DrSclafani answers some questions

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

Re: DrSclafani answers some questions

Postby drsclafani » Wed Mar 20, 2013 11:39 am

ErikaSlovakia wrote:Dear Dr. Sclafani!
Happy Birthday from Slovakia! Všetko najlepšie k narodeninám!
Erika

belated thanks
S
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Re: DrSclafani answers some questions

Postby drsclafani » Wed Mar 20, 2013 11:47 am

1eye wrote:Funding... That's nothing. For pwCCSVI proceeding is sometimes not even possible... ;-)

Actually I was going to ask you something: what regime do you use for anti-coagulation lately? Do you expect that to change soon?

My experiences with that:

1. was on Plavix for one year after my heart-attack related angio, where 3 stents were used. I bruised a lot then because I had not had the procedure, and I probably tried to do more than I should have, a few years ago. I'm learning. Anyway for whatever reason, every bump or fall made a bad bruise.

2. was on Plavix for 1 month following procedure for CCSVI in 2010.

3. since heart incident of early 2009 have taken 1 aspirin/day, initially regular adult size, but cut back to baby size because I thought I must be getting nosebleeds from the dry air in winter, combined with a blood thinner. If I was right, I will not have them this winter. I will go back to the adult size in May if that works.

What I want to know is, since length of treatment seems to matter, are we paying that any attention? I hope my heart stents keep working. I don't know if you get clots with arterial stenting and it must be different for veins.

I have heard of everything from none to coumadin for life.


i have had a stable anticoagulation treatment plan for some time now, probably about 18 months. I am considering some changes, however.

I think that angioplasty deserves short term anticoagulation with a thrombin inhibitor and an antiplatelet regimen with plavix or asprin. I do not use plavix because it is expensive and probably increases risks when used with an anticoagulant . I would not term plavix a blood thinner but as a platelet inhibitor.

I have used low dose aspirin 81mg daily for six months or longer if tolerated. and dabigatran (pradaxa) to inhibit clotting for one month while the vein wall heals. I personally do not think that simple platelet inhibition or thrombin inhibition is sufficient alone since angioplasty activates both processes of platelet stickiness and adherence and thrombin formation.

I am considering beginning aspirin therapy the week before the procedure to assure that platelet inhibition is already begun before the procedure.
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Re: DrSclafani answers some questions

Postby drsclafani » Wed Mar 20, 2013 11:50 am

Robnl wrote:Hi Doc,

How was ISNVD 2013 in Poland?

Rgds,

Robert

robert, i was stimulated by the meeting and talk with collagues. More non-randomized and unblinded studies presented benefits of treatments. There was a very stimulating study of biofilm formation. However this was related to Lymes and other infectious processes and not directly translatable to ccsvi disease in ms patients.
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Re: DrSclafani answers some questions

Postby drsclafani » Wed Mar 20, 2013 12:15 pm

NZer1 wrote:Hi Dr S.

Have there been any studies on valves over time? Valves that have not been touched/PTA'ed to see if there are any changes in their performance or function?


Separate question;
If after PTA the valve re-stenosis' then is it valve related or incomplete destruction of valve and annulus or is it another area that was previously unseen or missed?



Personally, i think that valve restenosis may occur for severl hypotheses
1. thrombus formation on the treated valves leads to scar tissue or adhesions between the valve leaflets
2. the valve stiffness results in gradual recoil into stenotic valves
3. incomplete treatment did not relieve the original obstructing process.


I am wondering if there may be an issue with the valves and that thickening or generally non functioning valves may be changing over even short periods of time eg the 're-stenosis' average after PTA.

If for instance in normal life the function of the valve waxes and wanes like MS does!


1. J Physiol Heart Circ Physiol. 2008 Jun;294(6):H2480-8. doi: 10.1152/ajpheart.91431.2007. Epub 2008 Apr 4. Mouse heart valve structure and function: echocardiographic and morphometric analyses from the fetus through the aged adult. Hinton RB Jr, Alfieri CM, Witt SA, Glascock BJ, Khoury PR, Benson DW, Yutzey KE.

This study showed that there were very dynamic changes in valve composition during fetal life that stabilized except for progressive thinning during mature life with gradual annular thickening in late life.

2. Circulation. 2006 Mar 14;113(10):1344-52. Human semilunar cardiac valve remodeling by activated cells from fetus to adult: implications for postnatal adaptation, pathology, and tissue engineering. Aikawa E, Whittaker P, Farber M, Mendelson K, Padera RF, Aikawa M, Schoen FJ.

This study concludes that the cells in fetal valves are dynamic but that cells in adult valves become very quiet and that thickening is due to collagen maturation in an extracellular manner.



improbable

It is mysterious how this disease is fluctuating in two scenarios, one to a healthy lifestyle (change) and two with PTA and both are very similar outcomes symptomatically ;)

i am not sure that they are that similar.

Now that White Matter lesions are found to be less connected to MS disease symptoms there may at last be a shift to measuring actual symptoms! This 'should' help find the tools to measure PTA benefits with a 'real' assessment.

