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Donnchadh wrote:Dr. Scalfani:

Just how common in use is an ivus? It would seem to be a great way to examine a stenosis literally from the inside out. I suspect that my bilateral IJV stenosis were caused an by injury; if that is true, could an IR observe internal scar tissue with an ivus? Can a visual recording be made using an ivus?

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

fogdweller wrote:

HappyPoet wrote: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

CureIous wrote:

Donnchadh wrote:Dr. Scalfani:

Just how common in use is an ivus? It would seem to be a great way to examine a stenosis literally from the inside out. I suspect that my bilateral IJV stenosis were caused an by injury; if that is true, could an IR observe internal scar tissue with an ivus? Can a visual recording be made using an ivus?

Donnchadh

Just to interject, my IVUS in April printed out on your average small sonogram paper maybe 3x3 inches. He explained what I was looking at as I was laying there because I asked to see it, it's kinda like looking at a very early on sonogram of your child, not much to see there, for the untrained eye of course. What I wouldn't give to have a copy of that! All I did was nod my head and agree. "well of course" lol. Musta been the morphine talking... It did show (after it was pointed out to me with a ballpoint pen) the septum inside my vein before and after. Guess it wouldn't be too much of a stretch to think it can see other stuff too. Plus the annular vein was clearly visible. Trippiest thing I'd ever seen.

Sorry for butting in, I'm sure the good Dr. will have plenty to say...

Mark

i think i said it.....but why were you getting morphine. I give no sedation or analgesia for this procedure. nobody complains and patients leave in an hour

I was getting angioplasty, the IVUS came in after the veno showed some collateral filling. This was 9 months post stenting and related to some slight pressure gradients upstream that piqued his curiousity so he brought in the IVUS and found the septum down near the collarbone. Fixed my venous hum which was the goal. Sweet delectable silence. Ahh.
The stent on that side worked so well the blood was like a freight train coming through the bend. The septum creating a throttling and pressure gradient upstream in a narrower part pushed by C1. Once the septum was angio'd out of the way the flow was more laminar and the pressure gradient obliterated around the C1 level. I think I butchered that explanation to death. Long day....
Thanks for staying up late with us doc...
Mark.

p.s. I think there was morphine but it was nothing like when I had the stents put in pain-wise. Wasn't loopy at all...

drsclafani wrote:

Donnchadh wrote:Dr. Scalfani:

Just how common in use is an ivus? It would seem to be a great way to examine a stenosis literally from the inside out. I suspect that my bilateral IJV stenosis were caused an by injury; if that is true, could an IR observe internal scar tissue with an ivus? Can a visual recording be made using an ivus?

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?

Zeureka wrote:

drsclafani wrote:

Donnchadh wrote:Dr. Scalfani:

Just how common in use is an ivus? It would seem to be a great way to examine a stenosis literally from the inside out. I suspect that my bilateral IJV stenosis were caused an by injury; if that is true, could an IR observe internal scar tissue with an ivus? Can a visual recording be made using an ivus?

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.

drsclafani wrote:
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?

drsclafani wrote: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.

Just looked at my bill, and granted this isn't what my insurance paid just what the hospital charged. I see one line is "HC Intrav. US non-cor" at 2,772, then "HC Intravasc US non-CO" at 3,245. That's of course not including the charges for the catheters etc that seems to be just the IVUS itself being used. Of course that's university hospital prices, but still kinda hefty. I guess the best part is my insurance paid for it, and they are stingy so that's a good sign right? Total bill was 66k, insurance paid 21k and they adjusted the rest. That's blue cross blue shield ppo fyi, and just so others know that there *is* a possibility of insurance covering this.

Mark

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

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

drsclafani wrote: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).

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?

drsclafani wrote:

Zeureka wrote:

drsclafani wrote:
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 wrote:

drsclafani wrote: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!

drsclafani wrote: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.

Donnchadh wrote: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?

drsclafani wrote: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.

CCSVIhusband wrote:

Cece wrote: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.

Blaze wrote: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.