DrSclafani answers some questions

[drsclafani]

Any thoughts on kissing balloons? Is it that two balloons are inserted into two different veins and then when they are both inflated, the second balloon helps by...?

kissing balloons are two balloons in the SAME vein. thus effectively increasing the diameter of the dilatation. Putting in a double sized balloon has the drawback that lower pressure is generated. Putting in two balloons in increases diameter but without sacrifice of lower pressure

[Algis]

Another quick question; if I may:

A vein that is not "responding" to ballooning (instant multiple restenose etc...) should be a better candidate for stent isn't it? Since it 'naturally' collapse and squeeze the vein; it shall much easily 'integrate' the stent in the wall?

Thank you for your time

Algis

[adamt]

Hi Dr S and others,

After a false negative catheter Venogram - Dr S said here was CCSVI when i sent him the images, i am now going to Poland for new testing (doppler/MRV) and treatment

But dr S said i had May Thurners too, so what do i ask or request my doctor to do for the procedure?

do i just ask them to enter via the left illiac vein?

how can i persuade them too, as i read its more difficult for them to enter through the left

thank you

Which dr S, and which Poland doctor?

i meant Dr Sclafani, and its in Ameds centrum, dont know the doctor yet

thanks

[Needled]

Dr. S wrote:

the video is completed and was sent to L who is doing some sound engineering to improve quality of the speakers voices (the quality of their ideas and presentations was first class)
not sure how long it will take. it might be superfluous now. things move so fast in ccsvi

Please Dr. S, finish the video if you can. It will not be superfluous. Although things are moving quickly, there are so many people who didn't get a chance to see the symposium. It was such a great event. The video will be a wonderful learning tool, and I have a list of people who are waiting for it. Thanks to both you and L for working on it.

[Algis]

RE: the symposium video from girlgeek

I am still downloading it (75%~) - it is a real pain since "I" am limited to 500MB "per passport" which seems to last for 36 hours. It will not take credit card from my area...

When finish I'll need to work on the sound issue; then factor it to an FLV and have it up in some of the MOD websites such as UStream or Justin.

Thanks for your patience

[JaneM]

This discussion is irrelevant. I do not treat MS, I treat ccsvi and its symptoms

like fatigue.....any neurologists know what causes it? or how to treat it?

it is one of the consistent improvements that patients describe.

To take this literally:
Neurologists have offered a couple suggestions for what causes the fatigue.
1) it's a result of the lesions and the brain having to work with less than optimal pathways
2) it's a result of the inflammation of the brain
3) it's a result of depression either organic due to the brain damage or emotional from the difficulty of living with MS

BUT
1) fatigue is not correlated with number of lesions, which it should be if #1 were true
2) well, that's a decent point, I think?
3) also a good point?

So I don't think we can throw out the neurologist's ideas on fatigue altogether, because those second two ring true (I think?)...but there is plenty of room there for CCSVI to be #4 on the list and the biggest one of all.

Point 2 sounds possible - but the questions remains what is causing the lesions and inflamation? Possibly something to do with blood flow. Item 3 concerns me because of the possible varying descriptions of fatigue. When I have the fatigue that I attribute to MS I feel like I am wading through quick sand. Lately it has gotten more severe and it feels like I am pulling the Empire State Bldg through quick sand.

Is it possible "MS fatigue" is a catchall for many different situations and is that why some people do not see improvement in their fatigue after the procedure?

And maybe my fatigue is CCSVI fatigue! Is there a list of symptoms for CCSVI?

[Cece]

these cutting balloons are not exactly like specialized japanese cooking knives.

Now that's funny. A little humor & encouragement along the way....

And maybe my fatigue is CCSVI fatigue! Is there a list of symptoms for CCSVI?

Here is how Dr. Sclafani defined it in the announcement for the ccsvi symposium recently held:

CCSVI is a condition in which the main cerebrospinal venous outflow routes are obstructed, leading to symptoms of fatigue, headaches, weakness and cognitive dysfunction. The association of CCSVI with Multiple Sclerosis has been described and confirmed.

[MS_HOPE]

Edited quote from Dr. Sclafani:

“I have been wrestling with a momentous personal decision all week.

I have stepped down as chief of radiology to dedicate my attention on CCSVI.”


Wow.

Dear Dr. Sclafani,

You are our champion, in every sense of the word. Through you, we people with MS, and our caregivers, have been truly heard. In you, we have a knowledgeable, caring, powerful, truth-telling voice. With you, we have hope of a better future. I can only speak for myself, but believe many others feel the same way. Your commitment to making a difference in the lives of persons with multiple sclerosis is an unimaginable gift to us. And we are so deeply thankful for you and to you.

