group. Keep supporting each other and as far as the follow up vids go, it is true, some of us with stellar results, just haven't the time! :) Although the pre-post video stuff to me is okay, that stuff came around well after I was treated, so there was no thought to make a pre-video, but my post video celebrating my 1 year anniversary is in the works, if I ever get some free time! I am coming up on 2 years anniversary in a few months, and the past two years (no DMDs) have been nothing short of phenomenal. There just seems to be no upper limit on what I can do in a day.

Vs. before, where it was a day to day survival and begging for nighttime so I could just sleep and forget it all.


Anyways, I wish you all the best, and keep in mind that the internet only represents a small portion of what is out there.

Have a great day.

Dej I just remembered - you're the one affraid of MRI's! :)

I think CCSVI, valves, veins what have you is awesome finding & can't wait till FDA pulls it's head out it's bleepin bleep bleep :)

Edit - See, the U.S. is too rich for that right now. It's easier to just pay thirty six thousand dollars - that's $36,000 per yr per MS patient :)

not only am I afraid of MRIs I have a stomach issue that it backwashes when I lay flat, a broken back so its painful to lay flat for a half hour, even with the pillow under my legs, and I am so nervous! The last MRI they actually intubated me to prevent me from aspiration because of my gastro issues. so...yeah, I HATE MRIs!

I am so proud of so many that have bravely marched where I am afraid to go. I simply wanted more answers before I rolled up my pant leg for access to my veins. I am happy to be seeing more and more videos, good and bad.

For some time I've been noticing that posts on sites that are strongly in favor of CCSVI are sounding a bit shrill.

I've had the feeling that the attitude is: "If you're not 100% for us, then you're against us."

That really isn't so good. Many people are waiting and thinking about it. And why shouldn't some decide that CCSVI isn't for them?

I am a little unfamiliar with this, but I gather it is a process to open closed artery in neck?
Mine are very open. I have had more than one test on it, to ascertain this, due to having another disease which involves the possibility of clots. I believe mine are open because I have followed the Swank diet for a quarter of a century, and even before that could not digest saturated fat well. Now this is a bold statement, and possibly there is another reason for my clear arteries, like heredity? We are certainly a result of both heredity and nurture. I have been on a low fat diet all my life due to my mother's predelictions in that direction, and got my first big sickness 3 weeks after starting a high fat college dorm diet.

Dr. Swank thought that MS was an auto-immune attack on fat in the body, including myelin, which is made of lipids. Could this be related? He wanted the dietary fat very low to keep the attacks low. However, he realized that more was involved, and he thought that something is missing in the blood of people with MS. He was trying transfusions of healthy blood to help some of his patients, and there were many successes--people getting out of wheelchairs and wearing high heels reported. But this
was a temporary thing, too. It would last five months and then another transfusion would be required. I did not try it because I lived l50 miles from him, and I had only one likely blood donor, my husband, and at that point both of us were not well and harried and not up to taking the trip to Portland, staying in a motel while doing this, etc. We just felt it was too much for us to undertake. Swank insisted on using family blood to ensure it was not tainted. My son was away at college and would not have likely come to donate. He thought all these things were nonsense anyway. He didn't believe I was sick
except in my mind. So I never did this procedure, although I feel it was very likely to have made a difference.

Dr. Swank's ideas were wonderful, and he was a very great man. He lived into his late 90's by following his own diet, even though men in his family generally died early of heart disease. My porphyria doctor was at the same institution, and he said the Swank diet was excellent for porphyria too. I see no reason to tamper with success. I'm old and sick now, from new diseases of the blood, but I had years of improvement on the Swank diet. I would get flares if I went off it even for a couple of days.

I do eat more eggs than are recommended, but otherwise I am totally Swanked.

I totally agree that diet plays a big part. I think anybody with any ailment could benefit from a cleaner diet.

My diet is pretty clean now. Chocolate chip cookies is the only thing that dirties up my diet and unless I find out that CCC causes MS, I aint changing it..:D