This Is MS Multiple Sclerosis Knowledge & Support Community

Dr. S.,

You had mentioned venogram as the "gold standard" for ccsvi detection.. So, do think I should drop $4500 plus travel @ Buffalo - BNAC for testing, or wait and save it for a golf vacation after liberation?

Hopefully you'll get the IRB approval and get back in that saddle???

Thanks,
John

ozarkcanoer wrote:Newfie and everyone,

To my knowledge, this is what you will receive at BNAC :

To specify, you will receive:

MRV of the neck report and CD
MRI of the brain report and CD
Dopper report and CD
Clinical report only
No NP report
No genetic results

NP means neuropsychological exam. They will draw a small amount of blood for a genetic test but you will not get the results. Genetics is a very complicated thing but you are contributing to science !!

ozarkcanoer

girlgeek33 wrote:

mmcc wrote: I am a person willing to take a high level of risk to avoid further disability, but comparing PML to an insicion infection is hardly realistic. The risk of PML so far is estimated at 1 in 1,000, with not all cases fatal. The risk of death from angioplasty (in arteries - don't know for veins) is higher than that.

It is important to realize that neither Tysabri nor Liberation surgery, or any other medical treatment, including aspirin is risk free. The risks from libertation surgery cannot possibly be completely known at this point. I would remind you that a year into Tysabri as a monotherapy there were NO cases of PML. Liberation surgery has not been around long enough to know what the long term risks might be.

That said, I am waiting for my date to have it (and I took Tysabri, too).

I beg to differ. Angioplasty has been a well established, well practiced procedure for more than 3 decades. If this were a brand new, never performed procedure, then you would have a point. BUT, there has never been ANY reason to suggest that improved blood flow would ever have long term negative effects. The risks are early on for the most part. If something adverse were to happen, it would be earlier and not likely to be a year down the road.

This is not the invention of the wheel and it needs to be studied. This is a new use for the wheel, so understanding the benefits seems to be more the case. For that it seems to be overkill to have Drs halted doing this for us.

Angioplasty on arteries definitely has a risk. I agree with you that the risk is probably less when done on veins, but the point I am trying to make is just that libneration surgery DOES have risks - ALL surgery does. Right now there are too few surgeries done to know what that risk is.

For comparison, Tysabri (as a monotherapy) had no PML cases for almost two years after being given to thousands of people. Clearly we now know there is a risk. To me that risk - 1 in 1,000 - makes Tysabri with a very high success rate compared to the ABCRs acceptable.

I am having liberation surgery, but I think it is important to realize that the surgery is never wthout risks, and the level of that risk is not completely known yet.

I totally agree with permitting doctors to do the surgery, assuming they do whatever training is neccessary to be able to do it as safely as possible. But, we are all guinea pigs at the moment - undergoing a new MS treatment - and it is important to realize that.

I also agree that having blocked blood flow doesn't sound like a good thing.

Remember that stents were tried at Stanford and the use of that procedure was stopped because it was considered too risky considering their experience. I am sure they did not think it was as risky as it turned out to be when they started doing them.

Cece wrote: I've read that kids of parents with chronic illnesses end up being more empathetic and more responsible than kids of 'normal' parents, I think it's true.

Mine blows me away, and her professors too! She's so much more mature than some of the grad students and she is in her 3rd year of a 5 year undergrad program. She's doing great things in school and has gotten noticed by the Dean of her college within Drexel University. And she's already doing work on research projects for MS! She's 20!

Sorry, had to share. Time flies when it comes to kids. Triplets, yeah, WOW! They will blow you away some days, now and in the future!!!

Dr. Sclafani,

I think it was Dr. Simka who recently responded to all the public fears now towards the use of stents and the risks involved. I believe that he commented that the risks associated with their use can be mitigated/eliminated with the proper choice of stent size and placement and that he has not had a problem with their use even though he's placed a significant number in patients.

