DrSclafani answers some questions

[NZer1]

Hi Dr, is CCSVI the first or only reason for investigating/ operating/ learning about the outlet flows from the brain?

[LauraV]

LauraV, I made the post right above yours, and in it DrS had said that he understood why people were choosing private clinics, since university hospitals aren't doing enough trials, and since time waited is brain wasted, or something to that affect, it is a translation from Danish. All you have to do is edit your question from 'pros or cons, anyone?' to 'what do you think, Dr. Sclafani' and you'd be set...[/quote]

Thanks, CeCe.

So what do you think, Dr. Sclafani? I'm frustrated by the MS Industry refusal to consider data that supports CCSVI; amazed at their ability to control our treatment options; shocked that they have this influence in the medical community and stunned this can happen in the US today.

Thoughts of class action lawsuits and media campaigns run through my head. I would join both immediately but these are long-term options. Is there anything that you think we should do now, while our brains are wasting away?

What options do you think we have?

[JoyIsMyStrength]

Hi Dr. Sclafani,

A friend of mine (*wink, wink*) had a venogram showing stenosis in both jugulars, treated via angioplasty, saw improvements for a week, then woke up one day back to square one. Now, same as before treatment, the patient's left foot is so purple the toes look almost black but this is not continuous -- the discoloration comes and goes in varying degrees of red, purple, and near-normal. There is pitting edema in both feet. The left leg aches off and on during the day.

If you were presented with a patient like this (hypothetically of course), what would be your first impression? What might you recommend?

My friend thanks you.

Pam

[drsclafani]

Hi Dr, is CCSVI the first or only reason for investigating/ operating/ learning about the outlet flows from the brain?

it was not the first , discussions regarding dural sinus thrombosis, for example, preceded discussions about ccsvi.

[drsclafani]

LauraV, I made the post right above yours, and in it DrS had said that he understood why people were choosing private clinics, since university hospitals aren't doing enough trials, and since time waited is brain wasted, or something to that affect, it is a translation from Danish. All you have to do is edit your question from 'pros or cons, anyone?' to 'what do you think, Dr. Sclafani' and you'd be set...

Thanks, CeCe.

So what do you think, Dr. Sclafani? I'm frustrated by the MS Industry refusal to consider data that supports CCSVI; amazed at their ability to control our treatment options; shocked that they have this influence in the medical community and stunned this can happen in the US today.

Thoughts of class action lawsuits and media campaigns run through my head. I would join both immediately but these are long-term options. Is there anything that you think we should do now, while our brains are wasting away?

What options do you think we have?

Laura, as i said, this is a personal decision. I will PM you personally but write here about my opinions in general.

we are advocating a procedure that has been proposed but not yet proven to be efficacious. That so many patients have short term and quite surprising improvements so quickly suggests strongly to me that improving venous outflow can improve quality of life for so many. The anecdotes are so thrilling and inspiring. Without hard data, liberation will not easily become main stream, especially because of the short term relapses that occur. It happens periodically that a therapy is so intrinsically better than the alternatives, safe and effective, that community desires trump science. I do not see that here because the results are not uniformly effective. So studies are important to prove this.

It has been a long time (in ccsvi terms) that i said that we are in an age of discovery. How to diagnose? Who to treat? Who not to treat? How to treat? How to do followup? Cutting balloons? types of balloons? stents? what type of stents? Do we seek new types of stents? What will be standards of physician education? How about checking for genetic issues? How about modifying that? It is surely a worthy career for a young physician going into an academic life. Sure is enough for me.

So starting a class action suit, from this nonlawyer, against neurologists, pharma, government, seems futile. No one can be forced to do a treatment that is not standard of care. If one could find evidence of collusion to inhibit the development of ccsvi research, then perhaps.

So this grassroots movement has finally hooked onto the IRs, because they are innovational radiologists as well as interventional radiologists. They will surely explore this with a frenzy that is their nature. They will do a good job but as Dr. Aaron Miller has stated, we are radiologists who have not spent our lives studying and practicing on MS. we will learn, develop registries, do trials, but hopefully with some curious and caring neurologists partners.

So for now, i think that personal decisions regarding having treatments are just that.

we need to create an infrastructure that focuses on funding ccsvi research because NMSS has its own agenda. the organizations that are forming , like the ccsvi alliance, need to grow into the oversite of this vascular problem

[drsclafani]

Hi Dr. Sclafani,

A friend of mine (*wink, wink*) had a venogram showing stenosis in both jugulars, treated via angioplasty, saw improvements for a week, then woke up one day back to square one. Now, same as before treatment, the patient's left foot is so purple the toes look almost black but this is not continuous -- the discoloration comes and goes in varying degrees of red, purple, and near-normal. There is pitting edema in both feet. The left leg aches off and on during the day.

If you were presented with a patient like this (hypothetically of course), what would be your first impression? What might you recommend?

My friend thanks you.

Pam

pam....visine might help remove that florida sand from you eye.


i would think that you need a color doppler to show signs of ccsvi, then a repeat venogram to show restenosis, then a second angioplasty.

