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Re: DrSclafani answers some questions

PostPosted: Mon Aug 05, 2013 4:06 pm
by Rosegirl
Hi, Dr. Sclafani,

Is there any data that compares symptoms to blocked areas that are treated? Any data that shows what symptoms are likely to be changed by a venoplasty? I get the impression that "head symptoms", i.e., vision problems, headaches and cog fog are likely to respond well to treatment. But how about balance and gait issues?

And if the data exists, where is it coming from? Is there a central international registry that looks at these issues or are we still just looking at data collected by individual doctors? Is there any consensus yet as to how procedures should be done?

Thanks!

Re: DrSclafani answers some questions

PostPosted: Mon Aug 05, 2013 10:01 pm
by Cece
Robnl wrote:Hi doc,

Any new cases?

Regards,

Robert

Robert, what a great kickstarter.
:appreciation:

Re: DrSclafani answers some questions

PostPosted: Tue Aug 06, 2013 1:30 am
by Robnl
Cece wrote:
Robnl wrote:Hi doc,

Any new cases?

Regards,

Robert

Robert, what a great kickstarter.
:appreciation:


Cece,

Sometimes you feel something is in the air.......luck :mrgreen:

Re: DrSclafani answers some questions

PostPosted: Tue Aug 06, 2013 7:22 am
by newlywed4ever
I had asked you whether small IJVs can be catheretized earlier. Today, I'm reading an article that claims small IJVs are related to MS severity. What are your thoughts?
http://www.msdiscovery.org/news/new_fin ... n=addtoany

Re: DrSclafani answers some questions

PostPosted: Tue Aug 06, 2013 10:12 pm
by drsclafani
Lety wrote:Dear Dr. Sclafani

as you know, my jugular vein was difficult to treat and had suffered restenosis. A few days ago I was confirmed a compression of the muscle omoiodeo that compromises the vein. What does you think about it? When you do the ECD now do you investigate on this muscle and a possible compression? What would you do in this case, I have been informed that the muscle must be reciso to decompress the vein.
I had written in private, but I think it's an interesting question for all

(Sorry but my English still needs improvement)

Sincerely yours

Lety

Letty, at the current time, I think there is insufficient data to offer a solid recommendation regarding muscle entrapment. I have read a few case reports and anecodatal information.But i havent seen great outcomess In my experience many of these compressions are transient, meaning that they are not persistent 100% of the time.

Perhaps I have missed some reports. Does anyone have more information other than a few case reports and very small series (zamboni, Simka)

Re: DrSclafani answers some questions

PostPosted: Tue Aug 06, 2013 10:14 pm
by drsclafani
newlywed4ever wrote:Can IJVs be too small for angioplasty?

absolutely

small veins tend to rupture is stretched too much. There was a suggestion that gradual dilatation could mature such a hypoplastic vein but it is not feasible in our current environment.

DrS

Re: DrSclafani answers some questions

PostPosted: Tue Aug 06, 2013 10:22 pm
by drsclafani
Rosegirl wrote:Hi, Dr. Sclafani,

Is there any data that compares symptoms to blocked areas that are treated? Any data that shows what symptoms are likely to be changed by a venoplasty? I get the impression that "head symptoms", i.e., vision problems, headaches and cog fog are likely to respond well to treatment. But how about balance and gait issues?

And if the data exists, where is it coming from? Is there a central international registry that looks at these issues or are we still just looking at data collected by individual doctors? Is there any consensus yet as to how procedures should be done?

Thanks!



There are some urban "legends" that correlate balance and lower extremity issues with azygous problems but i havent bought into that one.
The symptoms that are most commonly improved include visual disturbance, cranial nerve, cognitive impairment, short term memory problems, temperature intolerance, imbalance, fatigue and urinary urgency. sensory deficits less likely improved, motor less likely to be improved spasticity less likely

There is no central registry although zamboni attempted one in 2010.

The data comes from the safety trials that have taken place. In addition to showing a good safety profile, these studies documented clinical improvements

There is no consensus on how to do the procedure.

Re: DrSclafani answers some questions

PostPosted: Tue Aug 06, 2013 10:36 pm
by drsclafani
newlywed4ever wrote:I had asked you whether small IJVs can be catheretized earlier. Today, I'm reading an article that claims small IJVs are related to MS severity. What are your thoughts?
http://www.msdiscovery.org/news/new_fin ... n=addtoany



ok, here goes

i think it fair to say that the use of ultrasound to determine the presence of ccsvi has been shown to be highly unreliable as a general tool. Unless strenuously trained by experts and performed by a rigid technique, ultrasound is too operator dependent to provide reliable data to address the question of whether ccsvi is present in MS.

Venography alone is also inadequate because it is a poor evaluator of intraluminal pathology such as abnormal valves, webs, septa and membranes. It is my personal experience that IVUS provides more information. Additionally, it appears that, for some inexplicable reason, measurement of cross sectional area by external ultrasound tend to be smaller than measurements by IVUS.

I think that the largest veins are generally, but now always, present in patients with the most severe disease. Also valve thickening tends to be greater in patients with long standing disease. the valves are more difficult to visualize in young people.

Re: DrSclafani answers some questions

PostPosted: Wed Aug 07, 2013 9:24 am
by Cece
drsclafani wrote:I think that the largest veins are generally, but now always, present in patients with the most severe disease. Also valve thickening tends to be greater in patients with long standing disease. the valves are more difficult to visualize in young people.

Just to verify, did you happen to mean smallest veins?
Does valve thickening increase with long-standing disease in other patient populations? Heart valves are well studied, even if vein valves are less well studied.