Is this something that you have discussed with him or do you know if he is sharing his expertise in this area with stateside IR's so that they can also feel comfortable using stents in the event that angio is not successful? With somewhere around a 50% restenosis rate with angio, it would seem that the use of stents would really be optimal if we could avoid the serious risks of stent migration from happening. I'm wondering if North American IR's are learning from Simka's experience and will begin the use of stents again where appropriate.

Thanks.

eric593 wrote:Dr. Sclafani,

I think it was Dr. Simka who recently responded to all the public fears now towards the use of stents and the risks involved. I believe that he commented that the risks associated with their use can be mitigated/eliminated with the proper choice of stent size and placement and that he has not had a problem with their use even though he's placed a significant number in patients.

Is this something that you have discussed with him or do you know if he is sharing his expertise in this area with stateside IR's so that they can also feel comfortable using stents in the event that angio is not successful? With somewhere around a 50% restenosis rate with angio, it would seem that the use of stents would really be optimal if we could avoid the serious risks of stent migration from happening. I'm wondering if North American IR's are learning from Simka's experience and will begin the use of stents again where appropriate.

Thanks.

Yes, thanks Eric, would interest me as well in how far opinions and experiences are shared. Simka's comments were published here:
<shortened url>

mmcc wrote: I agree with you that the risk is probably less when done on veins, but the point I am trying to make is just that libneration surgery DOES have risks - ALL surgery does.

If I may quote Dr. Sclafani, from the very first page, regarding the word 'surgery':

drsclafani wrote:i cringe whenever i hear anyone refer to the surgeries. This is as much standard surgery as a tuna fish sandwich is sushi

Did you notice that I never used the word cutting, scalpel, general anesthesia, blood loss, retractors or cautery. Did anyone hear transplant, excision, or anastomosis?

This procedure is performed through a needle the size of a safety pin without any cutting. As the wheelchair kamikaze said to me tonite, he cannot find the spot through which i placed my instruments.

So, while it is true that the dictionary defines surgery as the treatment of disease by instrumentation or manipulation, treatment of ccsvi is as much a surgical procedure as lighting a firecracker is a space launch.

Cece wrote:

mmcc wrote: I agree with you that the risk is probably less when done on veins, but the point I am trying to make is just that libneration surgery DOES have risks - ALL surgery does.

If I may quote Dr. Sclafani, from the very first page, regarding the word 'surgery':

drsclafani wrote:i cringe whenever i hear anyone refer to the surgeries. This is as much standard surgery as a tuna fish sandwich is sushi

Did you notice that I never used the word cutting, scalpel, general anesthesia, blood loss, retractors or cautery. Did anyone hear transplant, excision, or anastomosis?

This procedure is performed through a needle the size of a safety pin without any cutting. As the wheelchair kamikaze said to me tonite, he cannot find the spot through which i placed my instruments.

So, while it is true that the dictionary defines surgery as the treatment of disease by instrumentation or manipulation, treatment of ccsvi is as much a surgical procedure as lighting a firecracker is a space launch.

i think using the term surgery makes people think it is invasive and with all the risks associated with surgery.
I think it has fueled the concerns about safety beyond reality

drsclafani wrote: i think using the term surgery makes people think it is invasive and with all the risks associated with surgery.
I think it has fueled the concerns about safety beyond reality

But the IRB would know how minor of a surgical procedure it is, all things considered?

Dear Dr. Scaflani,

Eveybody is seeing the yugular and the azygos veins in MS patients, but I have a question, in the studies developed until now, the rest of the veins of the body in MS patients were cheked and were corroborated that are normal or not???? because I think that should be necessary to see in MS patients that only these veins have the problems or determinate that is a vascular problem that also affect to more veins in the body.

Cheers,

Monica.

Dr Sclafani,

First, thank you so much for all you are doing to educate us about CCSVI. I am as certain that just as there is a special ring in hell for those opposing CCSVI, there must be special place in heaven for physicians like you who are working so hard to advance treatment of MS (and since several of you are of Italian origin, the food should be pretty good too.)

