DrSclafani answers some questions

MrSuccess · Post by **MrSuccess** » Thu Aug 04, 2011 4:56 pm

Dr. Sclafani , have you performed CCSVI intervention on any pwMS that have not been on and are not on any DMD's ?

Mr.Success

bestadmom · Post by **bestadmom** » Thu Aug 04, 2011 5:09 pm

Mr. Success,

I was told by my neuro to stop Tysabri the month of my first procedure with Dr. S in 12/09. I'm sp and nothing kept me from progressing. I've had 2 subsequent procedures, 6/10 and 4/11, as Dr. S has refined his techniques, and have remained stable for almost 2 years.

Michelle

Cece · Post by **Cece** » Thu Aug 04, 2011 7:37 pm

That's a great question, MrSuccess.

I don't qualify, I was on Copaxone in the past although I discontinued six months before my procedure.

MrSuccess · Post by **MrSuccess** » Thu Aug 04, 2011 8:23 pm

that is the kind of news I like to hear , Michelle. I am very happy for you.

Cece , I ask that question , as I think it is an important missing part of the CCSVI-MS puzzle.

As it stands ... Big Pharma - could - make a great argument that any improvements are actually ........ the result of their DMD's.

There needs to be a - DMD free -component of any future trial ..... and by that I mean pwMS who have never used any DMD.

Not .... so-called healthy controls .

This will truly give a clearer picture .

Off course .... the placebo effect ..... must be factored in .... right Marc?

Mr.Success

sou · Post by **sou** » Thu Aug 04, 2011 9:48 pm

This question crosses my head from time to time. I am not on any DMD's 6.5 years now and I hope I am going to have the procedure sometime in the near future.

I am happy about my choice, back in 2005, not to take mitoxantrone without knowing whether MS were autoimmune or not and live with the risk of heart disease and leukemia for the rest of my life.

Does chemo have a negative effect on the wall of the veins of interest in CCSVI?

Hopeful10 · Post by **Hopeful10** » Thu Aug 04, 2011 10:14 pm

Dr. Sclafani,

If I remember correctly, approximately 10% of the population doesn't have valves in their internal jugular veins. Since problematic valves seem to be a primary cause of CCSVI, I was wondering if you've had any CCSVI patients without IJV valves, and if so, if they number less than 10% of your total group of CCSVI patients?

Many thanks....

HappyPoet · Post by **HappyPoet** » Fri Aug 05, 2011 8:43 am

Hi Dr. Sclafani,

The last case of yours showed how venous blood due to an IJV valvular stenosis on one side can reflux to the Transverse Sinus on the opposite side. I'm curious about refluxed blood that goes even farther--down through the Vertebral Venous system.

As you know, one of Dr. Schelling's theories is that the lowest spinal cord lesion will be at the lowest spinal cord level where such reflux stops. My first spinal lesion was at T5, sensory fibers only, and over the past five years, the lesion has elongated downward through T9, still sensory fibers only (which explains why I am still ambulatory but am in MUCH PAIN).

Per you and IVUS, my Azygos vein is fine, so CCSVI theory doesn't seem to be the explanation for my spinal lesions. I'm wondering if Dr. Schelling's theory explains better than the autoimmune theory or CCSVI theory the primary reason why the lesion grew only downward and did not grow across the cord into motor fibers. What are your thoughts on Dr. Schelling's theory and my thoughts about it?

What imaging modalities can show how far down the Vertebral Venous Plexuses refluxed blood travels?

Thank you!

Cece · Post by **Cece** » Fri Aug 05, 2011 8:50 am

Not only are there 10% with no IJV valves but there may be a high percentage who have just one IJV valve:

In this study we examined 462 internal jugular veins by using an echocolorodoppler apparatus. In particular, we assessed the presence, morphology and competence of valves at their ostium. Unilateral jugular vein valves were present in 406 cases (88%), mainly on the right side. The most frequently observed morphology (75%, 305 cases) was the two-leaflet valve, and jugular vein valves were incompetent in the huge majority of cases (365 cases, 90%).

http://ejour-fup.unifi.it/index.php/ija ... /9073/8407

I am not sure if this research is accurate, the numbers seem high. But I would be curious also to know how many patients Dr. Sclafani has seen with valves in only one of their two jugulars.

Someone asked about tricuspid valves (NHE, I am guessing) but this mentions that the majority of IJV valves are bicuspid. The third leaflet is not missing on the IVUS because there is no third leaflet....

mag00 · Post by **mag00** » Fri Aug 05, 2011 9:50 am

Hi,

Dr. Sclafani performed my CCSVI intervention back in December 2010.
I currently have SPMS, for approximately 2 years. RRMS since 1989.

I have never taken any of the DMDs.

I'm doing very well since the procedure. My EDSS score went from
3.5 to 1.5. (Tested ~2 months post procedure).

Now I'm doing a daily exercise routine in hopes of keeping my veins open. (Jillian Michaels' Fitness Ultimatum 2011 for Wii)

Thank you Dr. Sclafani.

MrSuccess · Post by **MrSuccess** » Fri Aug 05, 2011 10:27 am

thanks magOO ..... I do hope Dr.S and all other CCSVI interventionalist's follow your medical file with great interest.

To go from 3.5 to 1.5 ...... is so encouraging for the procedure.

Big Pharma cannot make any claims for your improvements.

Nor any "placebo effect " believer's ...... SP > RR

....... wonderful !

You made my , and I'm sure others .... day.

I do hope others like yourself ..... chime in on this one.

Mr.Success

dlb · Post by **dlb** » Fri Aug 05, 2011 12:55 pm

mag00 wrote:Hi,

Dr. Sclafani performed my CCSVI intervention back in December 2010.
I currently have SPMS, for approximately 2 years. RRMS since 1989.

