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I have had 5 procedures. With the first I got great improvements. With the last 3, the doctors were unable to do anything due to scarring. All 3 veins are now 100% blocked. My only hope is a vein bypass. I am looking for a doctor who can perform this surgery. I saw that a doctor in Italy did this with great results. Patient was in a wheelchair before surgery and was walking without walker or cane afterwards.

Hi Dania,
I am so sorry to hear of your terrible situation.
What happens when the veins are scarred? Does that mean they won't open?
Have you got blood clots?

Are you on blood thinners still?

I hope you feel better soon x

I was thinking about this issue today as well. Dania, I read the same piece on the italian doc that helped the man in the wheelchair. I think that's what I am looking to do in the future too. My RIJV is unable to be opened. After my first procedure I too was feeling wonderfully. Living in Canada is a problem to say the least. How long is this going to take to reach us?

WinnipegGirl_83 wrote:I was thinking about this issue today as well. Dania, I read the same piece on the italian doc that helped the man in the wheelchair. I think that's what I am looking to do in the future too. My RIJV is unable to be opened. After my first procedure I too was feeling wonderfully. Living in Canada is a problem to say the least. How long is this going to take to reach us?

There must be many like us that angioplasty does not work. All I know is that when the veins remain open I felt wonderful.

Can someone post the article on the Italian doctor who performed the vein bypass? Anyone know his name? Where in Italy?

zinamaria wrote:Can someone post the article on the Italian doctor who performed the vein bypass? Anyone know his name? Where in Italy?

http://www.thisisms.com/ftopict-15645.html

Discussions like these put unfounded uncertainty into the minds of readers. Statements like "there must be many of us that angioplasty does not work" are maybe OK for casual conversation, but scare people who should not be scared. Maybe some people who have had too many failed angioplasties should be discussing vein bypasses, but I think this is not necessary for most. Just as I have had coronary stents but no vessels harvested to fix my heart, I think it is only in extremis that that should even be considered for CCSVI.

Thanks Dania, how did I miss that thread?? Very exciting, I think. I wonder if this doctor has had contact with Zamboni (can't imagine him not, but does anyone know?) Nunzio?

zinamaria wrote:Thanks Dania, how did I miss that thread?? Very exciting, I think. I wonder if this doctor has had contact with Zamboni (can't imagine him not, but does anyone know?) Nunzio?

I sent that doctor an email. I do not know if he will respond but nothing ventured nothing gained.

Dania,

I meant to say that I am so sorry that you have had 5 treatments and yet no improvements felt and that now you are sort of stuck, to put it mildly. I really do wish for you some relief, do not despair, in other words, hang in there.

Zina

1eye wrote:Discussions like these put unfounded uncertainty into the minds of readers. Statements like "there must be many of us that angioplasty does not work" are maybe OK for casual conversation, but scare people who should not be scared. Maybe some people who have had too many failed angioplasties should be discussing vein bypasses, but I think this is not necessary for most. Just as I have had coronary stents but no vessels harvested to fix my heart, I think it is only in extremis that that should even be considered for CCSVI.

I am not trying to scare anybody. I am looking for someone to help me. I am just pointing out that for those of us whose veins close up after angioplasty (Zamboni did say about 45% restenose) this surgery gives us hope. I have been in touch with quite a few that have restenosed after multiple procedures and their doctor told them there is nothing he can do. And some who are actually missing veins.
People are not so quick to post a negative experience.

Can someone explain to me what this entails?

I know the jugular veins are semi-superficial ... so they should be easy to access.

I assume then the Dr. finds where there's a good point in the jugular vein ... and splices in the new vein, and then ties it into the brachocephalic (innominate) vein at the bottom?

It's obviously an invasive surgery, but semi-superficial ....

Anyone have more detail than I provided?

CCSVIhusband wrote:Can someone explain to me what this entails?

I know the jugular veins are semi-superficial ... so they should be easy to access.

I assume then the Dr. finds where there's a good point in the jugular vein ... and splices in the new vein, and then ties it into the brachocephalic (innominate) vein at the bottom?

It's obviously an invasive surgery, but semi-superficial ....

Anyone have more detail than I provided?

Not sure what this entails but here on the second page is a diagram.
http://www.thebarrow.org/Education_And_ ... rly/204853

1eye wrote:...I think it is only in extremis that that should even be considered for CCSVI.

I agree with this, in extemis, definitely.

I see too that Dania is looking for help, not to scare, as she said, and that her situation is extreme. I worry about the hypercoaguability in Dania's case and how a doctor will control for that.

Here is the diagram that Dania pointed to, thank you for the link, I'd seen that before but wasn't sure where it was:


You do not want the transverse sinus getting blocked with a clot or scarring. This is up at the base of the brain, above the access to collaterals.

CCSVIhusband wrote:Can someone explain to me what this entails?

I know the jugular veins are semi-superficial ... so they should be easy to access.

I assume then the Dr. finds where there's a good point in the jugular vein ... and splices in the new vein, and then ties it into the brachocephalic (innominate) vein at the bottom?

It's obviously an invasive surgery, but semi-superficial ....

Anyone have more detail than I provided?

For those of you that really want to know here it is

So the diagram Cece and Dania mentioned is not accurate and was taken from a published paper for another reason.
He just replace the Jugular vein where the problem is , as you can see from the pictures, without creating a bypass from the sigmoid sinus.
I think this is from the second procedure he did.