DrSclafani answers some questions

[drsclafani]

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?
Donnchadh

all the catheters, balloons, needles, clamps, towels, etc are all disposable. This reduces the risk of infections

The IVUS catheter is disposable. It costs about $US 650 per catheter.

[drsclafani]

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?

There is no evidence that outcomes of liberation are enhanced by IVUS. Not to say , that it does not enhance outcomes. Just that there is no evidence. You as patients have an obligation to yourselves to seek out BEST practice. However that is not what is going on. You are seeking out AVAILABLE practice. Some of what I see is really not best practice. Most of those treating are not performing as Dr Zamboni reported.

AND ZAMBONI HAS PROVIDED THE ONLY EVIDENCE OF EFFICACY.


There is a lot of assumptions in the way doctors are treating:
MRV is the screening test: someone please show me where MRV was compared against catheter venography

US only needs part of the zamboni technique: based upon what evidence

Anyone can open shop and people will go for treatment there: yet some testing i have seen is really suboptimal

Lots of stents on the first treatment: who has written about the efficacy of stenting either short term, or long term

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 am not sure that a tidal wave is a healthy thing. I am deeply concerned when a patient is told that there catheter venogram shows a normal right IJV and an occlusion of the left IJV but I see an abnormal right IJV and a catheter venogram of the vertebral vein is called an occluded IJV. Some neurologists are smirking about this stuff

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.

You will be happy to hear that the first CCSVI Symposium, put together just a few weeks ago is getting a fair amount of interest, thanks in part to your efforts. Yesterday a CCSVI treating physician from Bulgaria reserved to come to the meeting in Brooklyn! Keep up the good work. You will accomplish much by encouraging doctors to be involved in the educational process.

[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?

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.

I must acknowledge that I have little experience with dural sinus occlusions other than what i have also read. However balloon dilatation with/or without stenting may have a role in restoring direct line drainage. For the moment at least, I think that this is beyond the expertise of many IRs, surgeons and cardiologists. I think that exploration of these sinuses may in fact be better performed by the interventional neuroradiologists. I personally would seek advice and counsel about approachest to treat this entity from them. I would be happy to assist them, not the other way around.

[drsclafani]

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.

I think your wife is a wise person. A doppler study is inexpensive and at least confirms that you have disease in the venous outflow.

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?

you are a wise man. The doppler is a challenging test and inaccurate if done incorrectly. how to find someone? Good question. and it illustrates the need for standarization and accreditation

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.

amen, brother

[Zeureka]

I wonder if the new understanding that M-T syndrome may be occurring and significant lower veins may also be blocked might also shed some light on why some people seem to worsen following vascular treatment.

If only upper veins are unblocked, the increased flow throughout the entire closed circuit venous system created by the better blood flow is going to encounter these blockages lower down.

I wonder if it would cause even greater reflux in these persisting lower blockages (or whatever mechanism is discovered to create the eventual demyelination) and thus cause a worsening for some people in their health neurologically. I visualize a dam in a river that is unblocked, and the pent up water is unleashed and goes crashing downstream. But if it then encounters another blockage, it's going to be hitting up against it at full force, greater than even before, since the earlier blockages had resulted in only a trickling stream of water getting the whole way through when there were multiple blockages. Now, the water flows at much greater rate and force, hitting on the lower dam. That's going to create some problems, I would imagine.

Just a simple thought that might be completely off base....

your idea is not quite right. the problem with MT is that blood from the leg is being routed through the vertebral plexus and other veins. But this may only contribute to the disease not cause it

2. The reason to look for a May thurner syndrome is not because anyone thinks there is an association. Zamboni only found about 3 patients in more than 100 patients.

MT is estimated to have a prevalence of 2-3% in the normal population, so thanks for giving us Zamboni's numbers, it sounds like they're the same.

Just a question related to this May-Thurner-syndrome - Zamboni found 3 patients upon more than 100 (so finding 3 could be even not too little?) - and leaving MS apart whether direct link or not: Could MT (or lets rather generally say a stenosis in the iliac vein) cause numbness symptoms/circulatory blood flow problems/pins&needles in extremities such as legs and feet?