Eleven years ago, when our eight-year-old daughter faced a daunting months-long hospitalization and difficult year-long recovery, her doctor exhorted my husband and me to be her champions. We understood him to mean that we would continuously and diligently look out for her best interests, be her spokesperson, be assertive in ensuring her needs were met, thinking, questioning, working on her behalf. For she was our singular concern, one very ill little girl out of thousands of hospital patients tended by scores of doctors, nurses, technicians. We took our charge seriously, and would like to think we played a significant role in her successful outcome.

I know you sorely miss the ability to treat patients with CCSVI right now, and for that reason, and for the sake of your future patients, I hope things change for you soon. But I also hope that you will look back at this time as a very important phase in achieving widespread acceptance of the hypothesis of CCSVI in MS, in which you played a significant role. What you’ve been doing -- educating us and the world, collaborating with and convening medical professionals, writing scholarly articles, responding to the naysayers with the facts, is championing a cause that will have life-changing benefits around the globe, for more patients than you could possibly treat yourself.

So when you do regain the ability to treat individual patients, I hope and pray that you will continue to be champion of this cause. I can’t tell you how much that means to me.

With heartfelt gratitude,

MS_HOPE

[drsclafani]

Dr. S,

Are you planning to submit your critique of the two studies to the Annals of Neurology? it is beyond surprising to many of us that poorly designed studies would be rushed to publication in a peer reviewed journal.

Michelle

others have responded quite well but the responses seem to be taking longer to be accepted and published than the objection seems to have taken.

Dr, dont you think that sometimes such hurriedly published papers in a way lend credibility to CCSVI? I would be more worried if someone was convincing enough to have tried replicating accepted protocols and yet did not find any issues.

so many posts i sometimes cant remember if i already responded.

no i do not think that a paper objecting to liberation or the concept of ccsvi lends credibility to ccsvi

the more the papers refute the idea, the more doctors will think it is nonsense.

while you may know of the triumphs, these article become evidence of failure.

[drsclafani]

Hi Dr S,

I just really need to know if there are people in wheelchairs who do the liberation procedure with good results.

I'm in a wheelchair now for the past 2 years. I've had RRMS and I still get RR symptoms, but my walking hasn't returned. Strange. Frustrating.

Now, I learn from a Doppler test that my IJV are narrow at certain points.
I'd like to have the proedure done.

I've learned that this procedure helps movement. Has restoring circulation helped anyone walk again? Is there reason to hope?

Thanks for shedding some light.

the definition of a good result could be many situations, some of which will lead to great disappointment, just as other results might feel miraculous

if you are PPMS, perhaps you would consider stabilization of your situation, however bad, highly desirable

if your situations requires that you have assistance to get on and off the toilet and you improve to do it yourself, it might be an outstanding result. If you can throw your walker to the wind and climb up the steps to your bedroom without help you might be ecstatic and if you lose that effect you might be horribly depressed. if you can feel your foot, or sweat or tolerate an afternoon in the garden in 90 degree weather, you might be overwhelmed by the event

of if you think you are going to jog in a marathon and cant, you might feel that the results were unsatisfactory

what i am saying is that each of you has hopes and dreams and realities to address. We cannot predict if or how much improvement comes your way yet. we cannot tell how long the improvements will last. we cannot be sure that your trip to europe or mexico or any other area in the world will be worth it to you in the long run.

What we know is that there have been some amazing stories and outcomes, that exceed the tragic complications;

dr siskin stated a rule of thirds at my symposium: one third have amazing recoveries, one third have slow moderate improvements and one third seem the same.

he was cautioning about unrealistic expectations or wild hopes. All i can say is i hope that you are among the third who obtain the maximum benefit.

[drsclafani]

Hi Dr S and others,

After a false negative catheter Venogram - Dr S said here was CCSVI when i sent him the images, i am now going to Poland for new testing (doppler/MRV) and treatment

But dr S said i had May Thurners too, so what do i ask or request my doctor to do for the procedure?

do i just ask them to enter via the left illiac vein?

how can i persuade them too, as i read its more difficult for them to enter through the left

thank you

i believe it was me that the person was asking questions.

we have been discussing among leadership how best to standardize diagnostic workups, and treatments. it becomes very clear that some education is essential to obtaining consistent results. We are not there yet. Some have been aggressively marketing the treatment and some of these have not been, in our view, adequately trained.