I have never taken any of the DMDs.

I'm doing very well since the procedure. My EDSS score went from
3.5 to 1.5. (Tested ~2 months post procedure).

Now I'm doing a daily exercise routine in hopes of keeping my veins open. (Jillian Michaels' Fitness Ultimatum 2011 for Wii)

Thank you Dr. Sclafani.

mag00,
Thanks for sharing! Congratulations.... 3.5 to 1.5.... makes my heart skip a beat. So exciting!

MrSuccess - such a good question - so many puzzle pieces to MS & it seems that this puzzle box was dumped so that all the pieces are up-side down! Maybe that is why the MS puzzle isn't coming together very fast!

PointsNorth · Post by **PointsNorth** » Fri Aug 05, 2011 2:37 pm

MrSuccess wrote:thanks magOO ..... I do hope Dr.S and all other CCSVI interventionalist's follow your medical file with great interest.

To go from 3.5 to 1.5 ...... is so encouraging for the procedure.

Big Pharma cannot make any claims for your improvements.

Nor any "placebo effect " believer's ...... SP > RR ....... wonderful !

You made my , and I'm sure others .... day.

I do hope others like yourself ..... chime in on this one.

MagOO,
I'm on deck with Dr.S tomorrow and I seem to have a very similar profile to your own. MS since 2003' SP for last 2yrs. Out of the gate I didn't think DMDs offered anything . . . Hoping to have your luck!
PN
Mr.Success

NZer1 · Post by **NZer1** » Fri Aug 05, 2011 4:26 pm

HappyPoet wrote:Hi Dr. Sclafani,

The last case of yours showed how venous blood due to an IJV valvular stenosis on one side can reflux to the Transverse Sinus on the opposite side. I'm curious about refluxed blood that goes even farther--down through the Vertebral Venous system.

As you know, one of Dr. Schelling's theories is that the lowest spinal cord lesion will be at the lowest spinal cord level where such reflux stops. My first spinal lesion was at T5, sensory fibers only, and over the past five years, the lesion has elongated downward through T9, still sensory fibers only (which explains why I am still ambulatory but am in MUCH PAIN).

Per you and IVUS, my Azygos vein is fine, so CCSVI theory doesn't seem to be the explanation for my spinal lesions. I'm wondering if Dr. Schelling's theory explains better than the autoimmune theory or CCSVI theory the primary reason why the lesion grew only downward and did not grow across the cord into motor fibers. What are your thoughts on Dr. Schelling's theory and my thoughts about it?

What imaging modalities can show how far down the Vertebral Venous Plexuses refluxed blood travels?

Thank you!

This has my full attention. As as person PPMS this is the defining question from my point of veiw.
There are so many things that we all want answers for and so little data to guide any insights.
The involvement of the Vertebrals is like the next frontier and I am looking forward to Dr. Zamboni's input here.
It would seem that the rapid re-stenosis of the flow in the IJV's does point to a similar effect as relapse in RRMS.
An underlying insufficiency in other areas being the cause of the continuing progression in any form of MS.
The region of symptom expression (affected area of the body) is linked to the blood flow insufficiency upstream and within the brain at capillary level of blood movement.
The finer points of the symptom expression also lies in the neurological junction points such as the Hypothalamus and Thalamus which can effect multiple sensory and motor systems in a small region of the brain.
The additional factors that make the disease harder to piece together are the co-incidental or mathematical commonalities that occur. The diet, trauma, genetic or hereditary origin, position on the planet lived prior to the age of 15/16 years and many other issues that have been presented and no doubt many more will be linked but not actual cause factors. Most of these factors are the personal make up that will effect the underlying disease mechanism but not be necessary for any one person to be effected by the disease, especially when time is factored into the individual persons disease pattern.
Blood appears to be the most common factor is the disease and in what way it will determine the disease expression is the million dollar question.

Could it be time to focus on individual cases and find the common ground?

Is there enough data being collected by the IRB approved service providers?

Is there enough discussion between IR's to get profiles happening that can be used to learn more?

Is there a need for support for the work the IR's are doing that will collect information that can be used across the centers performing treatments?

Is there research 'people' available to design and define what needs to be collected and followed up?

Are the MS Societies (Internationally) getting on side with the IR's and using the opportunity to advance the knowledge either way?

For those that have been treated is there things that could be fed back to IR's/MS Societies/Neurologists/Researchers any group that can advance the learning?

Most of all I am impressed the effort that Dr. S has made and continues to make for us all. I believe he could be supported better by us the PwMS.

Dr.S and other Dr.s for that matter, is there things we can be doing to help? Or stop doing as well if there are things we need to hear as well?

Nap time, that took 'it' out of me, enjoy your day,
Nigel

drsclafani · Post by **drsclafani** » Fri Aug 05, 2011 4:50 pm

Cece wrote:
Maybe it is time for another case to be posted? It has been at least a few days. Or should we talk more about the balloon-CSA post?

it is difficult to present cases if there are none scheduled.

Today i treated two patients, both are incredible illustrations.

it takes quite a bit of time to prepare these cases but look forward to some tonite or tmorrow

Cece · Post by **Cece** » Fri Aug 05, 2011 4:52 pm

PointsNorth wrote:MagOO,
I'm on deck with Dr.S tomorrow and I seem to have a very similar profile to your own. MS since 2003' SP for last 2yrs. Out of the gate I didn't think DMDs offered anything . . . Hoping to have your luck!
PN
Mr.Success

I almost missed this one inside the other quote. Wishing you the best tomorrow.

Mag00 and bestadmom, it's great to read how well both of you are doing.