DrSclafani answers some questions

[Cece]

Just to second what Mark said, most people are finding that their insurance companies are paying for this.

the catheter venogram is the gold standard NOT the diamond or platinum standard, meaning things can be missed. IVUS and other tests can augment the findings of catheter venography

I would argue that catheter venogram with IVUS in the hands of a skilled CCSVI doc is the true top standard...and how many skilled ccsvi docs do we have?? Not nearly enough.

[CCSVIhusband]

Just to second what Mark said, most people are finding that their insurance companies are paying for this.

the catheter venogram is the gold standard NOT the diamond or platinum standard, meaning things can be missed. IVUS and other tests can augment the findings of catheter venography

I would argue that catheter venogram with IVUS in the hands of a skilled CCSVI doc is the true top standard...and how many skilled ccsvi docs do we have?? Not nearly enough.

NOT NEARLY ENOUGH ... but more than you think ... (and their numbers are growing by the day).

[Blaze]

I have been following this thread since it began, but this is my first post here. Thank you Dr. Sclafani for all I have learned from you and others.

I had an MRV in January which showed poor filling of right transverse and sigmoid sinuses. It was stated "this may be a reflection of a previous sinus thrombosis with incomplete recanalization."

A Doppler ultrasound last week showed "venous blockage was evident in the internal right internal jugular vein at 0 and 90 degrees. The jugular vein is non responsive to respiratory phases with a negative delta in cross sectional area...The cerebral venous outflow appears patent with no venous thrombosis on left. Venous insufficiency is evident with reflux in the left internal jugular vein at 0 and 90 degrees." There are also other clinical details, including that I meet 4 of 5 criteria for CCSVI.

With an MRV at one hospital showing a possibility of a previous right sinus thrombosis and a Doppler ultrasound at another clinical site (where they had not seen the MRV results) indicating significant blockage on the right, does this indicate a strong argument for me to have my veins unblocked to avoid the risk of another thrombosis?

My neurologist is not convinced these findings are significant. I will see my family physician soon. I hope she may be able to make the case for me to be treated right here in Canada because of the likely earlier thrombosis (Well, I can dream, anyway!).

Does my putting these pieces of the puzzle together like this make sense?

[Donnchadh]

IVUS is rarely used. It is expensive. I found it immensely useful to better understand ccsvi anatomay and to detect abnormalities that cannot be picked up by catheter venography

Dr Sclafani, may I ask in which sense IVUS is expensive? I guess expensive to invest in the IVUS equipment.

But once one bought the equipment, are there then high maintenance costs or costs involved to use it in each procedure? I am just asking as heard that some docs only use it in "special cases" since expensive. Do not understand however once one has equipment what holds back to then use in each procedure if more efficient?

The IVUS unit, that attaches to the IVUS catheter is expensive. Its applications are limited, thus the per procedure "amortization" of the unit is expensive. Then at each procedure, one must put in an IVUS catheter which itself is very expensive.
Also IVUS is time consuming, and this adds another expense to the procedure, for example in doctor, nurse and technologist time and in limiting the number of cases that can be done in a day.

Just so I understand this point, do you mean that the IVUS unit can only be used once and then must be discarded (presumably on grounds of preventing infections) or can it be sterilized and later re-used?

I had wondered about whether the other pieces of equipment used in the procedure (e.g., the catheter, the balloon, etc.) were re-usable or not?

I can understand the additional time caused by using the IVUS would generate higher personal charges.

Perhaps as the liberation procedure becomes more common, the IVUS would come into more use and thereby lower the cost per unit.

Donnchadh

[Cece]

CCSVI is a condition in which the main cerebrospinal venous outflow routes are obstructed, leading to symptoms of fatigue, headaches, weakness and cognitive dysfunction.

This is how you'd separate out the symptoms of CCSVI from the symptoms of MS!

yes, but still have to convince others that it is true

It's back to the process of defining again, like the definition of a web or a membrane or the sorts of malformations seen, and the definition of CCVSI itself.

MS may be nothing more than a collection of neurological signs that are a result of years of untreated CCSVI. The old definition, "MS is an autoimmune disease," is certainly up for redefining. Should it have been called a syndrome all along? It seems more accurate and it might've lowered the resistance to the discovery of CCSVI as a possible cause.

Perhaps as the liberation procedure becomes more common, the IVUS would come into more use and thereby lower the cost per unit.

