DrSclafani answers some questions

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Re: DrSclafani answers some questions

Postby miri » Mon May 27, 2013 10:46 am

drsclafani wrote:
NHE wrote:
miri wrote: OK, I finally checked them out, and I vote most for Rogan's video's since they quickly explain to novices what it's all about. Granted the others are amazing before-and-after's... but I was seeking more in the line of a quick education.
Hey, even Rogan's could have been condensed by a professional into one shorter video showing the "meat" of the matter. To give an unrelated example, I think the below parchment-cone video is better than the more-popular parchment-cone video's, since it offers "instant yet concise education" - see what i mean?
http://www.youtube.com/watch?v=i-rb4BR_dgI)


I doubt that you're ever going to find a step-by-step "do it yourself at home" CCSVI video. Instead, read some of Dr. Sclafani's several case study posts. These are a invaluable resource for people wishing to learn about CCSVI.


Thanks for the compliment. It deserves a response and here is an interesting case from this past week.

A 35 year old Canadian man..................
.................I wait very impatiently to learn whether stenting of recurrent stenosis has been helpful.

Any questions?

DrSclafani


drsclafani wrote:there are nearby important structures that might be affected by doing this including the muscles of breathing and swallowing. My brother is a plastic surgeon so there is no reason not to do this except continued questions about its risks

Dr.Sclafani, thanks! This mention of botox is interesting, because I once asked my dentist why (since people with Dead Teeth do not feel pain), why can't they administer Botox for people who have constant tooth pain - the kind which xrays never discerned, even when 2 kineseologists did! Some peoples' bodies automatically Eject bad teeth, or turn them "dead". But what about those of us stuck with unremitting pain? The dentist found my Q interesting, but had no answer as to why dentistry does not offer Botox.

Regarding the stenosis reverting back to its original configuration:
Does this mean that Stenosis fibers are sorta like a rubber band (since scar tissue has flexible plasticity), and that a strong balloon actually has the capability of RESHAPING SCAR TISSUE - LIKE A STRETCHED RUBBERBAND GETS RESHAPED, so that the Reshaped Configuration stays that way??

In response to dlynn, re: the long air flight:
It's probably hopeless for me to say this, because most people relate to whichever frames of reference they've latched onto for a significant period of time. But for the record, I see a correlation in the air flight triggering re-stenosis, and testimonies I read of people with electrosensitivity. Air flight affects them too, as it does the elderly. So have you considered the EMF factor, rather than just the altitude? Granted. electrosensitives have gotten relief from moving to lower/WARMER altitudes, but they have also strongly been affected by EMFs. Airplanes have alot of EMFs.
Not only that, but EMFs of my computer cause me to feel Tarsal Tunnel in my Feet NOT JUST my wrists!!
...But also (and quite obvious) is that staying seated affects circulation, whereas walking around the plane (and computer breaks) restores same.

Which brings to the fore this question: Was Dr.Sclafani's current patient overexposed to EMFs within a short period after having undergone venoplasty? No matter how skeptical everyone here is, I'm still curious. In fact, the patient's symptoms very much resemble some electrosensitives, and also some fibromyalgics.

P.S. I still think a short-version of Rogan's video is best for newbs, and yes I know that CCSVI ain't no cone (to quote you), but I was just giving the cone-video as a demo of what [at least some] newbs appreciate, if they're like me. I myself lack the discernment to detect abnormalities in live xrays. Within these past weeks, btw, I was checked out via venous doppler & arterial doppler, from my feet through my thigh joints. The results were normal (which surprised me, considering my excruciating pain in arches & inner thigh joints). The techie who gave me the test never heard anyone scream in such agony. It's as if I have shrapnel or calcified Lyme or nanobacterial microcalcifications or mercury/metals distributed randomly in my tissues). Ridiculously and expectedly, what tested abnormal for me was elevated cholesterol and low D3.
As if I didn't have my pains for decades already, even when I was thin & my cholesterol low!!
As if D3 supplements have helped me, even when I took D3 steadily.

