This Is MS Multiple Sclerosis Knowledge & Support Community

New parent company? Did I miss something?

Robnl wrote:Well, isn't it time that ccsvi gets accepted by the medical 'sector'?? How can that be accomplished??

If i hear my neurologist (great guy, no complains) talking about the ccsvi 'hoax'; no proof, no publications....i get the impression it is going to 'fast' for them, they cant keep up.

Suppose it will take many years before progression will be seen on that side, a side necessary to fully explore ccsvi
(ahh, a bit of frustration my dear )

Let me review and prognosticate


Let us presume that the year of the original zamboni treatment paper was about dissemination of the idea, discussions and clarifications about misunderstandings of what it said, initial attempts to refute and defend. This second year has shown an increase in publications about this idea and that will really begin to snowball in 2012. Randomized trials will become more frequent and we will find out what the value and limitation of ccsvi are. Also various technical nuances will be reported and compared for efficacy.

eventually, a trial with sham arm will be published in NEUROLOGY and presented at ECTRIMS. Probably in 2013.

Assuming that the results will be favorable (I am confident), it will then take 3-5 years for insurers and CMS to approve this procedure that they have now denied unless the public advocates very strongly for expedited review..

drsclafani wrote:I have competed two studies and submitted abstracts for SIR meeting in spring.

Congrats on completing the studies and getting those abstracts in! When will you know if they are accepted? Will you be submitting anything for ISNVD?

As for the prognostications, it is painful to see how quickly you anticipate things moving in the next two years and then how slowly for the insurance companies or Canada to act on it.

drsclafani wrote:

Robnl wrote:Well, isn't it time that ccsvi gets accepted by the medical 'sector'?? How can that be accomplished??

If i hear my neurologist (great guy, no complains) talking about the ccsvi 'hoax'; no proof, no publications....i get the impression it is going to 'fast' for them, they cant keep up.

Suppose it will take many years before progression will be seen on that side, a side necessary to fully explore ccsvi
(ahh, a bit of frustration my dear )

Let me review and prognosticate


Let us presume that the year of the original zamboni treatment paper was about dissemination of the idea, discussions and clarifications about misunderstandings of what it said, initial attempts to refute and defend. This second year has shown an increase in publications about this idea and that will really begin to snowball in 2012. Randomized trials will become more frequent and we will find out what the value and limitation of ccsvi are. Also various technical nuances will be reported and compared for efficacy.

eventually, a trial with sham arm will be published in NEUROLOGY and presented at ECTRIMS. Probably in 2013.

Assuming that the results will be favorable (I am confident), it will then take 3-5 years for insurers and CMS to approve this procedure that they have now denied unless the public advocates very strongly for expedited review..

Thx doc! Great 'point in time'

Robnl wrote:Well, isn't it time that ccsvi gets accepted by the medical 'sector'?? How can that be accomplished??

If i hear my neurologist (great guy, no complains) talking about the ccsvi 'hoax'; no proof, no publications....i get the impression it is going to 'fast' for them, they cant keep up.

Suppose it will take many years before progression will be seen on that side, a side necessary to fully explore ccsvi
(ahh, a bit of frustration my dear )

people see what they are prepared to see.

this is all so strange to many physicians and some very vocal experts have denigrated everything about this.

but time will turn the tide

Rosegirl wrote:Dr. Sclafani,

Perhaps you could update us on some issues:

Is the proposed data base of patients up and running yet, and if so, how many people have been treated? Of those, is there data on how many have been re-treated? Are any other useful statistics starting to emerge?

Although it is still relatively early to draw conclusions, does the 1/3, 1/3, 1/3 rule still seem to apply (equal numbers of patients who get great improvement, moderate improvement or no change)?

As you and your colleagues prepare to present your findings at the spring conferences, can you give us some idea of what topics are likely to be discussed?

while we waited for IRB approval, much time has elapsed. we now face the difficult task of trying to get the followup data on more than 750 patients. What percentage will actually respond? Much of this data will be lost if patients do not choose to participate.

i am just beginning to get the one year followup data.

Some of the findings i have noted are quire surprising, but will need peer review now

NZer1 wrote:Dr. S I have been thinking about the number of re-stenosis's and wounder if there needs to be a gradual approach with widening the valves and narrowed veins. If there is IVUS inspection there will be more insight, my thought is that some of the dilation's are 'possibly' to much to achieve the goal in one stage and that the vein may need to be brought to size over more than one sudden stretch?

i think this is likely in some patients

The other thought is about how often when there is re-stenosis is it in the same area, (this is with you're own patients where you are the only person treating)?

my personal experience with restenosis is little. I just done seem to have many patients coming back to me because of restenosis. I dont know whether than means they have gone elsewhere.

If a person was treated by the same IR is the re-stenosis likely to be in the same place or elsewhere? If for instance if I was treated by you would a local (NZ) IR be able to confidently re-treat, or is it going to be a case of starting from stratch and searching everywhere again because there is no pattern to a re-stenosis or perceived re-stenosis?

actually i think most of the stenoses are valvular problems and most of the restenosis is vlvular in nature too. so i think that it is likely that most of the restenoses are going to be where you expect a stenosis to recur. However there are those who are also over dilateding and these may actually result in stenoses in a new location.

at this time, i think it would be wise for whomever is re-evaluationg and re-treating to reimage all the major outflow veins and the treated inflow veins.

