DrSclafani answers some questions

[drsclafani]

Dr. Sclafani,
How long do you think the collateral veins remain viable? I mean after they have stopped filling because the blockage in the jugular is fixed, will they forever be there ready in case the blockage happens again or will they stay permanently closed at some point?
Thanks!
Rhonda

most will just get smaller but remain
others may clot off if there is no blood going through them

i would bet that most will just get smaller but be ready and able should they be needed again

[SandyK]

Hi Dr. I am most concerned with the size of the balloon and how much time it is left in the vein. Is bigger better Maybe in this case it is. Thank you.

[1eye]

I am sorry but i am preparing for the northern ireland debate

excuses, excuses...
...

indications for stenting, anticoagulation standardization, followup imaging type of frequency, size of balloons, indications to treat, etc

so what exactly are you guys interested in us studying as it relates to the treatment of ccsvi

All of the above, plus:

Use of DUS in angioplasty: what can be detected that otherwise can't?
Catheterization starting in the left femur, reasons for that.
Other forms of CCSVI, May-Thurner, Budd-Chiari, any other hyphenated problems.
A treatment protocol for the Liberation procedure.
Requirements for assistance and experience using the protocol, for:
Certification for the Liberation procedure.
X-ray angles used in this protocol.
Problems with the Azygous vein, and restenosis rates.
Other tools: balloon sizes (OK, I stole that one), cutting balloons.
Stenosis testing with balloons.

[NHE]

I am sorry but i am preparing for the northern ireland debate

Please understand that the group that will assemble to address ccsvi treatments in the society of interventional radiology will discuss areas of concern, research need and design, and similar topics related to ccsvi, not ms

so, for example, i would want to evaluate

indications for stenting, anticoagulation standardization, followup imaging type of frequency, size of balloons, indications to treat, etc

so what exactly are you guys interested in us studying as it relates to the treatment of ccsvi

Some time ago, I read an article about a new scanning technique that used IV infrared imaging (if I remember correctly). The resultant image looked almost like a photograph of the inside of the vessel. Do you think that this IVIR imaging would be of benefit to CCSVI diagnostics?

Note that I've searched far and wide for the article, but can't find it again. I know that it came out within the last year. Perhaps someone hear posted it? A link would certainly be appreciated.

NHE

[Rosegirl]

Hi, Dr. S.

It would also be helpful to learn if there's a correlation between where a problem (stenosis, etc.) is located and symptoms. Then it might be possible to see if/how treatment affects those symptoms.

[Sotiris]

...

Some time ago, I read an article about a new scanning technique that used IV infrared imaging (if I remember correctly). The resultant image looked almost like a photograph of the inside of the vessel. Do you think that this IVIR imaging would be of benefit to CCSVI diagnostics?

Note that I've searched far and wide for the article, but can't find it again. I know that it came out within the last year. Perhaps someone hear posted it? A link would certainly be appreciated.

NHE

http://www.lightlabimaging.com/
http://www.lightlabimaging.com/download ... 050510.pdf
http://en.wikipedia.org/wiki/Optical_co ... tomography

[nancymno]

Hi, Dr. S.

It would also be helpful to learn if there's a correlation between where a problem (stenosis, etc.) is located and symptoms. Then it might be possible to see if/how treatment affects those symptoms.

I agree. Is it possible to start putting things together so a person might have some idea if the procedure will give them any improvement? Is there some connection between the people who have seen the most improvement and some connection between the people who have seen no improvement?

[nicknewf]

....
so what exactly are you guys interested in us studying as it relates to the treatment of ccsvi

IMHO, and in order of precedence:

1. Standard protocols for the venography: (i) order of veins; (ii) catching the flaps; (iii) indications for treatment.

2. Protocols for stents versus not;

3. Protocols for follow up care - standard 3 month, or 6 month venography (or something else) - like they do for angioplasty;

4. Stents designed especially for these troublesome veins;

5. Stent replacement;

6. Vein replacement;

7. Valve repair instead of valvectomy.


Charm the socks off them in Scotland - i.e. Kick ass in your debate!

[fogdweller]

The list is pretty long and vey comprehensive!! If you guys get through 1/2 of the stuff already mentioned, it would be amazing.

The only thing that I don't remember seeing specifically mentioned was protocol for using anti-clotting drugs post procedure.

[elliberato]

Dr S,
Here are a few things I struggle with that I would like to see evaluated by the IR's in relation to CCSVi.

Congenital -vs-acquired
Could something be causing this stenosis other than in-vetro. Very vague I know but even Simkas research shows an enormous variance with age and stenosis. If its congenital why would it get worse as one ages???