The cause of the MTsyndrome related to a left iliac vein compression against lumbar spine by overlying right iliac artery (as understand from wikipedia).

Studies report about more left-sided leg symptoms (and angioplasty with stents in the left iliac vein seems common practice for treatment). But in case of CCSVI, if there would be either a stenosis in this left iliac vein or also in other nearby lumbar veins then could such similar symptoms not also occur for same reason as in MT (blood clotting) on the right side - so not related to myelin damage but deep venous thrombosis (DVT)?
Just some brainstorming, might be completely wrong...

[Algis]

Dear Doctor:

For the records; I've got a 'compression' of the left IJV; the Doctor say it is useless to balloon and that he has no any suitable stent for the job; then put me on limbo; waiting for an appropriate stent to be available.

[Blaze]

Thank you for your replies to Nunzio and me. In your response to Nunzio, you suggest an interventional neuroradiologist, rather than an IR, surgeon or cardiologist. Does the same apply to me?

Does an earlier possible thrombosis mean Nunzio and I would or would not be candidates for normal treatment of CCSVI? Although MRV Findings stated poor filling of the sinuses "may be a reflection of a previous sinus thrombosis," in the Opinion section, the radiologist also stated this "may represent congenital hyoplasia, however, the possibility of earlier sinus thrombosis....cannot be excluded." No wonder I'm confused! Does that possible congenital opinion affect whether I would need an INR?

I personally am not willing to travel overseas, but I am on the waiting lists for Dr. Siskin and for Arizona Heart Institute. I'm also hoping Dr. McDonald in Canada may receive approval for his study. I know Dr. McDonald is working with an IR, but I don't think he is an interventional neuroradiologist.

Thank you so much for your time and patience as you help all of us to work through our issues.

[LauraV]

*********

Dr. Sclafani,
I'm not sure I'm doing this quote thing correctly. Please bear with me.
The quote below is from the Essential Health Centre in the UK. They're going to open up more CCSVI scanning and treatment centers to meet the growing demand. It looks like what they are planning is similar to your IRB approval request . Am I right on that? Do you think this could help our efforts in the US?


[/quote]
We are planning to collect data on all those we treat as part of a formal research project that requires ethics research approval and we are currently working on achieving this as quickly as possible. These requirements will mean that actual interventions may be slightly delayed, however we will be opening more appointments for the months of September and October to people on our waiting list. We still anticipate seeing and treating everyone on our waiting list before the end of the year and this could be even sooner once we have multiple sites in place.
[quote]

[SCGirl]

Hello Dr.,
I sent you a PM, but wasnt sure if you would check that. I have had a venogram and angiogram (both catheter) and no stenosis was found. Should I have someone else looked at the films.. or should I have another test done?
I would love to hear from you.
Margarette

[Cece]

SCGirl, he might need to know which veins were checked in your venogram...was the azygous checked too? Was this by an IR who had successfully found CCSVI in other people before?

Algis, sorry to hear about the limbo.

[L]

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

Thanks again. One final question (I promise.) If it does turn out to be the problem and venoplasty isn't an option would an operation be possible to fix the problem?

I think that I shall get in touch with my cardiologist.

Thanks again for taking the time for us, it is so very good of you.

[SCGirl]

CeCe,
I hate to sound stupid, but I don't know what veins were checked! I just know they went in both sides of the groin and up through the neck and head. The IR who did it had read up on Zamboni's research; however, he did tell me that he had done the procedure on one other person and had found no stenosis on them as well.

