This Is MS Multiple Sclerosis Knowledge & Support Community

The videos that I posted aren't me. A friend sent them to me so I had to share. Amazing aren't they?

Karenems wrote:THIS VIDEO WAS TAKEN 2 DAYS AGO.



LESS THAN 24 HOURS AFTER CCSVI LIBERATION SURGERY YESTERDAY

WOW ! ! !

Not Lazarus rising from the dead, but pretty darn close!

This says that some fairly simple video pre- and post- procedure can tell a whole lot about what happens when you improve blood flow.

Video like this may well help with the IRB application and should be required viewing by all hospital legal departments!

Again, WOW.

One other comment. These videos really change my view of what the benefits of CCSVI are and what should be measured in ongoing research.

My thinking was that if you improve the blood flow, you get warmer feet and things like that which seem logically related to the blood flow, not balance which would seem to be more related to damage to nerves.

Clearly, at least in this case, the benefits are greater than I would have expected suggesting that the survey data has to be much broader than I would have initially imagined. It also suggests that any research ought to include pre- and post- videos because those moving pictures sure do tell lot more than words ever can.

jr5646 wrote:We should all be familiar with subcutaneous injections - under the skin (copaxone, rebif), Intramuscular IM injections - into the muscle (avonex, betaseron?) and Infusion or Intravenous IV - within a vein (Tysabri, Solu-Medrol)

I think since we do the above on a regular basis, we can easily handle PERCUTANEOUS VENOPLASTY

jr5646 wrote:We should all be familiar with subcutaneous injections - under the skin (copaxone, rebif), Intramuscular IM injections - into the muscle (avonex, betaseron?) and Infusion or Intravenous IV - within a vein (Tysabri, Solu-Medrol)

I think since we do the above on a regular basis, we can easily handle PERCUTANEOUS VENOPLASTY

jr, if the IRB holds off approval until after June 24th, the new Sheraton Brooklyn is opening up down the block from the Marriott, it looks good too.

Dr.S, hope your day was sun-filled...

Karenems, I watched both videos, tears welled up, I hope everyone gets to experience what she did...so dramatic and hopeful.

I think if percutaneous venoplasty is to surgery as tuna fish is to sushi, maybe copaxone injections are along the lines of fish flakes...or fish-flavored crackers...something more minor, anyways, because while the risk of skin reactions or infection is there, if I ever find my copaxone needle threading through my heart on its way to my jugulars, I'll know I've gone seriously wrong.... ...but the part about us being able to handle this, I agree...msers are tough cookies, fish-flavored or otherwise...

Cece wrote:jr, if the IRB holds off approval until after June 24th, the new Sheraton Brooklyn is opening up down the block from the Marriott, it looks good too.

Dr.S, hope your day was sun-filled...

Karenems, I watched both videos, tears welled up, I hope everyone gets to experience what she did...so dramatic and hopeful.

I think if percutaneous venoplasty is to surgery as tuna fish is to sushi, maybe copaxone injections are along the lines of fish flakes...or fish-flavored crackers...something more minor, anyways, because while the risk of skin reactions or infection is there, if I ever find my copaxone needle threading through my heart on its way to my jugulars, I'll know I've gone seriously wrong.... ...but the part about us being able to handle this, I agree...msers are tough cookies, fish-flavored or otherwise...

Thanks Cece.. I never thought of that.. I checked it out prior to making reservations at the Marriott. Hopefully it will be before they open .. If not I'll stay at the Sheraton, save a couple bucks and check out a show or two !!

I'll take the cath thru the heart any day as opposed to repeated lifetime subcutaneous injections of hamster ovary cells... God only knows what that crap is doing to us longterm.. not mentioning all the other stuff we take and/or what the other dmd's are made from?

@Karenms - thanks for posting the videos... Unbelievable... How could this possibly be considered placebo?? I think because we've only had ineffective drugs for so long.. our biggest hope was to not progress.. I feel selfish saying this, but after seeing the videos I think i'd like more. I have a 5yr. old that I love to play catch with someday...


ms'ers are tough.. but ms has been kicking my ass lately.. both and mentally and physically.. Come on IRB..