In the opposition to CCSVI, much is made of the fact that the venous system is very flexible and adaptive and anatomic anomalies are not uncommon. If there is a blockage, blood finds a new path through collaterals which are there at the ready for just this reason. Things may not be normal, but there is no reason to treat.

How do we counter this argument that the nature of CCSVI is in fact different AND problematic and therefore warrants treatment?

Ultimately, we will win when treatment of CCSVI is seen as the purview of Interventional Radiologists and Vascular Surgeons, not those neurologists who are wedded to their current understanding of the nature of MS and willing to toss a sabot into the machine.

In the meantime, we need to win the war of words. Venoplasty is being presented as "dangerous," something neurologists must protect their patients from. A certain set of talking points have evolved to always mention Radeck's stent migration and Holly's unfortunate death from an unrelated arterial aneurysm while tossing in nonsense about access site infection.

Venoplasty is presented as "surgery" which we all know is inherently dangerous and fraught with risks.

Dr. S said he cringes when he hears the terms "surgery" applied to venoplasty.

So does it make sense to change the parameters of this debate by always referring to venoplasty as "NON-INVASIVE VASCULAR INTERVENTION" rather than dangerous surgery?

Squeakycat wrote:So does it make sense to change the parameters of this debate by always referring to venoplasty as "NON-INVASIVE VASCULAR INTERVENTION" rather than dangerous surgery?

But venoplasty is invasive...

monik_77 wrote:Dear Dr. Scaflani,

Eveybody is seeing the yugular and the azygos veins in MS patients, but I have a question, in the studies developed until now, the rest of the veins of the body in MS patients were cheked and were corroborated that are normal or not???? because I think that should be necessary to see in MS patients that only these veins have the problems or determinate that is a vascular problem that also affect to more veins in the body.

Cheers,

Monica.

Monik, it's certainly an interesting question and would also be interested in Dr Sclafani's views. I have been in touch with Dr Schelling on this and he replied to me mid March in German. Here the answer translated in English as much as I can:

"In the case of extensive spinal cord damages the conventional phlebography of neck veins and the azygos vein might not be sufficient to illustrate all critical venous passages. Should there be anomalies of lumbal veins ("Lumbalvenen") or their connections to the lower veins ("Hohlvenen"), it would be required to perform a widening of phlebography which is currently not yet performed in the standard MS protocols. According to Prof Haake work is underway to develop MRV of venous spinal cord/vertebral column drainages, but the results are unfortunately not yet satisfactory."

This was mid March, so maybe there has been some progress on this since then? Dr Sclafani would be interesting, if you have maybe heard anything on this research of potential stenosis in other vein drainages? Can damages in the vertebral column in your view have anything to do with the veins that are currently checked in the standard procedure (jugular/azygos)? Understand that a stenosis in the jugular vein could rather be responsible for brain damage caused by reflux (in form of "Dawson-Finger" and "Steiner-Spritzer" as Schelling explained to me). But the azygos, could that have an impact on myelin damage in the spinal cord/vertebral column?

Cece wrote:
But venoplasty is invasive...

I have no expertise in this terminology.

I would say that venoplasty is MINIMALLY invasive, compared with sawing open your sternum and prying back your ribs, or other sorts of surgery so would MINIMALLY INVASIVE VENOPLASTY work?

Some other thoughts. It is a PERCUTANEOUS VASCULAR INTERVENTION, rather than surgery.

Or rather than surgery, what about just VASCULAR INTERVENTION?

I think words matter in this debate so it will be worth the effort to get this right and as the opposition is now doing with their consistent talking points about the dangers of CCSVI surgery, get into the habit of framing the debate in more favorable, and frankly accurate terms.

Squeakycat, I agree, I just wish there were less unwieldy terms available.