Or perhaps as patients we need to pick and choose the docs who use ivus over the docs who don't, in the interest of getting the best treatment for ourselves (over the docs' possible interest in cost-cutting)? Or will all docs follow the use of ivus as best practices once it's determined to be best practices?

It seems very ironic that my first plan was to follow dr zamboni's protocol and make modifications afterward. Seems like few chose that path.

Is it that everything is moving faster than expected? There is something of a tidal wave of MS patients seeking out this procedure.

I would argue that catheter venogram with IVUS in the hands of a skilled CCSVI doc is the true top standard...and how many skilled ccsvi docs do we have?? Not nearly enough.

NOT NEARLY ENOUGH ... but more than you think ... (and their numbers are growing by the day).

Very encouraging, CCSVIhusband.

[Nunzio]

I have been following this thread since it began, but this is my first post here. Thank you Dr. Sclafani for all I have learned from you and others.

I had an MRV in January which showed poor filling of right transverse and sigmoid sinuses. It was stated "this may be a reflection of a previous sinus thrombosis with incomplete recanalization."

A Doppler ultrasound last week showed "venous blockage was evident in the internal right internal jugular vein at 0 and 90 degrees. The jugular vein is non responsive to respiratory phases with a negative delta in cross sectional area...The cerebral venous outflow appears patent with no venous thrombosis on left. Venous insufficiency is evident with reflux in the left internal jugular vein at 0 and 90 degrees." There are also other clinical details, including that I meet 4 of 5 criteria for CCSVI.

With an MRV at one hospital showing a possibility of a previous right sinus thrombosis and a Doppler ultrasound at another clinical site (where they had not seen the MRV results) indicating significant blockage on the right, does this indicate a strong argument for me to have my veins unblocked to avoid the risk of another thrombosis?

My neurologist is not convinced these findings are significant. I will see my family physician soon. I hope she may be able to make the case for me to be treated right here in Canada because of the likely earlier thrombosis (Well, I can dream, anyway!).

Does my putting these pieces of the puzzle together like this make sense?

Hi Blaze,
I have your same finding; This is my MRV report:

The sagittal sinus is patent. The sagittal sinus is normal. The left
transverse sinuses patent. The left sigmoid sinus is patent. The
internal jugular vein is patent.

There is severe attenuation of the more distal aspect of the right
transverse sinus with proximal occlusion consistent with
recanalization and reconstitution of a thrombosed proximal right
transverse sinus. The sigmoid sinus is atrophic with flow into an
atretic internal jugular vein.

Great vein of Galen is patent.

Dural branches are patent.

IMPRESSION-
1. Patent sagittal and left transverse sinus with normal sigmoid sinus
and normal left internal jugular vein.
2. Occlusion of the proximal right transverse sinus with
reconstitution of an atretic right transverse sinus, sigmoid sinus and
internal jugular vein.

My U.S. showed a narrow RIJV and a dilated LIJV with a negative delta CSA from 0 to 90 degrees.
Our working diagnose was that the RIJV was narrow because of lack of blood flow from the sinuses. We were hoping to find a blockage on the left side but catheter venogram did not show any blockage . Now it is possible the right sinus thrombosed because of poor flow from a narrow RIJV, but now dilating the RIJV might not help anyway because of poor flow from the sinus. It is also possible the R.Sinus thrombosed when I had a motorcycle accident as a teenager.
Hope Dr. Sclafani can shed some light on the subject and illuminate us with his knowledge.

[fogdweller]

Hi Dr. Sclafani,

Someone mentioned it would be a good idea if a less scary name for the cutting balloon could be found, and I have a suggestion:

The shaping balloon catheter.

~HP

Angioplasty companies could use good marketers. You thiink Cutting Ballon is bad. When antioplasty was just getting started, C.R. Bard (then U.S.C.I.) had a balloon for the coronary arteries that some brilliant person in marketing named "The Headhunter".

this urban legend is not accurate. Actually the catheter we use to get into the jugular veins is called the headhunter

Actually, this was in 198?(1or 2) and I saw the company catalog. It may not have made the market long under that name, but I was involved in a patent suit in the 1980's and that was one of the documents produced by the company during discovery. Certainly not a currently available catheter.

[fogdweller]

Dr. S, I have been trying to get into a study since Oct. last year, and I am not sure there are even any available. I am considering going overseas, probably Poland, since even when they are available, I probably will not be eligable to be a subject anyway (PPMS, over 55, very slow progression at least until recently, remote location.)

