DrSclafani answers some questions

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

Re: Dr Sclafani answers some questions

Postby drsclafani » Mon May 03, 2010 7:28 pm

simone wrote:
drsclafani wrote:
prairiegirl wrote:@Karenems WOW! Dr. S, are you seeing some patients with fast and dramatic improvements like this?

Dr S
i have seen even more dramatic improvementws. but some of the most dramatic do not last for very long. is it restenosis? , i supsect it is, although i wonder what really is the symptom change3 very often
.

but the improvements are sometimes frighteningly dramatic. so much that it feels like i could not have caused that to happen


what are your thoughts on what may be the cause? Have you gone back in to look? How can the vascular flow have such effects?

If it is " myelin damage", as i thought it is seen by neuros, how could there be any such response and if there is restenosis then reverting back of symptoms doesn't that show the direct relationship of ccsvi to symptoms? rather than calling those symptoms MS. the plaques did not repair that fast. what am i missing here? quite a placebo.... perhaps touched by an angel......
Oh, so much appreciation!


sometimes i just need to decompress. if you think this waiting is getting to you, you should see me. I get up, i get down, i get angry, i get pleading, i hate the irb, i esteem the work they do

i just want to get going too

how can i explain these abrupt changes.? we can all guess cant we. perhaps myelin transmission needs certain amount of blood flow,oxygen pressure reduction, cleansing for improved function. Your guess is as good as mine at this point. Like i keep saying we are just beginning an age of discovery. so much to learn, it will take the rest of my useful career, and i am thankful for that.

clearly such improvements in the moment, sometimes even before the procedure is completed will lead to doubts, especially by those who don't want to have been this wrong.
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Postby drsclafani » Mon May 03, 2010 7:30 pm

bluesky63 wrote:Hi again. :-) I wonder about this experience. I was in the ER last summer and the staff put a nitroglycerin patch on me because I'd had cardiac symptoms. As it turned out the cardiac stuff was from a seizure, not primary cardiac problems.

But the patch was interesting -- the constant headache I had went away, I felt alert for once, my hands were warm and moving, and I was able to move my head around without as much dizziness and even talk to people clearly -- in fact, maybe even like a mini-liberation, from what I am hearing people describe. Then after they removed the patch it all reverted to my usual junk.

What is your take on that? Could vasodilation help people waiting for their liberation? Does that help explain the effects, along with better oxygenation?
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Re: Dr Sclafani answers some questions

Postby cheerleader » Mon May 03, 2010 7:33 pm

drsclafani wrote:sometimes i just need to decompress. if you think this waiting is getting to you, you should see me. I get up, i get down, i get angry, i get pleading, i hate the irb, i esteem the work they do
i just want to get going too

hang in there, Dr. S. We want you doing what you do...healing people. We'll get there- promise.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby drsclafani » Mon May 03, 2010 7:33 pm

bluesky63 wrote:Hi again. :-) I wonder about this experience. I was in the ER last summer and the staff put a nitroglycerin patch on me because I'd had cardiac symptoms. As it turned out the cardiac stuff was from a seizure, not primary cardiac problems.

But the patch was interesting -- the constant headache I had went away, I felt alert for once, my hands were warm and moving, and I was able to move my head around without as much dizziness and even talk to people clearly -- in fact, maybe even like a mini-liberation, from what I am hearing people describe. Then after they removed the patch it all reverted to my usual junk.

What is your take on that? Could vasodilation help people waiting for their liberation? Does that help explain the effects, along with better oxygenation?


perhaps your nitro improved your vasomotor unction, allowing improved cardiac output. perhaps like a liberation, you had improved inflow, not by the same mechaisms as liberation but by improved cardiac function and reduced risistance to flow

i would not recommend however snorting amyl nitriate or popping nitros on the way to your liberation. Amazing how your hopelessness leads you to want to try anything! all the more reason to treat liberation with a liberal dose of science
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Re: Patient post-procedure changes

Postby drsclafani » Mon May 03, 2010 7:42 pm

Rosegirl wrote:Dr. Sclafani,

One huge piece of the equation that we patients don't have access to is what happened to the folks who had the procedure done.

So what are you finding? For example, do most people get reduction from pain? How much does walking and balance improve? Is the rate of improvement much better in RRMS patients than SP or PP? What else should we know to ask about?

My doctor said I should have this procedure, but he wouldn't say why. I assume he feels that it will treat my symptoms, but he won't give me anything specific. I'm not looking for guarantees, but it would be helpful if he said that "we see improvement in your symptoms in most patients with your kind of MS". Otherwise, I feel like his lab rat rather than his patient.

So can you shed any light on post-procedure changes in patients' conditions?

Gratefully!