What a joke - take someone filled with shrapnel, whose nerves are majorly damaged from four decades of inflammations, how is D3 supposed to help? Even all-powerful stem cells need a proper communication system to know where to go. But the QXCI diagnosed me with "blocked homeopathic links due to toxic exposure", so barring communication links, how would stem cells know where to go? Which is probably why 66% fail to get helped via stem cells.
Reachable via PM. Seems I have Higbee's HSII on ThisIsMS. Frustrated by MSers, FMers, Lymers & Prematurely-Aged-By-EMFers who prefer cryptic jargonian Systems Vs. Intuitive empirical experience. Don't simple truths count for anything anymore?
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Re: DrSclafani answers some questions

Postby NHE » Sat Jun 01, 2013 12:25 am

drsclafani wrote:
NHE wrote:
drsclafani wrote:Any questions?


The last photo of the RIJV in the May 18th series looks like the flow is still getting caught up even in the presence of a stent. Is this correct? Did you use IVUS and, if so, what did it show?


one cannot tell from a static single image whether the contrast media is caught up. I put up an image to filled the stent. Rest assured that there was no reflux or hang up of the contrast.


OK. Thanks for the clarification.

drsclafani wrote:I did not use IVUS during this procedure. We were trying to reduce the costs. The IVUS catheter itself costs almost US$1000
i use the prior IVUS for its information and most of the time it is sufficient. If I thought it would be critical information I would have used it.

However, please understand that IVUS does not measure flow. It is not a doppler devce.


Yes, I'm aware that IVUS shows structure and not flow. It's great that you had the prior IVUS scan available. I did not see mention of this in the case report or perhaps I missed it.

NHE
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Re: DrSclafani answers some questions

Postby tzootsi » Wed Jun 05, 2013 6:01 pm

Hi Dr, are you still putting something together on the non-responder issue?
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Re: DrSclafani answers some questions

Postby aliki » Sun Jun 09, 2013 2:32 am

Reading all these about the muscle and the ccsvi I was wondering if my case is one of those who have that problem . After the second angioplasty in America by you , there are many days that I feel a pain in my neck even that 9 months have passed . I think it is a muscle pain and maybe this has something to do with my veins and the fact that I have done 2 times the ccsvi procedure and the vein have a restenosis . I have lost the one vein because of a clot and now the second does not answer to the angioplasty . How can I learn if I have a muscle problem?
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Re: DrSclafani answers some questions

Postby vesta » Sun Jun 09, 2013 7:36 am

Hello Aliki:

I've come to the conclusion there are 3 major causes of the blood reflux 1) toxicity (e.g. dietary -see above)
2) skeletal and 3) vein stenosis (Dr. Zamboni's CCSVI).

Toxicity you can deal with yourself, though good guidance will help.

If the problem is skeletal body manipulators such as chiropractors and osteopaths may be needed. Dentists treat jaw misalignments which may interact with upper cervical misalignements. (Recent observations about cranial fluid dynamics, the possibility that cerebrospinal fluid build-up can "pressure" venous blood
circulation leading to a blood reflux implies that attention should be paid to
all aspects of brain physiology. In fact, before considering angioplasty, I
believe one should consult specialists in skeletal adjustment - chiropractors,
osteopaths, dentists - whose manipulations might release blocked blood/fluid
circulation from the head and spinal cord. This is especially important if the
MS develops after an accident. In such cases the problem does not reside IN the vein but
pressure ON the vein.)

