I think there is a disconnect happening in the MS community receiving CCSVI treatment, and it's worrisome. There is a sense that someone can be treated with angioplasty/stenting, 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 on here 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. But it goes beyond this...
Patients need to look at lifestyle, medical regimen, diet and exercise--just 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.
We've seen patients blood numbers return to hypercoaguted 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 least have a relationship with a doctor BEFORE you leave. Someone who can check your blood numbers, listen to your heart, watch your rehabilitation, look for complications. 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 and lifestyle program, is trying to keep 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?
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09