[JoyIsMyStrength]

pam....visine might help remove that florida sand from you eye.

LOL! Thanks for the tip!

So the purple, swollen foot... would that lead to the possibility of getting treatment that an insurance co might actually cover? That's really what I was getting at. The sand in my eye was making it hard to see the keyboard so I may not have winked enough.

[belsadie]

Dr. S, Your reference to Aaron Miller sort of made me see red..I had a visit with him when I was first diagnosed----talk about a nonchalant attitude about this MesS we're in. While NOT LOOKING ME ONCE, he said, about which DMD to start- he told me to "pick one, they're all the same. Don't worry/" and handed me off to his nurse. I couldn't believe the way I was dismissed by him. He certainly does not know the first thing about the people with MS. He, I'm sure, can site you research results with flair but really knowing. I don't think so...
If he's the best they have -------one for our side!

[nicknewf]

actually, i have spoken with several canadian physicians. mostly sandy mcdonald

i wonder whether IRs or neurologists will win these grants. Neurologists are much more adept and familiar with writing grant proposals

It also doesn't help that the MS Society of Canada is going to be helping the government review the proposals - but the money is supposed to be earmarked for treatment trials. Neurologists can't do the treatment.

I hope Dr. MacDonald is able to get a trial going; although if Canadian trials won't even start until September - I would hope some other trials would already being publishing some preliminary findings by then on 1. safety, 2. incidence of vascular disease; 3. incidence of immediate benefit. Would the availability of such data affect the type of trials which can be done?

At what point does it become unethical not to treat? My understanding is that human trials become unethical when one cohort (the treated cohort) performs substantially better than the other cohort (untreated cohort), which causes the study to become unblinded and the untreated cohort to get treated. Does the study proposal need to take third party data into account in this regard?

[MS_HOPE]

LauraV said: "I'm frustrated by the MS Industry refusal to consider data that supports CCSVI; amazed at their ability to control our treatment options; shocked that they have this influence in the medical community and stunned this can happen in the US today."

Laura, I hear you. A few years ago, after seeing my 8-year-old daughter endure the most horrendous stem cell transplant treatment (for AML leukemia) that saved her life, I was deeply shocked and sickened to learn of the systematic squelching of promising cancer treatments and cures by the powerful groups interested in preserving the status quo, including the AMA, the American Cancer Society, the FDA, and others. This outrageous state of affairs over the course of almost a century was meticulously documented in a book When Healing Becomes a Crime written by award-winning author Kenny Ausubel. It forever and fundamentally altered my view of Western medicine, our government and political process, and even, indeed, the fundamental nature of humankind. The war against "unconventional" approaches continues to this day.

I see the same things happening here, as CCSVI is dismissed as "sham science", etc.

Reading the threads on TIMS about CCSVI these past few weeks has given me hope for MS (and for humankind!). But let us not fool ourselves. Without the persistence, intelligence, and compassion of committed MS activists like Joan and so many others, CCSVI would be just another discarded hypothesis, just as the vascular-MS connection was ignored in the past, by the very doctors who were supposed to be "treating" us..

I cannot tell you, Joan and others, how your stories, perceptive questions and keen observations, and outpouring of support for each other have touched my heart. I feel so much love here.

I can't begin to express the depth of my gratitude to Dr. Sclafani, who is everything a patient could ask for in a medical doctor, and so much more. Your presence here to guide and educate us has been of such immeasurable benefit. From the bottom of my heart I wish you continued strength and wisdom as we move forward in the search for truth about CCSVI, wherever that search takes us.

[MS_HOPE]

[quote="drsclafani"]
'
people see what they are prepared to see.


How true, Dr. Sclafani. Anais Nin put it this way:

"We don't see things as they are, we see them as we are."

[girlgeek33]

I would love to be a photographer for your book. Since becoming disabled, vie been taking photagraphy classes, and I'm not too bad, have all the equipment, so I offer my skills...

Hi Dr. Sclafani,

it is quite interesting that 200,00 hit milestone passed with barely a peep.

Your first post was March 14
100,000 posts on May 13 = 9 weeks
200,000 posts on June 30 = 6 weeks = 3 weeks sooner!

When I had flipped my calendar, I noticed your star on July 21 (the nine-week mark), then I checked your current views which showed 199,996!! The 1/3 fewer weeks took me, and I'm sure everyone else, by surprise!

so lets look at some of the undeliverables to you

1. a test still has not been read
2. we are discussing an atlas
3. I did not get an IRB proposal accepted

1. Did we forget to tell you that we would much rather ask the questions and have you answer them?

ok ask away

. Will this be an Internet-based atlas and/or a print-based atlas?