i think that if you are feeling compelled to be educating your physician about standards of care, or standarized protocols, then you should think twice about rushing into treatment.

how many patients has your doctor treated
how much did it cost
what were his outcomes

you need to be wary about anyone who cannot tell you about his or her outcomes, including

Which dr S, and which Poland doctor?

so many questions, sometims i just lose them in the hundreds of email a day
i believe it was me of whom the person was asking questions.

we have been discussing among leadership how best to standardize diagnostic workups, and treatments. it becomes very clear that some education is essential to obtaining consistent results. We are not there yet. Some have been aggressively marketing the treatment and some of these have not been, in our view, adequately trained.

i think that if you are feeling compelled to be educating your physician about standards of care, or standarized protocols, then you should think twice about rushing into treatment.

how many patients has your doctor treated
how much did it cost
what were his outcomes

you need to be wary about anyone who cannot tell you about his or her outcomes,

sometimes delay is beneficial

[drsclafani]

Another quick question; if I may:

A vein that is not "responding" to ballooning (instant multiple restenose etc...) should be a better candidate for stent isn't it? Since it 'naturally' collapse and squeeze the vein; it shall much easily 'integrate' the stent in the wall?

Thank you for your time

Algis

algis, i would think that your logic is sound, provided an adequate vein diameter was judged and the stent was larger than that diameter

[drsclafani]

Dr. S wrote:

the video is completed and was sent to L who is doing some sound engineering to improve quality of the speakers voices (the quality of their ideas and presentations was first class)
not sure how long it will take. it might be superfluous now. things move so fast in ccsvi

Please Dr. S, finish the video if you can. It will not be superfluous. Although things are moving quickly, there are so many people who didn't get a chance to see the symposium. It was such a great event. The video will be a wonderful learning tool, and I have a list of people who are waiting for it. Thanks to both you and L for working on it.

L should have the cd over the weekent, then we can harras him all day

[drsclafani]

Edited quote from Dr. Sclafani:

“I have been wrestling with a momentous personal decision all week.

I have stepped down as chief of radiology to dedicate my attention on CCSVI.”


Wow.

Dear Dr. Sclafani,

You are our champion, in every sense of the word. Through you, we people with MS, and our caregivers, have been truly heard. In you, we have a knowledgeable, caring, powerful, truth-telling voice. With you, we have hope of a better future. I can only speak for myself, but believe many others feel the same way. Your commitment to making a difference in the lives of persons with multiple sclerosis is an unimaginable gift to us. And we are so deeply thankful for you and to you.

Eleven years ago, when our eight-year-old daughter faced a daunting months-long hospitalization and difficult year-long recovery, her doctor exhorted my husband and me to be her champions. We understood him to mean that we would continuously and diligently look out for her best interests, be her spokesperson, be assertive in ensuring her needs were met, thinking, questioning, working on her behalf. For she was our singular concern, one very ill little girl out of thousands of hospital patients tended by scores of doctors, nurses, technicians. We took our charge seriously, and would like to think we played a significant role in her successful outcome.

I know you sorely miss the ability to treat patients with CCSVI right now, and for that reason, and for the sake of your future patients, I hope things change for you soon. But I also hope that you will look back at this time as a very important phase in achieving widespread acceptance of the hypothesis of CCSVI in MS, in which you played a significant role. What you’ve been doing -- educating us and the world, collaborating with and convening medical professionals, writing scholarly articles, responding to the naysayers with the facts, is championing a cause that will have life-changing benefits around the globe, for more patients than you could possibly treat yourself.

So when you do regain the ability to treat individual patients, I hope and pray that you will continue to be champion of this cause. I can’t tell you how much that means to me.

With heartfelt gratitude,

MS_HOPE

ms hope, that was beautiful and empathic

you and all the others who have given me words of encouragement, in a very risky decision are much appreciated.

YOU ARE MY CHAMPIONS

[drbart]

So I've been pondering Zamboni's 50% after 18 months observation, and taking in Siskin's "rule of thirds", and I'm wondering if the net effect is drastic under-reporting of restenosis.

Think about it - you have 1/3 patients not seeing any improvement .. are they going to know or care if they restenose? And did they maybe restenose before any improvements could be noticed in the first place?

And how many of the 1/3 moderate improvement folk who restenose aren't going back for follow-up?

Did Sinan report different success rates (more than 1/3) or restenosis rates with his Big Balloon methods?

My anecdotal sampling of cases I personally know about suggests to me that most angios - with the standard small balloons anyway - start restenosing within a few weeks.

I'd be happy to be corrected on this.