DrSclafani answers some questions

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Re: DrSclafani answers some questions

Postby SLOV8213 » Fri Aug 02, 2013 12:31 pm

Hi Cece,
I wonder the effectiveness of an unproven treatment versus risks of ballooning veins that are not occluded?
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Re: DrSclafani answers some questions

Postby CureIous » Fri Aug 02, 2013 8:03 pm

Cece wrote:
SLOV8213 wrote:Sorry, delicate.

Transvascular Autonomic Modulation (TVAM)

Regards, Stephen.
TVAM is a term that Dr. Arata has coined for his practice of performing angioplasty on normal-appearing veins under the assumption that this stimulates nearby nerves and improving autonomic nervous dysfunction via the nerve stimulation. Stephen, you sound like you are opposed to this or at least have a reasonable expectation that evidence be provided?


Ccsvi has come a long ways. We used to be so hyperfocused on stenosis, where they came from, how to eliminate them. Now we shuttle patients in the door, and whether they have stenosis or not is wholly irrelevant. Pathologies are a thing of the past. They will be treated, period.

Where's all the patient advocates when you need them?
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Re: DrSclafani answers some questions

Postby SLOV8213 » Fri Aug 02, 2013 8:52 pm

I know of a patient in Ontario, Canada who suffered a stroke receiving this treatment. Apparently going to far in the vein to stimulate the nerve. She walked in user her walker and is now using a manual chair her hands cannot operate the electric chair controls.
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Re: DrSclafani answers some questions

Postby CureIous » Fri Aug 02, 2013 11:37 pm

SLOV8213 wrote:I know of a patient in Ontario, Canada who suffered a stroke receiving this treatment. Apparently going to far in the vein to stimulate the nerve. She walked in user her walker and is now using a manual chair her hands cannot operate the electric chair controls.


Trying to stimulate the nerves outside the veins (which have no nerves internally), by ballooning enough to affect the adventetia outside the veins, is nothing short of animal experimentation at it's cruelest level. These so called Dr's should not be experimenting on live human guinea pigs.

I guess the money is just too good.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Re: DrSclafani answers some questions

Postby SLOV8213 » Sat Aug 03, 2013 9:36 am

You are exactly right,
It's a treatment TVAM invented by Synergy for a condition dysautonomia. Not a lot is known about this condition but it is speculated to have an acquaintance to autoimmune diseases amongst a multitude of others. It is also known for patients to exhibit a multitude of symptoms some of those are known to be exhibited by MS patients. I believe because the CCSVI gravy train is running dry this is just an attempt to keep the money coming through the door making use of what you have at your disposal.
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Re: DrSclafani answers some questions

Postby CureIous » Sat Aug 03, 2013 9:53 am

SLOV8213 wrote:You are exactly right,
It's a treatment TVAM invented by Synergy for a condition dysautonomia. Not a lot is known about this condition but it is speculated to have an acquaintance to autoimmune diseases amongst a multitude of others. It is also known for patients to exhibit a multitude of symptoms some of those are known to be exhibited by MS patients. I believe because the CCSVI gravy train is running dry this is just an attempt to keep the money coming through the door making use of what you have at your disposal.


Bingo.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Re: DrSclafani answers some questions

Postby 1eye » Sat Aug 03, 2013 12:53 pm

the CCSVI gravy train is running dry
I don't think all of these doctors are on a gravy train. Nor the research scientists. I think most are genuinely trying to help. There may be some charlatans and some who take advantage. Typically they do not have anything much in the way of qualifications, and do not publish research in peer-reviewed journals. The real hucksters will ask for huge amounts of money. Like people who sell medications for rare diseases at $1,000,000 per year. http://www.forbes.com/sites/matthewherper/2012/05/01/the-first-drug-with-a-1-million-price-tag-is-already-on-the-market/

This thread is for people to ask Dr. Sclafani questions. He is probably better equipped than most to recognize bad CCSVI practices. But I think he writes in this thread to educate patients, not uncover or prosecute shady doctors. I think for that, another thread should be started, at least.

The real runaway gravy train for "MS" doctors is the DMD business.
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'MS' is over - if you want it
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Re: DrSclafani answers some questions

Postby Rosegirl » Sun Aug 04, 2013 5:55 am

This thread has gotten off topic and has turned into a place to bash Dr. Arata and his research. Recent comments imply that he takes advantage of patients and profit, rather than health, is his goal.

My experience with Dr. Arata has been just the opposite. Although I have never been treated by him for any of my three venoplasties, I have corresponded with him. At his request, I sent him all my records for a complete review (with no possibility of traveling to his location for treatment). He would not accept my repeated offers of payment for this review. He was also kind enough to call me and recommend against further treatment of these veins – by any practitioner.

For those of you who followed my thread “When CCSVI fails, try AO and/or the Dentist”, that was directly taken from Dr. Arata’s suggestions. He has recommended both dentists and chiropractors as being able to help those of us who have not responded to CCSVI treatment. Again, there was no profit in this for him and again, he has been generous with both his knowledge and time. You’ll see I got some immediate improvements from the dentist he recommended. I’m in the middle of some treatment now, and my postings will continue when there’s more to report.

