Johnnymac wrote: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
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---