This Is MS Multiple Sclerosis Knowledge & Support Community

Our (Loobie and Arcee) times at Stanford this past summer overlapped, and we found that experience helpful, so we decided to extend the excellent adventure to SWI Central in Detroit. And now we share our learning from the new experience with you: - Our visit was not part of the CCSVI study that so m...

MRIs are not a problem with stents. We all have had them in our follow up exams. In fact, Lew and I are going for some more of the strong ones on Wednesday when we do them with Dr. Haacke.

And also, all the ways this is presenting - - missing jugular, corkscrew jugular, double valve, etc. - - is like venous candy to these folks. The curious professionals will want to know more. We've gotten some promising responses to our North Eastt outreach efforts. And now it sounds like Duke as we...

Unless we have more trials, his statement is not out of line at all where he says: "this is a procedure that cannot be defended, supported or recommended on risk-benefit considerations at this time." Besides the whole tone issue as noted by Rokkit, this is actually the part that got to me...

Zap, glad you got some useful information.

And my thoughts go out to those whose plans got changed. Unbelievably frustrating day. But it sounds like more options will be coming, and I hope the wait is short.

Two other things that came to mind when I read this thread: - The Buffalo study design not only addresses the concerns expressed about previous study design, but in their press release from Buffalo earlier this fall, the top officials from the University hospital made a comparison to ulcer research....

If you read the posts, most (if not all) who had surgery are pretty cautious as far as promoting people to get the treatment. Marie wrote a really good post on this recently, saying that for people early in the disease, the optimal surgery is years away. I just want to point out that what most of u...

A couple of us, post-stenters, will be getting tested in a couple of weeks and we specifically asked about spinal testing. They said they have not focused on it but have no problem doing it.

Some people will wait, some people won't. We didn't and are glad we didn't but for others the procedure was nowhere near as straight forward. Same with all MS treatments though, none are without risk. Doing nothing is a risk in itself. There's no right answer. Jamie really captures my thoughts and ...

And you ask the medical professional who is treating you...

I agree that issues with our veins and circulation could well extend beyond the jugulars and azygous. I truly feel benefits from the stenting, e.g. increased stamina, but it's also true that it hasn't changed everything, e.g. my hands and feet still get cold at times. Then again, many of my friends'...

Mark, good points. And my two cents: I received a lot of aftercare instructions in writing and verbally. Not sure if it is because I asked questions or not, but, for example, I got a demo about how not to move my neck (temporarily), how not to lift things for awhile, lots of conversations about Coum...

And two of us Stent-o-teers will be heading to see Dr. Haacke in a couple of weeks. We'll be interesting data points for him, kind of like before and afters. We'll post more about it after we have experienced it.

Kacey, you may very well have thought of this, but when I read your post and saw about the "rage" and "steroids" I immediately thought of the reports about the athletes who had rage and personality changes associated with steroid use. I do not know if the kind or amount of steroi...

Phil, safe and easy travels home for you. How great will that feel to be back home Hoping for continued improvement for you.