Vein stenosis will require venoplasty, the use of a catheter to open and "balloon" a "stenosed" vein. This requires a competent, experienced interventional radiologist. I would eliminate the other possibilities before trying this, and it could well take a year to come to this decision.
For further information check out the site ThisIsMs.com. 2) Skeletal issues are discussed under "CCSVI and CCSVBP" a) upright doc (Dr. Michael Flanagan) and b) "When CCSVI fails try AO and/or the Dentist" by Rosegirl.
2) Skeletal issues are discussed under "CCSVI and CCSVBP" a) upright doc (Dr. Michael Flanagan) and b) "When CCSVI fails try AO and/or the Dentist" by Rosegirl. "

I'm sorry to hear you are having so many problems after having tried so hard to get treatment. It may be a problem of pressure on the vein rather than a problem in the vein. Dr Flanagan has alot to say about this, so maybe you can ask him what to do. (upright doc)

MS Cure Enigmas.net

Hello Aliki: I just want to direct you to Dania on the Rosegirl post "When CCSVI fails try AO and/or the Dentist" because her veins were damaged after angioplasty but she has since had good results with Chiropractic manipulation.
Last edited by vesta on Mon Jun 10, 2013 9:12 am, edited 3 times in total.
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Re: DrSclafani answers some questions

Postby aliki » Sun Jun 09, 2013 3:25 pm

Dear vesta, thank you very much for your answer . I was wondering who should I ask in order to learn if this happens to me and if this happens what should I do ?
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Re: DrSclafani answers some questions

Postby Cece » Mon Jun 10, 2013 6:33 am

Still with us, Dr. Sclafani?
We've come quite a ways since June 2010 when everything seemed to hang on the yes/no of an IRB.
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Re: DrSclafani answers some questions

Postby dlynn » Tue Jun 11, 2013 12:53 pm

Dr. Sclafani,
I too, hope you're "Still with us".
What are your thoughts regarding a 5th CCSVI procedure? If one has a return of symptoms alleviated by the procedure,
is it likely there's a problem again with blood flow? And you would consider the procedure?
thank you
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Re: DrSclafani answers some questions

Postby Cece » Wed Jun 12, 2013 10:47 am

Just got an email about the National CCSVI Society conference, upcoming in September in Sherbrooke, Quebec, with Dr. Sclafani as keynote speaker.

chronic-cerebrospinal-venous-insufficiency-ccsvi-f40/topic22442.html
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Re: DrSclafani answers some questions

Postby EJC » Sat Jun 15, 2013 4:45 am

Hi Dr S,

I've just posted the following on another thread on here and would like your opinion/ideas, even if that means "I don't know!". Mainly as it would be you we would see if Emma decides to go with a repeat procedure.

Quote:-

So this week Emma visited an orthoptist at our local hospital to see if they could tie down the issues of her eyesight.

After a 15 - 20 minute exam she was diagnosed with http://en.wikipedia.org/wiki/One_and_a_half_syndrome.

It was then explained to Emma that there really is nothing that medicine can do to help this condition. Botox injections into the offending muscle behind the eye may or may not help and may or may not last a matter of weeks/months before repeat injections are required.

This is a blow, Emma had physically improved so much with Jaw and Atlas treatment from Dr Amir that finding regression in Emma's eyesight is frustrating.

Her last visit to see an opthalmic surgeon was coincidentally only a few weeks before Emma had CCSVI treatment in Scotland in 2010. Having read the notes on Emma's condition back then the orthoptist said she had returned to her pre CCSVI treatment level of eyesight.

This now brings up the obvious question in our minds. Do we now repeat the CCSVI procedure purely looking for eyesight improvement?

This is a big deal for us now as the procedure is no longer available in the UK, so our clinic of choice would be Dr Sclafani based on his standing within CCSVI and his contribution and willingness to communicate with patients on here. We also need to beg and borrow the money to do this - so cost is the number one issue for us.

When Emma initially had the CCSVI procedure in 2010 the eyesight improvements were the single biggest (and unexpected) improvement. The effects of this procedure lasted a little over 24 months before reappearing and 30 months before returning to pre procedure levels.

Emma was patient number 39 in Edinburgh, this was the infancy of CCSVI in the UK and pretty much worldwide and at the time they were being, quite rightly, cautious in treatment. To that end it is reasonable to assume that based on knowledge available now that Emma was under treated and that a repeat procedure may offer similar and hopefully more permanent improvements.