Regards Nigel
NZ, Rubgy World Cup holders [/quote]

bestadmom wrote:New parent company? Did I miss something?

yes, american access was merged with fraesenius an $8B company with a goodly amount of research money . lets hope for the best

drsclafani wrote:

Robnl wrote:Well, isn't it time that ccsvi gets accepted by the medical 'sector'?? How can that be accomplished??

If i hear my neurologist (great guy, no complains) talking about the ccsvi 'hoax'; no proof, no publications....i get the impression it is going to 'fast' for them, they cant keep up.

Suppose it will take many years before progression will be seen on that side, a side necessary to fully explore ccsvi
(ahh, a bit of frustration my dear )

people see what they are prepared to see.

this is all so strange to many physicians and some very vocal experts have denigrated everything about this.

but time will turn the tide

Right again doc
(sad thing is that we're talking about MS-patients (and maybe other diseases)and their struggle for a better life...but; heads up and full force ahead!!!
(succes at IVEC/ISVS:
96. 12.07-12.14 Intravascular Ultrasound for Diagnosis and Treatment Planning in
CCSVI Salvatore ja Sclafani (New York, NY, USA)
Do you really only get 7 minutes?? put it in overdrive )

Hi Dr. Sclafani,
I greatly appreciate your time and concern.
If my azygous has a stenosis, (or another problem that would impede blood flow) is that indicative of weakness and
pain in the legs, and lower back pain? My US showed good flow in my JVs, but I can't be sure about my azygous. With my first procedure,
my legs felt stronger than they do now after my second procedure. Thank you,
God bless!!

dlynn wrote:Hi Dr. Sclafani,
I greatly appreciate your time and concern.
If my azygous has a stenosis, (or another problem that would impede blood flow) is that indicative of weakness and
pain in the legs, and lower back pain? My US showed good flow in my JVs, but I can't be sure about my azygous. With my first procedure,
my legs felt stronger than they do now after my second procedure. Thank you,
God bless!!

There is no correlation between location of stenoses and symptoms that i can detect.

There are about 20 veins that can be involved in ccsvi
right and left transverse sinuses
right and left IJV
right and left vertebral veins
right and left innominate veins
Azygous vein
Hemiazygous vein
left renal vein
left iliac vein
ascending lumbar vein
and eight lumbar veins

Each is either an inflow vein or an outflow vein depending on circumstances.

A three vein interrogation just does not cut it.

DrS

Robnl wrote:

drsclafani wrote:

Robnl wrote:Well, isn't it time that ccsvi gets accepted by the medical 'sector'?? How can that be accomplished??

If i hear my neurologist (great guy, no complains) talking about the ccsvi 'hoax'; no proof, no publications....i get the impression it is going to 'fast' for them, they cant keep up.

Suppose it will take many years before progression will be seen on that side, a side necessary to fully explore ccsvi
(ahh, a bit of frustration my dear )

people see what they are prepared to see.

this is all so strange to many physicians and some very vocal experts have denigrated everything about this.

but time will turn the tide

Right again doc
(sad thing is that we're talking about MS-patients (and maybe other diseases)and their struggle for a better life...but; heads up and full force ahead!!!
(succes at IVEC/ISVS:
96. 12.07-12.14 Intravascular Ultrasound for Diagnosis and Treatment Planning in
CCSVI Salvatore ja Sclafani (New York, NY, USA)
Do you really only get 7 minutes?? put it in overdrive )

it is much more difficult to give a 7 minute talk than a 70 minute talk.
it really condenses down the the key points. I always have too much to say

reading

again, no medical training here , but veins are flexible from my understanding. So, if after being expanded, the blood flow (and/or pressure) is insufficient at times to hold the vein open in the new larger diameter, could the vein possibly just take up the smaller diameter, and the extra vein diameter/stretched material be forced to "gather" and appear as scar material? If not, what would happen to a vein that was ballooned, but then did not have sufficient flow and pressure to hold it open? worst case, if a new blockage occurred upstream in the flow?

----- edit ----
Just found cece's post in another thread, regarding "vascular remodelling" which I think places the above a LOT more eloquently, and uses that medical/science stuff ... wait a sec... that was after my post. Do you think the researchers read mine? huh?

drsclafani wrote:

the treatment starategy of thrombosis depends upon
1. clinical effects
2. location of the thrombus
3. whether thrombus is occlusive or not
4. how old the thrombus is
5.how long the thrombosis is
6. whether there is room to manipulate catheters above and below the thrombus
7. whether there is an inherent coagulopathy
8. what caused the thrombus
9. what was the prognosis for the vein before the thrombosis
10. what are the risks of the intervention

as you can see this is going to be a long discussion.

Lets see if anyone is reading.

I can now answer 5 and 7
5. The ultrasound shows an occlusive clot on J1 segment of the LJV, with a lot of collaterals.
J2 and J3 are free of thrombus. No hypoplasia.
RJV and vertebrals show brisk flow. There is reflux in the deep cerebral veins.
7. There is no coagulopathy in the medical history
My friend is on Pradaxa 110 mg twice a day now.

Dr S, what do you suggest?
Is a second intervention possible? If yes, when?