Dr. Zamboni-CCSVI is "difficult to treat"

[magoo]

Although it's in keeping with what they've said we've recently heard from cheerleader about her husband's experience and magoo about her personal experience and it should also be noted that they've both been re-treated. It's not within my authority or intent to try to pose that as a damning statement towards the future of ccsvi treatment but it should be noted that even those oft raised examples do nothing to dispel suspicions that eventually every person treated will experience re-stenosis.

I just wanted to be clear that my 2nd treatment was not due to restenosis, but to better evaluation and discovery of "missed" blockages. The stents Dr. Dake put into both jugulars were perfect. Now, the angio performed on the newly discovered areas may need to be retreated in the future...but, maybe not. The info is not in and we can speculate about restenosis all day. I don't think the webs will need to be retreated once they have been destroyed.

[cheerleader]

Hey folks, been a while...needed a break from everything.

I think what Cheer is saying is not to be discounted or taken lightly. Unfortunately, Courtney has not had any lasting improvements from her procedure in Brooklyn, and in the last couple of weeks seems to have progressed more.

We had one of the best Dr's out there treat her CCSVI; however, because we have no local follow up options with Drs who are taking the currently accepted testing methodologies seriously we are in a state of limbo unless we can find the money to travel out of state everytime we need a followup. I believe she restenosed shortly after her procedure but without good local follow-up and testing we're right back where we were to start with, and we've spent a lot of money in the process.

We have had local followup with well respected IRs since her treatment in May, she's had two ultrasounds and the Dr says her veins are fine. Neither follow-up was done with a true protocol, and because the doctor is skeptical they aren't going to invest their dollars getting staff trained to test and treat something that he says is still up in the air. This is a sentiment we've run into many times.

If you have the means to make multiple out of state trips, can pay out of pocket for multiple treatments by all means push forward, but if you're struggling financially you may want to be more cautious.

We're planning on moving in the next 1-2 years, and will be making our top criteria a location with good CCSVI treatment and care options.

Best of Luck to you all,
John and Courtney

Hey John--
I'm really sorry to read this. I know Courtney is the world to you...and you were hoping for more help for her disease progression. And I understand the needing a break from all of this. The Hubbard Foundation is looking at all sorts of complimentary treatment modalities to go along with venoplasty. Check in on their blog now and then. Lost of good stuff. http://www.hubbardfoundation.blogspot.com/

I had really hoped this was going to be easier, and I'm sorry it's not for so many. That's why I'm still on here, even though Jeff is doing well. And he wants me to keep working, traveling, speaking and asking for research and more understanding of these venous malformations. Why there is restensosis, why certain types of MS respond better, why certain symptoms are alleviated more than others, whether of not this is halting disease progression in the long run, and how to move forward.

I think the Cleveland Clinic findings of venous malformations in autopsied jugular veins of pwMS is huge. With IVUS, we're finally coming to understand the implication of these defects. But as you've written and Dr. Zamboni has said, we're not there on a "turn key" procedure that can guarantee success for all.
Don't be a stranger on here---
cheer

[Cece]

Really sorry to hear that, Johnnymac. I watched all the videos last May and it hurts to know that it's been lost.

We're planning on moving in the next 1-2 years, and will be making our top criteria a location with good CCSVI treatment and care options.

Seems smart.
I got lucky when Dr. Cumming took this up here in Minneapolis. An IVUS site too.

[HappyPoet]

bump

[Cece]

Even the debate over high pressure balloons falls under the category of CCSVI being difficult to treat. Do high pressure balloons lead to a loss of lumen? Or is it impossible to sufficiently stretch the valves open without the use of high pressure balloons?

[CureOrBust]

Although I do not want to hold someone to something they said in the excitement of a great moment, which I think may have had a part when presenting possibly their life lifes proudest achievement, the following editorial comment has stuck in my mind, and has made me wonder if he knows something all the other great people we have working on this do not?
http://www.thisisms.com/forum/chronic-c ... c8074.html

Dr. Fabrizio Salvi- Head neurologist at the University of Bologna spoke of his clinical observations as a neuruologist working with the CCSVI paradigm for three years. He told us that in 500MS patients he has tested now, 100% have CCSVI. He stated the doppler is a wonderful tool of diagnosis and their needs to be training in the technique. He has a hypothesis as to why there are different varieties of screening in high risk subjects- because prognosis is related to the type of malformation. He wants to answer the question if the Liberation procedure is a disease modifying treatment in MS. He will give proof tomorrow that there is plasticity and remyelination in the CNS and the Liberation procedure have proven to activate remyelination in the CNS as shown by MRI.

“Yes!!!” stated Dr. Salvi...”no one is lost!!” (editorial comment....his face lit up as he spoke these words.)

If it was slightly over asserted, I applaud the fact he loves his work and would get such excitement for being able to help us.

[MrSuccess]

yes ... I remember that statement as well. Dr.Salvi has quietly worked along side of Dr.Zamboni. With little fanfare.

As we know .... the original Zamboni 65 ..... were Italian MS patients . [ some from Buffalo ..." Wobbly " ?? ] .

I am certain Dr.Salvi would have been responsible for introducing these couragous pwMS to Dr.Zamboni and his prospective ground breaking study.

Many the time , I have read skeptics repeat the false [ and stupid ] idea that Dr.Zamboni just walked down the street , picking people at random .......... and then claimed ALL of his patients tested .... had CCSVI .

Duh .

I salute Dr.Silvi ..... a couragous NEUROLOGIST. Without his wonderful support ..... the CCSVI story .......... would have taken years to advance.

Salute


Mr.Success