Rebif is considered to be a biologic because it is a synthetic version of a human interferon and is made in Chinese hamster ovary cells

prairiegirl wrote:@Karenems WOW! Dr. S, are you seeing some patients with fast and dramatic improvements like this?

i have seen even more dramatic improvementws. but some of the most dramatic do not last for very long. is it restenosis? , i supsect it is, although i wonder what really is the symptom change3 very often
.

but the improvements are sometimes frighteningly dramatic. so much that it feels like i could not have caused that to happen

Cece wrote:jr, if the IRB holds off approval until after June 24th, the new Sheraton Brooklyn is opening up down the block from the Marriott, it looks good too.

Dr.S, hope your day was sun-filled...

nearer to the hospital and closer to my my home is a boutique hotel, called hotel le bleu that has four wheelchair accessible rooms. i was able to get the rate down to about $185. i would prefer closer and cheaper because it helps those who cannot afford the marriott cost.

drsclafani wrote:

prairiegirl wrote:@Karenems WOW! Dr. S, are you seeing some patients with fast and dramatic improvements like this?

Dr S
i have seen even more dramatic improvementws. but some of the most dramatic do not last for very long. is it restenosis? , i supsect it is, although i wonder what really is the symptom change3 very often
.

but the improvements are sometimes frighteningly dramatic. so much that it feels like i could not have caused that to happen

what are your thoughts on what may be the cause? Have you gone back in to look? How can the vascular flow have such effects?

If it is " myelin damage", as i thought it is seen by neuros, how could there be any such response and if there is restenosis then reverting back of symptoms doesn't that show the direct relationship of ccsvi to symptoms? rather than calling those symptoms MS. the plaques did not repair that fast. what am i missing here? quite a placebo.... perhaps touched by an angel......
Oh, so much appreciation!

Hi again. I wonder about this experience. I was in the ER last summer and the staff put a nitroglycerin patch on me because I'd had cardiac symptoms. As it turned out the cardiac stuff was from a seizure, not primary cardiac problems.

But the patch was interesting -- the constant headache I had went away, I felt alert for once, my hands were warm and moving, and I was able to move my head around without as much dizziness and even talk to people clearly -- in fact, maybe even like a mini-liberation, from what I am hearing people describe. Then after they removed the patch it all reverted to my usual junk.

What is your take on that? Could vasodilation help people waiting for their liberation? Does that help explain the effects, along with better oxygenation?

Dr. Sclafani,

One huge piece of the equation that we patients don't have access to is what happened to the folks who had the procedure done.

We've seen a few remarkable videos. We've heard from a couple of people who didn't have good results or didn't have them long-term. We have a few self-reports on this site, but they are usually incomplete and not updated. I assume the pro-CCSVI doctors are keeping records of patients' conditions pre- and post-.

So what are you finding? For example, do most people get reduction from pain? How much does walking and balance improve? Is the rate of improvement much better in RRMS patients than SP or PP? What else should we know to ask about?

My doctor said I should have this procedure, but he wouldn't say why. I assume he feels that it will treat my symptoms, but he won't give me anything specific. I'm not looking for guarantees, but it would be helpful if he said that "we see improvement in your symptoms in most patients with your kind of MS". Otherwise, I feel like his lab rat rather than his patient.

So can you shed any light on post-procedure changes in patients' conditions?

Gratefully!

Good morning Dr. Sclafani,

I am on your list and will hopefully meet you soon. While we are all waiting for the approval, are you doing follow-ups with the patients that you have already liberated? In general, how are they doing?

a grateful and hopefully future patient

found it: http://www.hotellebleu.com/

Any thoughts on cryoballoon (cold) or brachytherapy (radiation, delivered in the balloon) as means to reduce restenosis in CCSVI?

