EDIT--This note was written almost 2 years ago.  Since then, I've helped write up an aftercare suggestions page for CCSVI Alliance, which can be accessed here  It has also been suggested that pwMS considering venoplasty try to make these lifestyle/diet/exercise modifications before being treated, if at all possible.

Hi all--

Just some thoughts...because I care.

I think there is a disconnect happening in the MS community approaching CCSVI treatment, and it's worrisome. There is a sense that someone can be treated with venoplasty for CCSVI, come home, and be done with their problem. This couldn't be further from the truth--and I just want to put out another warning.

I've written about Jeff's multiple visits to Stanford for follow-up (three times, now) as well as his working with his GP and neurologist to keep tabs on his blood numbers and other symptoms. There is a need for patients to stay local and work with doctors in their area, which I sadly realize is just not possible for all. But it goes beyond this...

Patients need to look at lifestyle, medical regimen, diet and exercise-- as if they were recovering heart attack or stroke patients. Just as a heart patient is sent home after angioplasty and stenting with a new low fat diet, exercise regimen, blood thinning regimen and program for healthy living, CCSVI patients have to consider the same factors. Heart patients have ongoing relationships with their cardiovascular doctors--it should be the same with CCSVI.

We've seen patients' blood numbers return to hypercoagulated states after they decide to discontinue blood thinning regimens on their own. Patients have no access to medical follow-up after returning home, no blood monitoring or after care. And this scares me.

Please--if you are traveling to another country, at the very least have a relationship with a local doctor BEFORE you leave. Someone who can check your blood numbers (INR and PT testing-which measure coagulation), listen to your heart, monitor blood pressure and your veins, watch your rehabilitation and look out for complications (like clotting). It can be another vascular doctor, your GP or your neurologist. But make sure you have this in place before you go anywhere. And if you can stay close to home, PLEASE try to do this first.

So much has happened in the year since Jeff's first procedure. He has stayed on his supplements, exercise and lifestyle program, he is keeping those veins flowing, but it hasn't been a breeze....this isn't a one time deal. It is a lifetime commitment to a new vascular reality. OK?

More than anything, I pray for treatment for all MS patients suffering with CCSVI....but I want you all to have follow-up care, too.

Joan

http://www.facebook.com/notes/ccsvi-in-multiple-sclerosis/ccsvi-treatment-a-lifetime-commitment/400204157210