Re: DrSclafani answers some questions

PostPosted: Wed Aug 07, 2013 9:33 pm
by drsclafani
Cece wrote:
drsclafani wrote:I think that the largest veins are generally, but now always, present in patients with the most severe disease. Also valve thickening tends to be greater in patients with long standing disease. the valves are more difficult to visualize in young people.

Just to verify, did you happen to mean smallest veins?
Does valve thickening increase with long-standing disease in other patient populations? Heart valves are well studied, even if vein valves are less well studied.

cece
i did not mean smallest veins. Generally the largest veins are seen in the most severe disease although I do not think there is a good correlation between vein size and degree of disability.

For example I have seen a 20 mm vein in a young woman with early disease. Other things cause large veins too. trumpet playing singers to name two.

The enlargement of the vein seems to be in many patients related to the length of time and the degree that the valves have been stenotic.

I do not want to make a comment about comparison of veins in MS to other diseases because i just havent seen sufficient numbers of patients with other diseases.

DrS

Re: DrSclafani answers some questions

PostPosted: Thu Aug 08, 2013 1:10 am
by Lety
drsclafani wrote:
Lety wrote:Dear Dr. Sclafani

as you know, my jugular vein was difficult to treat and had suffered restenosis. A few days ago I was confirmed a compression of the muscle omoiodeo that compromises the vein. What does you think about it? When you do the ECD now do you investigate on this muscle and a possible compression? What would you do in this case, I have been informed that the muscle must be reciso to decompress the vein.
I had written in private, but I think it's an interesting question for all

(Sorry but my English still needs improvement)

Sincerely yours

Lety

Letty, at the current time, I think there is insufficient data to offer a solid recommendation regarding muscle entrapment. I have read a few case reports and anecodatal information.But i havent seen great outcomess In my experience many of these compressions are transient, meaning that they are not persistent 100% of the time.

Perhaps I have missed some reports. Does anyone have more information other than a few case reports and very small series (zamboni, Simka)




Hello dr. Sclafani

Thank you for your answer, I don`t have case reports other than (zamboni, simka ) http://www.ccsviitalia.org/7/post/2013/ ... bilia.html , but I know that dr. Pippo Cacciaguerra and dr. Pierfrancesco Veroux, Catania are study and treating this problem. Maybe you could contact these doctors and ask for concrete results ?
Your opinion is always important for me :smile:

Re: DrSclafani answers some questions

PostPosted: Thu Aug 08, 2013 1:51 am
by CureOrBust
drsclafani wrote:It is my personal experience that IVUS provides more information. Additionally, it appears that, for some inexplicable reason, measurement of cross sectional area by external ultrasound tend to be smaller than measurements by IVUS.
Could the catheter be affecting the blood flow and thereby the extension of the vein?

Re: DrSclafani answers some questions

PostPosted: Sat Aug 10, 2013 9:45 pm
by julu
Hello Dr. Sclafani, you have been very helpful to me over the past few years as the thinking on CCSVI and its treatment has been evolving. Thank you for all the time you give to this forum.

My question involves the current thinking on MRV's usefulness in diagnosing CCSVI. I know that venogram with IVUS is the best, but I'm not ready to take that step yet. My neurologist has ordered an MRI for me since I recently had my first relapse in four years (she does not think CCSVI has a relationship to MS). My internal medicine doctor is intrigued by CCSVI and is willing to order an MRV as an add-on to the MRI if it might give important information.

Would the MRV be likely to give information that could help my internist see what is going on inside my head? (I have a constant pressure sensation, and dizziness with turning my head in any direction, as well as brain fog which is getting worse.) I would like to have him on board when I take the next big step.

Also, if we proceed with MRV, is it important to ask that the Haacke protocol be followed?

Thank you so much for your advice.

Re: DrSclafani answers some questions

PostPosted: Mon Aug 12, 2013 10:07 pm
by drsclafani
Lety wrote:
drsclafani wrote:
Lety wrote:Dear Dr. Sclafani

as you know, my jugular vein was difficult to treat and had suffered restenosis. A few days ago I was confirmed a compression of the muscle omoiodeo that compromises the vein. What does you think about it? When you do the ECD now do you investigate on this muscle and a possible compression? What would you do in this case, I have been informed that the muscle must be reciso to decompress the vein.
I had written in private, but I think it's an interesting question for all

(Sorry but my English still needs improvement)

Sincerely yours

Lety

Letty, at the current time, I think there is insufficient data to offer a solid recommendation regarding muscle entrapment. I have read a few case reports and anecodatal information.But i havent seen great outcomess In my experience many of these compressions are transient, meaning that they are not persistent 100% of the time.

Perhaps I have missed some reports. Does anyone have more information other than a few case reports and very small series (zamboni, Simka)




Hello dr. Sclafani

Thank you for your answer, I don`t have case reports other than (zamboni, simka ) http://www.ccsviitalia.org/7/post/2013/ ... bilia.html , but I know that dr. Pippo Cacciaguerra and dr. Pierfrancesco Veroux, Catania are study and treating this problem. Maybe you could contact these doctors and ask for concrete results ?
Your opinion is always important for me :smile:


I have made contact with Dr Cacciaguerra. But august is a difficult month and dr cacciaguerra was on vacation. he sent me some slides but there wasnt anything substantive on it.

i look forward to analyzing and critiqueing this concept.

Re: DrSclafani answers some questions

PostPosted: Mon Aug 12, 2013 10:08 pm
by drsclafani
CureOrBust wrote:
drsclafani wrote:It is my personal experience that IVUS provides more information. Additionally, it appears that, for some inexplicable reason, measurement of cross sectional area by external ultrasound tend to be smaller than measurements by IVUS.
Could the catheter be affecting the blood flow and thereby the extension of the vein?


i dont think so. I just think IVUS is more accurate