I read...somewhere on the web...that the standard after angioplasty is that up to 30% stenosis remaining is considered a success. Is 0% unreachable?

drsclafani wrote:but the improvements are sometimes frighteningly dramatic. so much that it feels like i could not have caused that to happen

who knew plumbers had the best gossip...

drsclafani wrote:My concern about stents is more related to in-stent restenosis. we will need more work to see what problems occur with this

Dr Sclafani, I only found information on internet on in-stent restenosis in arteries and have a few questions related to this. Here some quotes I found:

- "Initially, new tissue growing inside the stent consists of healthy cells from the lining of the arterial wall (endothelium). Later, scar tissue may form underneath the new healthy lining. In about 25% of patients, the growth of scar tissue underneath the lining of the artery may be so thick that it can obstruct the blood flow and produce an important blockage. In-stent restenosis is typically seen 3 to 6 months after the procedure; after 12 months have passed uneventfully, it is rare."
=> Would you know if there have been any cases in percutaneous venoplasty so far?

- "Compared with balloon angioplasty alone, where the chance of restenosis is 40%, stents reduce the chance of restenosis to 25%" ?! =>This approx. figure also likely for percutaneous venoplasty?

- "Can in-stent restenosis be prevented? =>Can it?
Prevention of in-stent restenosis starts at the point of stent implantation. The physician’s knowledge of appropriate stent placement is crucial. Drugs and vitamins administered either orally or intravenously have been tested for prevention of restenosis and in-stent restenosis, but have not been consistently shown to be helpful."

- "New Techniques to Prevent Restenosis: Drug-Eluting Stent => Are those applied anywhere already? Guess only in research? Or is this old info that not FDA approved yet?
A breakthrough for the prevention of in-stent restenosis occurred in the form of a new generation of "drug-eluting" stents. These stents carry a special drug on their surface that prevents scar tissue growth in the artery where the stent is placed. Drug-eluting stents are not yet approved by the FDA, and the results of further studies are awaited."

- "How do we treat restenosis? => EFFECTIVE?
Repeat angioplasty or bypass surgery can be used to treat in-stent restenosis. In addition, local intravascular radiation (brachytherapy) can be used after treating in-stent restenosis with angioplasty to prevent reoccurrence."

- "What can patients do to protect themselves? => THAT SOUNDS FEASIBLE
After the procedure, patients should lead a heart-healthy lifestyle that includes a diet low in animal fat, regular exercise, blood pressure control, cessation of smoking, and minimal alcohol consumption. Regularly following-up with a cardiologist and taking medications as prescribed are also important preventive measures."

Maybe too many questions, and maybe they were already answered elsewhere? Then sorry...

drsclafani wrote:

prairiegirl wrote:@Karenems WOW! Dr. S, are you seeing some patients with fast and dramatic improvements like this?

i have seen even more dramatic improvementws. but some of the most dramatic do not last for very long. is it restenosis? , i supsect it is, although i wonder what really is the symptom change3 very often
.

but the improvements are sometimes frighteningly dramatic. so much that it feels like i could not have caused that to happen

but if so dramatic, I trust we can now skip the doubts on this placebo effect argument !! It can be quite insulting and there are so many different testimonials on same type of improvements in different places.

And even from people that 3 years ago did not know anything about CCSVI yet. Many Italians were not even aware what was behind it when they participated in Salvi/Zamboni's project!! One said: "3 years ago, me and my wife were looking at Zamboni after he had explained us the procedure and we said: either he is a genious or a crazy man in a white coat." However, he then had improvements and no replapses until restenosis occured... Then I heard s.o. on whom a doppler test was performed 3 years ago in Ferrara and he said he had no clue, why did they do this, if MS is an auto-immune disease..., why do they check my veins? So people that participated were skeptical, did not understand the reasons behind it and they still had improvements - cannot be placebo!!!

Heard an Italian patient that underwent percutaneous venoplasty joke: "here I am, I'm the result of the famous placebo effect ! And I'm the placebo guy, still improvements after 3 years and who had 3 relapses yearly and was living in a cloudy relapse world for 17 years before...! This is in no way a miracle, nor placebo, but the application of scientific knowledge!"

And there were cases that got balloon dilatatation a second time by Zamboni during a relapse (instead of cortisone), in fact restenosis was found, and the new symptoms of the relapse immediately disappeared...