My wife thinks I should have a diagnostic study to confirm the existence of CCSVI before I go to the expense of a foreign trip for treatment.

Is a separate diagnostic procedure useful, or will it just have to be repeated? If it is worthwhile, who in the U.S. is skillful and experienced enough to do a useful diagnostic study and is in fact doing those studies?

I have been following this thread for some time, and it seems clear to me that there is a good deal of skill and art in proper diagnostic studies.

[gothicrosie]

Thank you Dr. Sclafani for answering my question.

So much to learn.

[drsclafani]

IVUS is rarely used. It is expensive. I found it immensely useful to better understand ccsvi anatomay and to detect abnormalities that cannot be picked up by catheter venography

The IVUS unit, that attaches to the IVUS catheter is expensive. Its applications are limited, thus the per procedure "amortization" of the unit is expensive. Then at each procedure, one must put in an IVUS catheter which itself is very expensive.
Also IVUS is time consuming, and this adds another expense to the procedure, for example in doctor, nurse and technologist time and in limiting the number of cases that can be done in a day.

Does the benefit outweigh the cost though?

if you are one of those patients whose stenoses were identified only by IVUS, i would say it was priceless.

For my understanding of the pathology, i would say it was priceless to me

we didnt charge for it but it does add considerable expense to the doctor and the facility

[drsclafani]

Thus occlusion of the inominate vein may make it impossible to treat any IJV obstructions on that side
Moreover, someone told me a story about how they had radiation to the chest that resulted in stenosis of the subclavian vein. that in turn appears to have resulted in MS. could you be a second patient?

I have had a couple of chest X Rays but no CT scan.

Is it possible to treat an occluded inominate vein?

Thanks Dr Sclafani.

sometimes there is a slit in the vein at the stenosis. if one can get a guidewire through that slit, it is often possible to venoplast or stent if necessary to reopen the vein. Always worth the shot

[drsclafani]

Just to second what Mark said, most people are finding that their insurance companies are paying for this.

the catheter venogram is the gold standard NOT the diamond or platinum standard, meaning things can be missed. IVUS and other tests can augment the findings of catheter venography

I would argue that catheter venogram with IVUS in the hands of a skilled CCSVI doc is the true top standard...and how many skilled ccsvi docs do we have?? Not nearly enough.

cece
i think we only have one real paper procedure ala zamboni. everything else needs to be proven.
i found ivus to be very helpful in understanding disease and in a few cases it picked up something that the venogram missed

[drsclafani]

Thank you Dr. Sclafani for answering my question.

So much to learn.

aint that the truth

[Cece]

I would argue that catheter venogram with IVUS in the hands of a skilled CCSVI doc is the true top standard...and how many skilled ccsvi docs do we have?? Not nearly enough.

cece
i think we only have one real paper procedure ala zamboni. everything else needs to be proven.
i found ivus to be very helpful in understanding disease and in a few cases it picked up something that the venogram missed

Well, yes. Sometimes I err on the side of exuberance....

[drsclafani]

I have been following this thread since it began, but this is my first post here. Thank you Dr. Sclafani for all I have learned from you and others.

I had an MRV in January which showed poor filling of right transverse and sigmoid sinuses. It was stated "this may be a reflection of a previous sinus thrombosis with incomplete recanalization."

A Doppler ultrasound last week showed "venous blockage was evident in the internal right internal jugular vein at 0 and 90 degrees. The jugular vein is non responsive to respiratory phases with a negative delta in cross sectional area...The cerebral venous outflow appears patent with no venous thrombosis on left. Venous insufficiency is evident with reflux in the left internal jugular vein at 0 and 90 degrees." There are also other clinical details, including that I meet 4 of 5 criteria for CCSVI.

With an MRV at one hospital showing a possibility of a previous right sinus thrombosis and a Doppler ultrasound at another clinical site (where they had not seen the MRV results) indicating significant blockage on the right, does this indicate a strong argument for me to have my veins unblocked to avoid the risk of another thrombosis?

My neurologist is not convinced these findings are significant. I will see my family physician soon. I hope she may be able to make the case for me to be treated right here in Canada because of the likely earlier thrombosis (Well, I can dream, anyway!).

Does my putting these pieces of the puzzle together like this make sense?

The MRV evidence of possible right dural sinus thrombosis is worrisome, especially in the presence of stenosis of the right IJV. Slow flow could lead to thrombosis.

However, there should be disease on both sides, i would think. I am not sure if your description reveals left sided ijv stenosis