Septums, valve issues, lumbar veins. How are these contributing to CCSVI and since the body is so good at compensating for abnormalities why then cant collaterals handle the load. How will you treat a septum or an underdeveloped lumbar vein???

Why is the dominant etiology seen in the major draining veins IJV's and azygos? What gives?

Why is there such a variant in treatment outcomes. If one has a bladder infection and takes antibiotics the infection typically abates. Why when one is angioplastered one guy gets dramatic increase in blood flow and the next gets squat.

SInce we arent talking about MS, why are we seeing these CCSVI clusters showing up further from the equator, or are healthy subjects stenosed and not showing neurological deficit?

So many questions...so little time...as far as patients my patience my neurologicl clock is going so fast its panic mode...thanks for all your hard work and dedication.

[aliyalex]

good word angioplastered. we must give you credit.

[NZer1]

Training/ courses/ tutoring for testing and treatment for international Radiographers and IRs, a standardised program so that we (PwMS) can trust the results we are given.
An introduction letter or presentation CD to give to National Health providers to help get testing and then treatment underway. Something coming from SIR would be respected whereas from me it is laughed at.
Research results that can be used to progress the CCSVI treatment being implemented world wide.
Team of Radiologists and IR's who can travel and train groups around the globe.
Study opportunities for research people to further the cause.
Inter linking with other specialties so that the wider aspects of CCSVI can be understood, for instance the work of Dr. Flanagan on cranial and spinal blood flows which are also effecting brain drainage.
Opportunities for up and coming IR's to become involved in MS and CCSVI learning.
And tomorrow I'll have a few more, these should be done by morning, shouldn't they?
Regards Nigel

[NZer1]

A list of areas that researchers can use look into the unknowns of treatment outcomes.
For instance why some have benefits on the theatre table and others progressively have benefit and others none.
The improvements gained by treatment of particular areas/veins.
Measure the flow of blood above the areas accessible for treatment to show the cause of reduced flow at the treatable areas.
Understanding of the cranial and spinal cord flows and their impact on CCSVI as it is currently understood.
Understanding the CSF flow and how it is influenced and influences CCSVI flows.
This one is very important and would need to be internationally transferable and cost effective;
A system of assessing before and after treatment so that symptom changes can be analyzed and recorded for global benefit to PwMSer's.
I'll finish this list after my brain fade subsides, thanks for now.
Regards Nigel

[NZer1]

Ashton Embry has said elsewhere that the CCSVI progress is showing that the MS implication is multifactorial;http://www.thisisms.com/ftopict-13865.html
I now prefer to see MS as including an immune dysregulation rather than a specific autoimmunity. Possibly up to 20% of the population is born with venous malformations which result in CCSVI. Another smaller group of the population (1% ?) ends up with an immune dysregulation due to gentic susceptibity and environmental factors such as a virulent EBV infection during a time of low vitamin D and an overall poor immune education due to ultra-hygienic conditions.
Those with both CCSVI and acquired immune dysregulation (perhaps .2% of the population [1% of 20%]) get MS because CCSVI opens up the BBB and once the immune system gains access to the CNS, the immune dysregulation results in a poorly controlled immune/CNS interaction and ongoing damage. Other factors related to CCSVI can explain accompanying neurodegeneration.
Such a model explains all the known genetic, immunological, epidemiological observations as well as the postulated environmental factors of MS and also explains the presence of CCSVI in (almost) all cases. The bottom line is we need a disease model that factors in all we know about MS.
===============================================
At the gathering of IR's, Dr. Scalafani I think it will be necessary to begin a process of sharing and corroborating across specialities for progress to continue with your work in CCSVI.
A request from IR's to other Specialties to collectively work on this project would be timely, IMO.
Regards as always, Nigel

[Cece]

so what exactly are you guys interested in us studying as it relates to the treatment of ccsvi

I remember this line of thinking:

To date I have seen the following: In most patients they are mixed

1. Anomalous confluens of jugular vein
2. Absent Jugular vein
3. annular stenoses
4. hypoplasia, isolated
5. hypoplasia, multiple tandem
6. duplications with stenosis
7. reversed valve
8. incomplete or fused valve leaflets
9. misplaced valve
10. false channels (may be incomplete jugular duplication)
11. webs
12. indentations/impressions
13. abnormal drainage of external and vertebral veins

So variation is the rule.

Not to be simplistic, but identifying every variation of CCSVI and standardizing the names still needs to be done?