[JOhnnybaby248]

Dr. S

Well dr I got my results from the Doppler and was wondering if I post what it says can you please help me try to understand it. I know that I have CCSVI But dont understand in what way

Findings Right Jugular
The cerebral venous outflow appears patent with no evidence on venous thrombosis. Venous Insufficiency was evident with reflux in the internal Jugular vein at 0 and 90 degrees. The cross sectional areas of the internal jugular vein at 90 degrees is larger than the cross sectional area at 0 degrees resulting in a negative delta (positive result). B mode abnormality noted


Findings left Jugular
The cerebral venous outflow appears patent with no evidence on venous thrombosis. Venous Insufficiency was evident with reflux in the internal Jugular vein at 0 and 90 degrees. The cross sectional areas of the internal jugular vein at 90 degrees is larger than the cross sectional area at 0 degrees resulting in a negative delta (positive result). B mode abnormality noted

CONCLUSION
Venous reflux/insufficiency is noted in the internal jugular veins on the right and left at 0 and 90 degrees. positive values for cross sectional area of the internal jugular veins on the right and left B mode abnormalities noted bilaterally.
Criteria met for CCSVI:3/5

what is venous thrombosis ?
what I dont understand is what veins both right ?
What is the cross sectional area ?
Some people post that there veins are 70% 80% 90% closed how do you come up with that number
this would mean what dr. resulting in a negative delta (positive result). B mode abnormality noted ?

Any help would be appreciated Dr.

thanks a head of time

[Motiak]

*********

Dr. Sclafani,
I'm not sure I'm doing this quote thing correctly. Please bear with me.
The quote below is from the Essential Health Centre in the UK. They're going to open up more CCSVI scanning and treatment centers to meet the growing demand. It looks like what they are planning is similar to your IRB approval request . Am I right on that? Do you think this could help our efforts in the US?


We are planning to collect data on all those we treat as part of a formal research project that requires ethics research approval and we are currently working on achieving this as quickly as possible. These requirements will mean that actual interventions may be slightly delayed, however we will be opening more appointments for the months of September and October to people on our waiting list. We still anticipate seeing and treating everyone on our waiting list before the end of the year and this could be even sooner once we have multiple sites in place.

Laura, you just need to start with quote and end with the /quote instead of starting with /quote and ending with quote like you did. That should get the quote working properly.

[cah]

Dear Dr. Sclafani,

there's a another site in germany where CCSVI diagnosis and treatment is offered, in Offenbach (very near to Frankfurt, almost like a suburb). They recently put up a website: www.ccsvi-center.de (also www.ccsvi-center.com , but the english version isn't finished yet, almost empty. And ccsvi-frankfurt.de, which is a bit confusing as they aren't exactly located in Frankfurt, but Dr. Vogl is). They say that they "have established a network of partners" for diagnosis and therapy with these physicians ( http://www.ccsvi-center.de/Diagnostik.htm ):

Prof. Dr. med. Horst Sievert, CardioVasculäres Centrum Frankfurt (CVC) Deutschland

Ducksoo Kim, MD, Professor of Radiology, Boston University Medical Center, Boston USA

Dr. Salvatore J.A. Scalfani, MD, Professor of Radiology, SUNY Downstate Medical Center, New York, USA

David A. Koff, MD, Professor of Radiology, McMaster University, Hamilton, Ontario, Canada

Adnan H. Siddiqui, MD, PhD, Assist. Professor of Neurosurgery, University of Buffalo, New York, USA

On this site they also say that they have improved the Haacke protocol like this (hope I'm translating this right):

1. Combination of fast MRV in breath-holding technique (vasalva maneuvre?) followed by slow MRV in breath-holding technique for the lower neck and upper chest
2. Flow visualization along the IJV
3. Flow visualization of the azygous vein on the passing to the superior vena cava
4. Improved MRV of the chest and torso veins in equilibrium phase with repeated breath-holding technique

My questions are:

- How does this partnership with you and the other physicians look like?

- Would you recommend going there? (If someone has made the general decision for CCSVI diagnosis and treatment, that is)

- What do you think about the improvements to the Haacke protocol? Does this make sense to you?

I'm partly asking this because two of the members of the german ccsvi forum went there and weren't very satisfied (seems that they made the right "pictures" but then draw the wrong conclusions of it).

Again a big thank you

Cah

Oh and, what the heck is the equilibrium phase? ;)