Would we be mad considering a CCSVI procedure simply to deal with an eyesight issue? This is a £10,000 ($15,000) punt on solving the issue. If it works it's money well spent, if it doesn't we'd be pretty frustrated.
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Re: DrSclafani answers some questions

Postby drsclafani » Mon Jun 17, 2013 7:18 pm

NHE wrote:
The last photo of the RIJV in the May 18th series looks like the flow is still getting caught up even in the presence of a stent. Is this correct? Did you use IVUS and, if so, what did it show?


drsclafani wrote:one cannot tell from a static single image whether the contrast media is caught up. I put up an image to filled the stent. Rest assured that there was no reflux or hang up of the contrast.


NHE wrote:OK. Thanks for the clarification.


drsclafani wrote:I did not use IVUS during this procedure. We were trying to reduce the costs. The IVUS catheter itself costs almost US$1000
i use the prior IVUS for its information and most of the time it is sufficient. If I thought it would be critical information I would have used it.

However, please understand that IVUS does not measure flow. It is not a doppler devce.


NHE wrote:Yes, I'm aware that IVUS shows structure and not flow. It's great that you had the prior IVUS scan available. I did not see mention of this in the case report or perhaps I missed it.

NHE


Regrettably, In followup, patient had some improvements that again lasted about one week. He could not have re-stenosed the valves since the stent maintained vein opening. So that leaves us with placebo effect, some short term clearance of toxin or improved perfusion or a critical sclerotic lesion that is not reversible
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Re: DrSclafani answers some questions

Postby drsclafani » Mon Jun 17, 2013 7:29 pm

vesta wrote:Hello Aliki:

I've come to the conclusion there are 3 major causes of the blood reflux 1) toxicity (e.g. dietary -see above)
2) skeletal and 3) vein stenosis (Dr. Zamboni's CCSVI).

Toxicity you can deal with yourself, though good guidance will help.

If the problem is skeletal body manipulators such as chiropractors and osteopaths may be needed. Dentists treat jaw misalignments which may interact with upper cervical misalignements. (Recent observations about cranial fluid dynamics, the possibility that cerebrospinal fluid build-up can "pressure" venous blood
circulation leading to a blood reflux implies that attention should be paid to
all aspects of brain physiology. In fact, before considering angioplasty, I
believe one should consult specialists in skeletal adjustment - chiropractors,
osteopaths, dentists - whose manipulations might release blocked blood/fluid
circulation from the head and spinal cord. This is especially important if the
MS develops after an accident. In such cases the problem does not reside IN the vein but
pressure ON the vein.)

Vein stenosis will require venoplasty, the use of a catheter to open and "balloon" a "stenosed" vein. This requires a competent, experienced interventional radiologist. I would eliminate the other possibilities before trying this, and it could well take a year to come to this decision.
For further information check out the site ThisIsMs.com. 2) Skeletal issues are discussed under "CCSVI and CCSVBP" a) upright doc (Dr. Michael Flanagan) and b) "When CCSVI fails try AO and/or the Dentist" by Rosegirl.
2) Skeletal issues are discussed under "CCSVI and CCSVBP" a) upright doc (Dr. Michael Flanagan) and b) "When CCSVI fails try AO and/or the Dentist" by Rosegirl. "

I'm sorry to hear you are having so many problems after having tried so hard to get treatment. It may be a problem of pressure on the vein rather than a problem in the vein. Dr Flanagan has alot to say about this, so maybe you can ask him what to do. (upright doc)

MS Cure Enigmas.net

Hello Aliki: I just want to direct you to Dania on the Rosegirl post "When CCSVI fails try AO and/or the Dentist" because her veins were damaged after angioplasty but she has since had good results with Chiropractic manipulation.

Aliki
Your case is very complicated, I do not want to discuss the details of your case history on this site, although you may if you wish.

because Vesta's response to you is on the "DrSclafani answers some questions" thread, i want to be very clear that i do not endorse Vesta's commentary because I am dissatisfied with the current evidence and its presentation.