:)
Nigel





NIgel, relapse rate may have nothing to do with the valves, but rather to an underlying autoimmunity resulting from the orginal insult even if valves are no longer stiff, and obstructed. symptoms, on the other hand, may be altered by opening up the valve and improving arterial inflow, cerebral perfusion and CSF drainage.
Diet changes and medications seem to alter the relapse rate and in some even halt progression, so could that mean the flow has improved without PTA?

yes
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Re: DrSclafani answers some questions

Postby drsclafani » Wed Mar 20, 2013 12:17 pm

Cece wrote:I hope you had a pleasant birthday!

You've got a question that landed in this thread: chronic-cerebrospinal-venous-insufficiency-ccsvi-f40/topic21128-30.html#p205902

The worst news this week, or any week, was that we've lost the Greek from the D. Wheelchair Kamikaze has a memoriam up: http://www.wheelchairkamikaze.com/2013/ ... oriam.html

yes very sad. his disease was so very aggressive. I enjoyed his wit and his courage.

Greek, we will share some gabagole when next we meet.
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Re: DrSclafani answers some questions

Postby drsclafani » Wed Mar 20, 2013 12:27 pm

NZer1 wrote:
Cece wrote:I hope you had a pleasant birthday!

You've got a question that landed in this thread: chronic-cerebrospinal-venous-insufficiency-ccsvi-f40/topic21128-30.html#p205902

The worst news this week, or any week, was that we've lost the Greek from the D. Wheelchair Kamikaze has a memoriam up: http://www.wheelchairkamikaze.com/2013/ ... oriam.html


Thanks Cece for posting both of these.

Dr S I have been reading up on the research that shows infection is an early co-incident factor in heart attacks and strokes and I find that there is lots of talk about spasms in arteries.

*Does this also effect veins?

The work being done regarding vein health is indicating that the valve issues are more related to general vascular health. The research on diet, vit D, stress etc is really an extension of after the fact issues through life that have negative cumulative effects that create the problems you are treating. For instance endothelial health improvement is a must for CCSVI success!

My talking around the traps tells me that the doppler findings of CCSVI are actually changing over time (month by month), not fixed or only worsening. They are transient which makes sense for some of the findings.

The 'possibility' that plaque build up due to infection causing the fluctuating stenosis findings is very realistic. The process of build up and leakage of fluid plaque and then clots is a strong possibility for the waxing and waning post PTA. The collagen changes are an indication of healing from inflammation, which is likely to be caused by infections by pathogens such as Lyme and CPn bacteria.

*Do you see similarities in vein walls that correspond with artery spasms?

*And is there research and studies indicating vein wall spasm?

:)
Nigel

nigel, there is little muscle in the vein wall, so not the same as arteries. Spasam can occur but it is distinctly less common than arteries..
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Re: DrSclafani answers some questions

Postby drsclafani » Wed Mar 20, 2013 12:31 pm

Cece wrote:
Nigel wrote:My talking around the traps tells me that the doppler findings of CCSVI are actually changing over time (month by month), not fixed or only worsening. They are transient which makes sense for some of the findings.

I interpret that as the doppler being unreliable, not as the CCSVI abnormalities changing. It might also be due to the doppler technicians looking at vein wall narrowing, which could be physiological or transient depending for example on hydration, instead of looking at intraluminal abnormalities, which are fixed? I agree that infection if it is present would be bad for endothelial health.

I am waiting for Dr. Sclafani to return to see if he has any thoughts about the ASTRAL trial, which is not directly related to CCSVI! The ASTRAL trial was a trial on endovascular treatment of renal artery stenosis. It was a big randomized trial and it got negative results. In the ASTRAL study, during patient selection, they skimmed off the worst cases and did not include them because it was known that they needed to get endovascular treatment and so it would not be ethical to include them in a randomized trial. So the entire trial was only on the borderline cases and it got negative results, so maybe borderline cases of renal artery stenosis don't need to be treated or maybe more research is needed.

What if including borderline cases in the CCSVI trials is going to result in negative results? Would it be possible or practical for the selection criteria for CCSVI trials to use only people like me and Tiltawhirl who had nearly complete bilateral jugular stenosis? The up side would be that improvements might be more easily captured; it might be a proof-of-concept which is taking so so long to happen. The down side would be that the results might only apply to those of us with severe bilateral jugular stenoses.

Also if the need for funding is what is holding everything up, then how do we make that happen? Do you know what the NIH needs to see before it will fund CCSVI research?


cece, a large enough trial would be able to stratify patient response by degree of stenosis. we cannot preselect patients and unfortunately at the moment we cannot predict who will ultimately have the miracle cures.
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Re: DrSclafani answers some questions

Postby drsclafani » Wed Mar 20, 2013 12:33 pm

NZer1 wrote:Thanks Cece,
I think that same operator, same machine will decide the question. From what I understand the example I showed you in the PM is how there will be more definitive answers.