I think a print based atlas would be useful . I am thinking of an atlast of the face of ccsvi. in Particular images of you patients for the doctors to identify with, followed by doppler, MRvenographic, catheter venographic images of ccsvi. That is why I have encouraged the kamikaze to join me. There are studies that show that if you add a patient's face to the digital folder of images of a diagnostic test, you get more detailed descriptions and better reports? It just goes to show that empathy goes a long way. The goals ofmy atlas include getting doctors to see you as human beings and not just patients

You can find your office and email inbox filled with CDs and images simply by posting a physical/PO Box address and an email address.

ok, here it is. send your images to

Salvatore ja sclafani md
Department of Radiology
Kings county hospital center
451 clarkson avenue
brooklyn new york 11203

remember to write your history, your treatment and anything else that is relevant. I will scrub all patient information from the images. if you want to be listed as a contributor, please let me know. if i use your images i will do so.

please do not send me any originals. Please do send me a letter stating that you give me permission to use the images in an atlas without obligation or expectations.

i will try to create a coffee table book that can be of interest not just to doctors.

all profits will go to funding ccsvi research

3. You can win approval with a second application--take as long as necessary to arrive at the right decision for you.

I'm raising my glass of grape juice to toast your previous 100,000 views, this 100,000 views, and your next 100,000 views, BUT the biggest celebration will come when you hit 1,000 of your smart, welcoming, caring, witty, thoughtful, expert, honest, polite, compassionate, and forgiving posts read by an audience of thousands! Wow!

In addition to helping us, you're busy saving organs and lives, teaching medical school, advising students, mentoring residents, overseeing your department, and so much more. I don't know how you do it all, but I am very grateful that you do find the time for us.

Thank you again, Dr. Sclafani, our Rock star.

~HP

thanks

[HappyPoet]

Hi Dr. S.,

Thank you for the photo of the Statue of Liberty -- she's a perfect 4th of July, Independence Day gift to all of us!

~HP

[thornyrose76]

Hello and thank you Dr. Sclafani. I intend to have the procedure in the United States and I need your advise. If I have stents put in what are the chances that I could have some type of complication? Would I be on a blood thinner medication for life? I look forward your response.

[Cece]

Thornyrose, this does not directly answer your question, but here are some things Dr. Sclafani has said about stents in the past:

my experience with venous stents is mostly as they relate to treatment of stenosis of veins used in hemodialysis. Indeed that it by far the most common indication for venous stenting. This is not quite equivalent to venous stenoses in jugular veins that have outflow problems with valves and hypoplasias.

With stents in dialysis patients come some long term(,stenosis of the setnt occlusion of the stent and fracture of the stent)and short term problems. (migration, infection, thrombosis)

Migration occurs because veins get larger as they get closer to the heart. This is in the same direction as flow. Thus flow pushes the stent toward a larger blood vessel rather than toward a smaller blood vessel as occurs with stents in arteries. The way we reduce this risk is to oversize the stents. So, if a blood vessel has a diameter of or 6 millimeters, we would oversize the stent by about 20%. That gives us a diameter of around 8mm. But the jugular vein can distend by as much as 100% or more. So putting a 10 mm stent might be adequate.

infection is certainly not a common problem

thrombosis occurs when the stent clots off. Clot can form when there is turbulent flow, slow flow or foreign body. A stent is a foreign body until it is incorporated into the wall when the lining cells of the blood vessel grow over it. That is why antiplatelet drugs like plavix (clopridogrel) and anticoagulants like heparin, are given for a few months.

stenosis of stents occurs because of turbulence at the stent vein junctions or because of a increase in cells (hyperplasia) caused by stimulation by the stent. This can lead to stenosis. Those stenoses can be harder to treat. They can also lead to long term thrombosis.

Finally stent fracture can occur because of motion of the neck leads to stress on the metal struts of the stent. This depends upon the degree of motion and the degree of flexibility of the stent.

So now that I have terrorized you, let me give you my opinion about stents again. Primary stenting means that you start by stenting at the time of dilatation. That means that those patients who would have done well without them have had them placed for no reason. Those patients now have a lifelong risk of intimal hyperplasia, thrombosis and stent fracture that might be difficult to treat in the long run. This in addiiton to the risk of migration, acute failure and the risks of long term anticoagulation.

Of course, if dr Zamboni's data (50% restenosis) is not better than others will report, for example reports of restenosis is 90%, then something better needs be done. and stents might be the answer.

the real issue iss the anticipated long time of survival of patients with ms who are treated by liberation. Too long for less than desirable stents currently on the market. New stents designed for the jugular veins, including stents that flare out or have anchoring hooks to reduce risk of migration, drug eluding stents that reduce hyperplasia, covered stents, etc will be developed if liberation is proven to be the standard of care of the future. The companies will build if you will come

that is why i do not want to stent now. I prefer to wait for more data and better devices.

And a pro-stent statement, on April 17th, for someone who has experienced restenosis after angio:

If I had what you described, i would probably also make a decision to take the risk for you sound like your options are very limited. Short term restsenosis means either that the angioplsty did not adequately treat your problem, or your problem cannot be adequately treated by angioplasty. Your conclusion that restenosis make migration less likely is possible, but migration will really depend upon how much it dilates after stenting, exactly where the stenosis is, how long the stenosis is, and a host of other issues.

While i do not want to have a migration in one of my patients, i do not think that is my greatest worry. it is more what to do if the stent clots off. will it be possible to re-established flow through the clotted stent. But for you that is a brid/g/e or stent that you havent arrived at yet.