I am not clear as to the relative roles of chiropractic, dental manipulations, muscle entrapments "toxins"in your situation.
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Re: DrSclafani answers some questions

Postby drsclafani » Mon Jun 17, 2013 7:50 pm

Cece wrote:Still with us, Dr. Sclafani?
We've come quite a ways since June 2010 when everything seemed to hang on the yes/no of an IRB.


Yes cece, i am still here.

I remember that time. The demand for a randomized prospective sham armed placebo controlled was too much at that time. Arrogant demands by righteous scientists who could not see that this was a procedure not a drug and that the process of procedural discovery and proof takes a different methodology

It is very clear to me that we are on the right path, slower but inevitable.
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Re: DrSclafani answers some questions

Postby drsclafani » Mon Jun 17, 2013 8:09 pm

dlynn wrote:Dr. Sclafani,
I too, hope you're "Still with us".
What are your thoughts regarding a 5th CCSVI procedure? If one has a return of symptoms alleviated by the procedure,
is it likely there's a problem again with blood flow? And you would consider the procedure?
thank you


if one has improvements of symptoms by the procedure, then the procedure has shown its efficacy.We do what we h ave to do. We treat other venous diseases every six months. The difference between CCSVI and other venous diseases is that insurers pay for treatment of these other diseases but the patient with CCSVI must pay out of pocket. It makes a big difference in how we approach this

DrS
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Re: DrSclafani answers some questions

Postby drsclafani » Mon Jun 17, 2013 8:58 pm

EJC wrote:Hi Dr S,

I've just posted the following on another thread on here and would like your opinion/ideas, even if that means "I don't know!". Mainly as it would be you we would see if Emma decides to go with a repeat procedure.

Quote:-

So this week Emma visited an orthoptist at our local hospital to see if they could tie down the issues of her eyesight.

After a 15 - 20 minute exam she was diagnosed with http://en.wikipedia.org/wiki/One_and_a_half_syndrome.

It was then explained to Emma that there really is nothing that medicine can do to help this condition. Botox injections into the offending muscle behind the eye may or may not help and may or may not last a matter of weeks/months before repeat injections are required.

This is a blow, Emma had physically improved so much with Jaw and Atlas treatment from Dr Amir that finding regression in Emma's eyesight is frustrating.

Her last visit to see an opthalmic surgeon was coincidentally only a few weeks before Emma had CCSVI treatment in Scotland in 2010. Having read the notes on Emma's condition back then the orthoptist said she had returned to her pre CCSVI treatment level of eyesight.

This now brings up the obvious question in our minds. Do we now repeat the CCSVI procedure purely looking for eyesight improvement?

This is a big deal for us now as the procedure is no longer available in the UK, so our clinic of choice would be Dr Sclafani based on his standing within CCSVI and his contribution and willingness to communicate with patients on here. We also need to beg and borrow the money to do this - so cost is the number one issue for us.

When Emma initially had the CCSVI procedure in 2010 the eyesight improvements were the single biggest (and unexpected) improvement. The effects of this procedure lasted a little over 24 months before reappearing and 30 months before returning to pre procedure levels.

Emma was patient number 39 in Edinburgh, this was the infancy of CCSVI in the UK and pretty much worldwide and at the time they were being, quite rightly, cautious in treatment. To that end it is reasonable to assume that based on knowledge available now that Emma was under treated and that a repeat procedure may offer similar and hopefully more permanent improvements.

Would we be mad considering a CCSVI procedure simply to deal with an eyesight issue? This is a £10,000 ($15,000) punt on solving the issue. If it works it's money well spent, if it doesn't we'd be pretty frustrated.



That is not an easy question. Worth is something that only you can judge. Obviously, for a radiologist one's vision is priceless. The wonderful ophthalmologic response to angioplasty was very impressive. I am not sure of mechanism of neurological restoration. was it improved csf drainage or improved perfusion? Can we anticipate the same result? Impossible to predict. Better, worse no change

Let's not get into the fee speculation

So i guess i cannot answer your question for you

DrS
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