Question for Dr S,
** if people have atherosclerosis of arteries does that also effect capillary beds and then veins down stream?

The variety of findings from IVUS is very broad and I wonder what is the reason for the findings such as valve leaflet hardening and thickening as a group finding. Collagen involvement and fibrin increase points more to infection from my reading.

So there may be a subset of findings that relate to for instance infection and other subsets as well that are categories such as genuine malformation from birth like webs and septums.

The outcome (aka lesions of brain tissue) from impeded flow could generally speaking be from reflux within the outflow system which breaches the vein wall integrity.

The examples of less rapid reflux and impeded flow would also cause ischemia and low oxygen levels.

The repetitive damage at a cellular level will cause inflammation which will increase a cyclical pattern and that in turn will create a cascade effect as the repeating inflammation effects more tissue. Then that inflammation area is ripe for infection by opportunistic infection (bacteria) and also spread of any pre-existing infection such as atherosclerosis (CPn co-incidence finding in atherosclerosis) up stream of the new inflammation site.

Various diseases are the outcome of the variety of pieces in the matrix of 'causing factors' which require time, then once Medical Science decides on the label for the symptom expressions you have a name for the de-generation disease.

Does this sound like your findings?

Nigel
:)

nigel, i cannot answer your hypothesis. I could be wrong, but I am unconvinced that what i am seeing is the result of infection.
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Re: DrSclafani answers some questions

Postby drsclafani » Wed Mar 20, 2013 12:37 pm

EJC wrote:
Robnl wrote:Hi Doc,

Premise study show bad results....makes me think of a statement you made once; 'all coming trials miss an experience ccsvi-treating doctor, so results will not be good'...or something like that.
Is this trial an example?

On the other hand; Zivadinov, Zamboni, Simka, Sclafani.....i would expect that Zivadinov would 'use' an experience doc as he knows 'those' docs...

Opinion??

Rgds,

Robert


The flaw with using someone that knows what they are doing that has been involved in the theory and treatment from an early stage is the need for transparency and for results that can be replicated by others. These are the two biggest requirements of any study of this nature. They are also the most difficult to overcome.


I cannot a gree that inexperience is necessary for a unbiased trial. Operators cannot be blinded to the procedure they are performing, patients have to be blinded to the procedure that is being done. assessing neurologists or other non-treating physicians also need to be blinded from knowing which patients were treated.

a randomized multicenter trial would resolve differences in experience among operators.

Unlike a drug trial which is generally funded and run by the manufacturer of the product being trialed who can then chose which data or parts of data they want published.

It's not a level playing field.[/quote]
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Re: DrSclafani answers some questions

Postby drsclafani » Wed Mar 20, 2013 12:39 pm

Cece wrote:The argument from the other side is that the experienced CCSVI IRs are inherently biased. Only inexperienced ones can be trusted as being independent.

Anyone heard from Dr. Sclafani lately? It's been awhile.

inexperienced treating physicians can certainly be biased.

we do not seek out inexperienced physicians to do trials! it would be unethical in my view

S
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Re: DrSclafani answers some questions

Postby Robnl » Wed Mar 20, 2013 11:36 pm

Feels like using à guy without drivers license to test à Ferrari ;-)
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Re: DrSclafani answers some questions

Postby tzootsi » Thu Mar 21, 2013 6:32 am

Welcome back Dr. S! What is your general take on the disappointing Buffalo study? What was the mood at ISNVD as far as CCSVI - optimism and hope for more research or continuing to fight a battle with the medical establishment?
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Re: DrSclafani answers some questions

Postby dlynn » Fri Mar 22, 2013 6:51 am

Dr. Sclafani,
Is it possible that muscle tension in the neck/shoulder area could cause compression of the vessels? Is a tension headache caused by constricted vessels? Could chronic leg pain be caused by an insufficient blood supply (somewhere)? Could poor blood supply also cause the myelin sheath to die?
Thank you

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Re: DrSclafani answers some questions

Postby drsclafani » Fri Mar 22, 2013 10:20 am

Robnl wrote:Feels like using à guy without drivers license to test à Ferrari ;-)


actually more like someone who just received a drivers license now going to drive a ferrari in a midtown street
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Re: DrSclafani answers some questions

Postby drsclafani » Fri Mar 22, 2013 10:30 am

tzootsi wrote:Welcome back Dr. S! What is your general take on the disappointing Buffalo study? What was the mood at ISNVD as far as CCSVI - optimism and hope for more research or continuing to fight a battle with the medical establishment?


it is a piece of the puzzle.

It does document scientifically what happens when someone who has treated only 9 patients does a study.

We all remember the problems that occurred early in 2010, unnecessary stents, missed diagnoses, over and under dilatation, inadequate anticoagulation, prolonged 5-10 minute inflations, thromboses, to name a few.

The mood was complicated. excitement, discouragement, resentment, hope,, collegiality, frustration, and dogged determination to seek the truth.

fight with the medical establishment? Me? I look forward to

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