So far PPMS has shown little change. Those patient was already chaired and limited improvement was expected. it is too early to say whether progression is slowing or stopped, of course.

both RRMS and SPMS have shown a variety of scenatios, ranging from spasticity abating before completing ths test, only to recur shortly there after.
there has been acute relapse, but the associated development of optic neuritis turned out to be chronic sinusitis. There was the man who walk hugged to finaicial clearnace who run up and down stairs the next m orning, only to lose those amazing effects in the first three weeks. There are those who had minimal changes to begin with who then wanted to go o rehab because they felt like they could do it.
Frequently there is mproved warmth and reduction in numbness in the extremities

but it is all too soon. Some of the earlier cases are waiting to come back for a second treatment becuase i am better now than when i started tiong this.

There have been all "normal" azygous veins,until i discovered a better way to image them. now they are mostly abnormal....ralph waldo emerson said it, among others....."people see what they are prepared to see'

So the anecdotes will remain that way for now. the trial will be more rigorous
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Re: In-stent restenosis

Postby drsclafani » Mon May 03, 2010 7:51 pm

Zeureka wrote:
drsclafani wrote:My concern about stents is more related to in-stent restenosis. we will need more work to see what problems occur with this
Dr Sclafani, I only found information on internet on in-stent restenosis in arteries and have a few questions related to this. Here some quotes I found:

- "Initially, new tissue growing inside the stent consists of healthy cells from the lining of the arterial wall (endothelium). Later, scar tissue may form underneath the new healthy lining. In about 25% of patients, the growth of scar tissue underneath the lining of the artery may be so thick that it can obstruct the blood flow and produce an important blockage. In-stent restenosis is typically seen 3 to 6 months after the procedure; after 12 months have passed uneventfully, it is rare."
=> Would you know if there have been any cases in percutaneous venoplasty so far?

yes, i have heard of several patients who underwent stenting who devloped in-stent stenosis caused by intimal hyperplasia. I dont know the frequency because there is no report of a trial yet with stents


- "Compared with balloon angioplasty alone, where the chance of restenosis is 40%, stents reduce the chance of restenosis to 25%" ?! =>This approx. figure also likely for percutaneous venoplasty?

- "Can in-stent restenosis be prevented? =>Can it?


it can be reduced. There are several drugs that can coat the stent and prevent this intimal hyperpalsia. There are other techniques such as cryoablation (freezing) and radiation balloons that reduce in stent stenosis. However none of this exists for jugular veins yet.

as i have said the long term effects on stents in the jugular vein is unclear. I would rather redilate than put some metal in and then reach a point where the stent is not salvagable.

- "New Techniques to Prevent Restenosis: Drug-Eluting Stent => Are those applied anywhere already? Guess only in research? Or is this old info that not FDA approved yet?


durg eluding stents are usued in coronary ciirculation for a long time. whether they improve longevity of the patient is not clear.



- "What can patients do to protect themselves? => THAT SOUNDS FEASIBLE
After the procedure, patients should lead a heart-healthy lifestyle that includes a diet low in animal fat, regular exercise, blood pressure control, cessation of smoking, and minimal alcohol consumption. Regularly following-up with a cardiologist and taking medications as prescribed are also important preventive measures."


lead a healthy life.....good advice
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Postby drsclafani » Mon May 03, 2010 7:56 pm

Cece wrote:found it: http://www.hotellebleu.com/

Any thoughts on cryoballoon (cold) or brachytherapy (radiation, delivered in the balloon) as means to reduce restenosis in CCSVI?

I read...somewhere on the web...that the standard after angioplasty is that up to 30% stenosis remaining is considered a success. Is 0% unreachable?

drsclafani wrote:but the improvements are sometimes frighteningly dramatic. so much that it feels like i could not have caused that to happen


who knew plumbers had the best gossip...


i think that 30% stenosis in these veins would be pretty unacceptable because the pressure in the veins is so low. We need to achieve better
the nature of the stenosis is totally different than coronary arteries. In the coronaries, the narrowing is caused by lipd laden plaques unlike those floating around in your heads, my friends

when angioplasty is done for those patients iti is not the cause of the narrowing that we are treating. it is the normal vessel that we stretch. In the veins that is not what we do. we need to stretch the abnormal narrowed segment and stretch it open. Ideally, i would put stents in to keep things open. but until marian simka reports his five year followup, i will stay on the sideline.....well maybe not five years.
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Postby drsclafani » Mon May 03, 2010 7:59 pm

Zeureka wrote:
drsclafani wrote:
prairiegirl wrote:@Karenems WOW! Dr. S, are you seeing some patients with fast and dramatic improvements like this?


i have seen even more dramatic improvementws. but some of the most dramatic do not last for very long. is it restenosis? , i supsect it is, although i wonder what really is the symptom change3 very often
.

but the improvements are sometimes frighteningly dramatic. so much that it feels like i could not have caused that to happen
:) but if so dramatic, I trust we can now skip the doubts on this placebo effect argument !! It can be quite insulting and there are so many different testimonials on same type of improvements in different places.