For those of you who are suspicious of his treatment costs, ask around. My insurance was billed over $38,000 for my first procedure in 2010 at Georgetown Hospital in Washington DC. Later procedures by other east coast facilities were billed at even higher rates.

Finally, and most important, Dr. Arata is capturing data and sending it for peer review before publication (http://blog.synergyhealthconcepts.com/new-treatment/). Have you noticed that so many of CCSVI’s early advocates have never published – or been heard from publicly – in recent years? Maybe they are getting data ready for publishing, but there are many doctors whose names we heard repeatedly two years ago that seem to have disappeared from the CCSVI arena. Go after them for abandoning us!

How many doctors and diagnoses we have all been through? Neurologists, cardiologists – the list goes on and on, and none of those “ists” has helped. Remember when we begged to be tested for lyme disease or vitamin deficiencies? Yet none of those “ists” offered alternative treatment when theirs failed.

For those of you who scream about the unwarranted attacks on Dr. Zamboni, don’t make the same with another practitioner. Don’t listen to Dr. Arata’s suggestions or have him treat you if you don’t feel that his ideas will benefit you.

Write an educated rebuttal to his proposals if you feel that they are not effective or are too costly for the service patients receive. Share your insight with the rest of us!

Be specific about your concerns. Site the science that refutes his claims. Tell us specifically what proof you have that his patients are being overcharged.

But until you offer facts behind your opinions, stop bleating like a neurologist!
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Re: DrSclafani answers some questions

Postby drsclafani » Sun Aug 04, 2013 9:56 pm

Cece wrote:
SLOV8213 wrote:Sorry, delicate.

Transvascular Autonomic Modulation (TVAM)

Regards, Stephen.
TVAM is a term that Dr. Arata has coined for his practice of performing angioplasty on normal-appearing veins under the assumption that this stimulates nearby nerves and improving autonomic nervous dysfunction via the nerve stimulation. Stephen, you sound like you are opposed to this or at least have a reasonable expectation that evidence be provided?


stephen, I do not have any papers that discuss or prove that the IJV are more delicate than any other vein. I have found that angiography of the IJV is not without risk, notably the thrombosis of these veins. In many reports, occlusion is the most common complication of this procedure.

I have stated that TVAM is not intuitive to me and that there is insufficient literature for me to treat normal veins as a way to modulate the autonomic nervous system. I look forward to some publications that make sense and provide some precedent for me to consider this treatment. So it comes down to risk versus benefit, as it always does. Some data on benefit is needed.
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Re: DrSclafani answers some questions

Postby drsclafani » Sun Aug 04, 2013 9:58 pm

CureIous wrote:
Cece wrote:
SLOV8213 wrote:Sorry, delicate.

Transvascular Autonomic Modulation (TVAM)

Regards, Stephen.
TVAM is a term that Dr. Arata has coined for his practice of performing angioplasty on normal-appearing veins under the assumption that this stimulates nearby nerves and improving autonomic nervous dysfunction via the nerve stimulation. Stephen, you sound like you are opposed to this or at least have a reasonable expectation that evidence be provided?


Ccsvi has come a long ways. We used to be so hyperfocused on stenosis, where they came from, how to eliminate them. Now we shuttle patients in the door, and whether they have stenosis or not is wholly irrelevant. Pathologies are a thing of the past. They will be treated, period.

Where's all the patient advocates when you need them?


a bit harsh on all of us. who is shuttling patients in the door? please clarify.
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Re: DrSclafani answers some questions

Postby drsclafani » Sun Aug 04, 2013 10:00 pm

SLOV8213 wrote:I know of a patient in Ontario, Canada who suffered a stroke receiving this treatment. Apparently going to far in the vein to stimulate the nerve. She walked in user her walker and is now using a manual chair her hands cannot operate the electric chair controls.


that is very sad.

I am not understanding yet how one gets a stroke from angioplasty of the jugular vein. i wonder if it might be an older person who had carotid plaque or atrial fibrillation. Anything you can tell us?
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Re: DrSclafani answers some questions

Postby drsclafani » Sun Aug 04, 2013 10:01 pm

CureIous wrote:
SLOV8213 wrote:I know of a patient in Ontario, Canada who suffered a stroke receiving this treatment. Apparently going to far in the vein to stimulate the nerve. She walked in user her walker and is now using a manual chair her hands cannot operate the electric chair controls.


Trying to stimulate the nerves outside the veins (which have no nerves internally), by ballooning enough to affect the adventetia outside the veins, is nothing short of animal experimentation at it's cruelest level. These so called Dr's should not be experimenting on live human guinea pigs.

I guess the money is just too good.


Who beside Dr Arata is performing this treatment?
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Re: DrSclafani answers some questions

Postby drsclafani » Sun Aug 04, 2013 10:09 pm

Does anyone have any questions that I can assist with?
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Re: DrSclafani answers some questions

Postby Lety » Mon Aug 05, 2013 1:28 am

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

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Re: DrSclafani answers some questions

Postby newlywed4ever » Mon Aug 05, 2013 5:51 am

Can IJVs be too small for angioplasty?
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