Welcome to TIM’s. It’s my guess you’ve been here at TIM’s for awhile reading and educating yourself or you wouldn’t have asked such great questions.
I’m neither a CCSVI Heretic nor a CCSVI Tambourine Banger I’m just a MS sufferer looking for answers, as I believe most TIM’s members are.
I’m not scheduled with Sclafani, Simka or Dake because I’m still on the sidelines watching the scrimmages. I believe we are still somewhere in the first quarter, with a couple of injured players.
I personally want to hear ANYTHING folks who have had the “Liberation Procedure” are willing to tell us. And I do mean, “the Good, the Bad and the Ugly.” I want to be as informed as possible.
How else does one make a somewhat INTELLIGENT decision.
I had thought all along that this was a “relatively safe procedure” for any seasoned IR to perform, and with an experienced CCSVI trained IR almost a “miracle procedure” but obviously it is not without some risks we didn’t anticipate.
I’m still confused as to exactly what is going on with Rici, 1 have difficulty understanding him as well as reading & comprehending what exactly it is that Dr. Schnelling is warning us about, but it’s damned scary! I believe it’s something about a vein that became larger and a jugular valve that needs replacing after his procedure??
Then there is at least one more I read that said they had a vein enlarge also after treatment? There are coumadin scares with some folks, re-stenosing in others, blocked stents, migrating stents, collapsing stents and other problems with valves after the procedure. There were folks with painful nerve damage in their shoulders for months after the procedure and some folks are now having a worsening of symptoms. Is it illogical for individuals to have questions? Does having questions and not just blindly “believing” in CCSVI make a person a “spy”? Is it suspicious for folks to want to know more about what others have personally experienced? Is it so suspicious to want to know how people feel about the surgeon ahead of time? Dr. Sclafani may be close to having his IRB approval, and if he has a great track record with his first few CCSVI patients that’s awesome news. But if those folks have had any negative experiences, I’d like to hear about them. Even if it’s only about the frustrations of coming from a small town into a big city! People have given very detailed descriptions of Poland and al the folks they met and interacted with there, so why not hear more about Brooklyn?
And yes, I to want to know about aftercare. The folks who have to go so far from home for treatment are basically “free falling” at home without a safety net when they get back unless they are fortunate enough to be coming back to a supportive physician. But that doesn’t seem to be the majority of cases here. So I’d be interested to know if Dr. Sclafani, Simka or Dake do follow up calls to CCSVI patients wouldn’t you?
I’m afraid I’m one of those folks who doesn’t even have a good physician here at home that I can talk to about MS. I don’t know squat, but I know more than my neurologist!!!!!!!!!!!!!!! I know I’d be on my own once I got home, and it’s scary as hell. MS is such a weird disease, right now I have things going on that I’m not sure if it’s MS or not and I don’t know who to ask, my neurologist or my GP. And I really don’t anticipate any real answers to my questions from them. What I’d get is either a battery of expensive “tests” or a prescription for some expensive drug.
Thank goodness there are a few members willing to come forward here and say their experience and outcome has not been quite what they expected.
I thank those “out-of-wait time” for being our pioneers and putting their bodies and hopes on the line for us and I follow their posts with great interest.
I’m sorry I’m just not convinced yet to undergo the procedure with ANY of our doctors and I can understand someone having questions about other people’s personal experiences with any of the IR’s that we are aware of here at TIM’s and asking questions. I’m personally not the “jumping of the edge of a cliff” kind of person. I guess I’m a “wait for the trial results” kind of individual. I want Dr. Zamboni’s research, research, research appeal to come become a reality.
BlueJeans, here are your questions again. I just don’t get why some folks got so riled up. I’d sure like them answered. And I’m with concerned, who said, “The Tracking thread is long and content wise not very encouraging.”
1) How long it's been since your angioplasty
2) What the findings were
3) If you have improved or not and by how much
4) If you have had any untoward effects as a result (I had to look up “untoward” in the Thesaurus maybe the use of an unfamiliar word to some made you a subject of suspicion, bluejeans. Because I think these are great questions.)
5) What your follow-up has been or what is planned for follow-up.