A


how about a little bit of placebo and some improved blood flow?
there could still be a placebo effect...........but i really doubt it!
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Re: the liberation stent?

Postby drsclafani » Mon May 03, 2010 8:05 pm

codefellow wrote:Dr Sclafani,

From what I understand, there are no stents specifically designed for the jugular. If you were to design such a stent, what would be different about it from other stents?

And here is a suggestion that can help a lot of people and possibly make you and some other people very rich at the same time -- design the stent, patent the design, and take the design to a medical manufacturing company. Anyone who can jump ahead of demand on a product like this is going to get really rich really fast and will deserve every last cent of it.

:D


if i answer this question, will you go out and patent it? :lol:

if i patented it, i would give it away with the requrement that the stent manufacturer give a rebate to everyone who kissed theiir lover in the recovery room. :wink:

but seriously the stent would have some characteristics. a covered stent, broader centrally than distally, something that had very strong hoop strength, and some kind of anchor that would prevent central migration....and of course something that would inhibit in stent stenosis.

now go kiss your lover
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Re: Dr Sclafani answers some questions

Postby Cece » Mon May 03, 2010 8:12 pm

drsclafani wrote:sometimes i just need to decompress.

"who will care for the caregiver?"...please take care of yourself, you deserve it too... :)
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Re: Maximum heigth of stenosis?

Postby drsclafani » Mon May 03, 2010 8:13 pm

William57 wrote:Hi dr. Sclafani,

Can you say something about the maximum height of a stenosis that is still treatable? Or: a what distance beneath the base of the skull it should be that it can be treated without any risk? (I know any treatment implies a risk, crossing the street as well.) Or can the stenosis reside e.g. in the brains where it can be treated without any hesitation?


There have been stenosis in the dural sinuses reported. whether they are the same entity as ccsvi, whether they are physiological or not, whether they can be treated or not is beyond my experience. There are reports of treatment but the ones i have read about are not in patients with known MS. This is not to say that I really know the answer to this.

With regard to the height, you have to understand that i after speaking with Paolo, think most of the high narrowins are physiological and i have not reated them. Treatment is not without sirks of cranial nerve injury

HEY!!! what is this without riskj. Uncommon risk is not no risk
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Re: Dr Sclafani answers some questions

Postby drsclafani » Mon May 03, 2010 8:15 pm

Cece wrote:
drsclafani wrote:sometimes i just need to decompress.

"who will care for the caregiver?"...please take care of yourself, you deserve it too... :)


you damn people are TOO nice. I cannot rest knowing you need help
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Re: Patient post-procedure changes

Postby girlgeek33 » Mon May 03, 2010 8:35 pm

drsclafani wrote:but it is all too soon. Some of the earlier cases are waiting to come back for a second treatment becuase i am better now than when i started tiong this.

There have been all "normal" azygous veins,until i discovered a better way to image them. now they are mostly abnormal....ralph waldo emerson said it, among others....."people see what they are prepared to see'

So the anecdotes will remain that way for now. the trial will be more rigorous


Are you planning to, or have you already shared with other Drs, like Dr. Bonn and Dr. Siskin, what you found that made the difference with azygos veins?
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Re: Patient post-procedure changes

Postby drsclafani » Mon May 03, 2010 8:40 pm

girlgeek33 wrote:
drsclafani wrote:but it is all too soon. Some of the earlier cases are waiting to come back for a second treatment becuase i am better now than when i started tiong this.

There have been all "normal" azygous veins,until i discovered a better way to image them. now they are mostly abnormal....ralph waldo emerson said it, among others....."people see what they are prepared to see'

So the anecdotes will remain that way for now. the trial will be more rigorous


Are you planning to, or have you already shared with other Drs, like Dr. Bonn and Dr. Siskin, what you found that made the difference with azygos veins?


my team is doing the research of larger numbers of azygous veins from CT scans of the chest. we have not ompleted the analysis yet.
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Re: Patient post-procedure changes

Postby girlgeek33 » Mon May 03, 2010 8:45 pm

drsclafani wrote:
girlgeek33 wrote:
drsclafani wrote:but it is all too soon. Some of the earlier cases are waiting to come back for a second treatment becuase i am better now than when i started tiong this.

There have been all "normal" azygous veins,until i discovered a better way to image them. now they are mostly abnormal....ralph waldo emerson said it, among others....."people see what they are prepared to see'

So the anecdotes will remain that way for now. the trial will be more rigorous


Are you planning to, or have you already shared with other Drs, like Dr. Bonn and Dr. Siskin, what you found that made the difference with azygos veins?


my team is doing the research of larger numbers of azygous veins from CT scans of the chest. we have not ompleted the analysis yet.


CT scans, cool! I've heard that it is difficult to see azygos until venogram. Did you try CT scans because of that?
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