This Is MS Multiple Sclerosis Knowledge & Support Community

Hello,
I hope to be on Dr. Sclafani's list once he has an IRB and begins to treat patients with CCSVI again. In preparation for the anticipated event I would like to hear from those of you who have had his procedure. Undergoing something like this is a big step and I wonder if you would share the following with me via a PM: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 5) What your follow-up has been or what is planned for follow-up.
Bluejeans

Could this be a suspicious post considering Dr. Sclafani's IRB date is coming up?

Not to get into the conspiracy things ... I hope bluejeans is legit ... I just wonder if it's the best time to be answering all those questions.

All of this information can be found in the Results Sticky thread at the top of the forum page.

mshusband wrote:Could this be a suspicious post considering Dr. Sclafani's IRB date is coming up?

Not to get into the conspiracy things ... I hope bluejeans is legit ... I just wonder if it's the best time to be answering all those questions.

yeah, just go into things blindly, that's better.

It's not about going into it blindly ... he/she can read all the tracking threads they want.

It COULD be someone looking for dirt though ... and could use it against Dr. Sclafani ... again COULD.

Nobody wants that when he's only days from potentially being able to perform this procedure again.

Ditto............... sorry bluejeans xxx

Although Im sure bluejeans would understand our concerns however.
Bluejeans read Dr S thread this would give you the assurance of the very good Dr’s capabilities and of his knowledge of CCSVI.

How very lucky you are I would love to get on his listings that for me would be the jackpot he has a conscience and the biggest itch (ccsvi) to scratch he is one of best men for the job.

Goodluck
Silvirbirch

I did not anticipate a suspicious response. Aren't these questions we should all ask before undergoing any invasive procedure for any health problem? We should look into side effects of all treatments including meds. Well, at least I always do.

Bluejeans ... it's nothing personal. Dr. Sclafani is a huge asset to this website and moving CCSVI forward.

His IRB approval is potentially only a few days away ... which is a HUGE thing.

Maybe we'll feel comfortable answering those questions after that date (once he's approved).

Until then we KNOW there are people out there like Colin Rose and Dr. Freedman who are against CCSVI for numerous reasons.

The fact that you just registered to this website and we know nothing about you (anyone can create a user name don't forget) ... makes people suspicious when you start asking direct questions like that about a doctor on our "side". I suggest you just read through as much of this website as you can ... you'll probably find your answers there anyway other than asking people for specific information.

Also you say you hope to get on Dr. Sclafani's list ... that's quite a long list at this point ... we'd be suspicious (as you put it) to know how you know of him but aren't yet on his list?

We just want Dr. Sclafani to get back to plumbing ...

Everyone who says they hope to get on his list...have you emailed ccsviliberation@gmail.com and asked to be placed on his list? Holly Barr is the contact person. I have not heard that they've stopped adding to the list. It is long but he says it does not contain all 500,000 US MS patients just yet.

He is also looking to partner with more neurologists, which would enable him to increase the number of venoplasties he could do each week, which means the end of list might not be as far away as it first appears. It is the need for a neurologist's pre- and post- examination that limits the numbers. (Anyone know of a CCSVI-interested neurologist in NY/Brooklyn? To pass his name to Dr. S or Dr. S's name to him? Just a thought. We all know lots of neurologists, here...mine is decidedly not interested, nor anywhere near NY.)

Bluejeans, there are some blogs around that describe some people's experience with Dr. Sclafani. Wheelchair Kamikaze and enjoyingtheride.com come to mind. (I hope it is okay to share this, there is nothing untoward within the blogs or really in anyone's experiences with Dr. Sclafani that I can think of...but I understand the caution.)

Bluejeans,

Why don't you google Dr. Sclafani? You will gain quite a bit of info on what he's done in the past 35 years. And follow the advice of the other posters - check the tracking threads and blogs mentioned.

The Tracking thread is long and content wise not very encouraging.

Hi BlueJeans,

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.

Respectfully,
Lora

girlgeek33 wrote:
Today I learned of someone, a friend, that lost her battle with this MonSter. She was only 45. She had been in the hospital for several weeks on saline and steroids. Aren't Doctors supposed to do everything they can to help a patient live? Shouldn't an MS patient at that stage be able to be tested in the hospital in order for Doctors to all they can to preserve life? Isn't the possibility of the vascular connection enough at that point in the course of this disease for them to test and potentially treat? I am disgusted that we as MSers are constantly given minimal care because we have MS and things are just blamed on our disease!!! When did we become second class citizens?!

<tears>

These people are being murdered. For whatever reason. If it is a buck, or an ego, or bureaucracy, or scientific stubbornness, whatever it is. If in law it would only be malpractice, or manslaughter. Whatever. It is still a crime of omission. It is still deliberate. It is still murder. Your friend was murdered.

Sins of omission are still sins. Even if they're called wilfull negligence.

Not by you, Dr. Sclafani!

"Liberation" would have saved her life? can you show me some of the studies which led you to believe that? It's terrible when an illness takes someones life, but I would like you to explain your post. If people are on the verge of dying from MS the procedure will save their lives?

yes. it would have saved her life. not doing it was murder.

Not by you, Dr. Sclafani!