[Dejibo]

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.

[clarkstar]

Originally Posted by Dejibo

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..

thats very interesting!

will keep your friend in my thoughts

[EddieF]

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

[Dejibo]

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.

[SallyC]

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.

[Kitty]

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.

[Dejibo]

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.

[Dejibo]

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.

[EddieF]

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!

[SallyC]

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.