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Well, John was doing great for about 6 weeks after angio and now seems to be regressing! He is walking worse than before the procedure and the headaches have returned.
John is going back for another procedure with Dr. Sclafani. Hopefully he can get this darn jugular opened and make it stay open! The first procedure was pretty aggressive with a large balloon too.
I do want to mention that John's fatigue is still GONE though! So, that is a good thing.
Any thoughts on why elastic recoil happens?

soapdiva884 wrote:Well, John was doing great for about 6 weeks after angio and now seems to be regressing! He is walking worse than before the procedure and the headaches have returned.
John is going back for another procedure with Dr. Sclafani. Hopefully he can get this darn jugular opened and make it stay open! The first procedure was pretty aggressive with a large balloon too.
I do want to mention that John's fatigue is still GONE though! So, that is a good thing.
Any thoughts on why elastic recoil happens?

I'm so sorry to hear this. Could it be a clot?

Is another venogram and whatever is required considered part of the original cost, or is this treated like a new procedure? Is John still on blood thinners and do they have to be discontinued before another procedure? Does the doctor go back in the same left hand side?

Was this John's first procedure?

Dr. Zamboni seems to have had greater success with subsequent procedures for those who re-stenosed, if that helps at all.

hope410 wrote:

soapdiva884 wrote:Well, John was doing great for about 6 weeks after angio and now seems to be regressing! He is walking worse than before the procedure and the headaches have returned.
John is going back for another procedure with Dr. Sclafani. Hopefully he can get this darn jugular opened and make it stay open! The first procedure was pretty aggressive with a large balloon too.
I do want to mention that John's fatigue is still GONE though! So, that is a good thing.
Any thoughts on why elastic recoil happens?

I'm so sorry to hear this. Could it be a clot?

Is another venogram and whatever is required considered part of the original cost, or is this treated like a new procedure? Is John still on blood thinners and do they have to be discontinued before another procedure? Does the doctor go back in the same left hand side?

Was this John's first procedure?

Dr. Zamboni seems to have had greater success with subsequent procedures for those who re-stenosed, if that helps at all.

Thank you so much. Anything after this is not part of the original cost. I believe we pay for it all over again. John did Arixtra for 20 days post proc. so no, he is not on blood thinners now. I honestly don't know if Dr. Sclafani will go in the left side again, I think so. Yes, this is John's first procedure for CCSVI. To be honest the words elastic recoil were mentioned to us, not restenosis. Maybe they are one in the same??? I don't really know. But, thank you for the concern.

Elastic recoil seems to be the most common type of restenosis in CCSVI.

Soapdiva, wishing you and John the best with the second procedure! I know it's been wondered if more than one procedure might successively weaken the stenosis so that the best outcome is after repeated procedures. I hope it gets open and stays open! I wish it had stayed open from the get-go.

It's still odd that he had only one CCSVI malformation in one jugular, when most of us have CCSVI in more than one place. So here is hoping that something that was hidden last time will be really obvious this time around and it will get fixed as well. Let us know when his procedure date is so we know when to direct our thoughts and prayers, ok?

CeCe, thank you so much for the kind words. No date yet, we have sold our house and are moving into a new one. So, we are extremely busy. Which, does not help the MS at all!
When I find out the date, I will definately let you know. I too am surprised there was issues in one jugular only. But, there was a question of the other jugular. But, Dr. S did not do anything because of the uncertainty. Hopefully as you said there will be more issues that can be taken care of this time around.
Thank you again for the kind thoughts and words.

Did Dr. Sclafani have the IVUS up and running when your bf was there?

Best wishes with that move!! That is a lot of stress and busy!