DrSclafani answers some questions

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

Re: DrSclafani answers some questions

Postby vesta » Thu Oct 11, 2012 7:20 am

On April 22, 2012 I wrote the following on my blog for MS Cure Enigmas.net

I resumed the “paleo-macrobiotic”, veggie juice, gluten free diet around January 17, 2012. Mid March the muscles on the outside of my right leg began to cramp up and “work”. I could pull the leg up in physical therapy without simply using the Quadricep thigh muscle. I was surprised that after only 2 months of detox diet part of the dormant nervous system began to work. (The first time around in 1984-85 it took a year for “dead” nerves to work.)

It doesn’t really make sense that the myelin sheath would heal in such a short time. Then late March I developed a bladder infection which weakened me and eventually I took antibiotics to treat it. As usual this threw my Acupuncture meridians out of balance, my bladder didn’t empty well, my legs were clumsy. Were the nerves affected, or simply the meridians which control the muscles? Also the recent improvement in the leg disappeared. Once off the antibiotics, my legs and balance strengthened and 2 days later the muscles outside the leg reaching into the buttocks began cramping again and appeared to be working. Are these the nerves? My own impression is that the“blocked” blood flow has resumed to nourish the brain. Maybe the problem isn’t simply a question of periodic blood refluxes but insufficient blood flow into the brain (of course this corresponds to my theory that the circulatory system is “stunted” or insufficient in MS). According to Kinesiology, when the body’s energy circulation is “unbalanced”, blockages can occur everywhere, not just the muscles. Perhaps by removing substances my body cannot tolerate,the energy system re-establishes itself, and the blood can nourish the brain correctly. We shall see. I am surprised at such a rapid response to diet change. I wonder how far it will take me? "

This improvement parallels Dr Slafani's surprise that improved blood flow alone could impact the nervous system favorably even in the face of de-myelization. Of course my treatment implies what I call "toxic MS", that toxicity (food intolerances, aspartame etc) can actually impede blood flow and removal of the the toxins can liberate the flow. I mention Acupuncture
Meridians as impacting blood flow, but that idea just throws traditional researchers off balance. So let's just say that my experience tends to parallel Dr. Sclafani's observations that improved blood flow enhances nervous system activity.
Vesta
vesta
Family Elder
 
Posts: 347
Joined: Thu Jul 12, 2012 9:10 am
Location: Paris, France

Advertisement

Re: DrSclafani answers some questions

Postby NZer1 » Thu Oct 11, 2012 10:32 am

Hi Vesta,
Yesterday I put four articles on my Face Book page that I believe answers you questions.
https://www.facebook.com/pages/CCSVI-in ... 84?fref=ts

If antibiotics change the symptoms and increase the symptoms then there is something else happening.

There is a die off effect, an endo-toxin release or a Herxheimer effect happening and that is a clue that there is a combination or multi faceted puzzle with MS.

If CCSVI/PTA treatment has made a difference to symptoms and then that improvement wanes, that in my opinion indicates that there is more than one factor determining the stenosis and more than one factor causing symptoms.

CCSVI on its own would not logically make an improvement on its own for two reasons in my opinion.
1. If the drainage was that bad or the reflux that bad in veins used only or mostly when lying down there would be benefit in all patients undergoing PTA.
2. People with Doppler tests indicating CCSVI drainage flow problems would share symptoms across the board, and Alzheimers patients for instance who have more incidence of CCSVI Doppler testing 'faults' would have a symptom profile closer to MS and there would be lesions in both diseases with Dawson's Fingers.

So the CCSVI stenosis has to be 'in combination' with something else, 'maybe' an infection that has crossed the brain lesion into the BBB protected CNS, or 'maybe' the CCSVI stenosis was caused by something else and that has started a cascade of symptoms and measurable damage.
User avatar
NZer1
Family Elder
 
Posts: 1522
Joined: Thu Feb 18, 2010 3:00 pm
Location: Rotorua New Zealand

Re: DrSclafani answers some questions

Postby vesta » Fri Oct 12, 2012 10:40 am

Hi NZer1:
I'm not comfortable with Facebook so I couldn't look up your articles. Sorry. The antibiotics issue isn't the point. ANYTHING my body finds toxic can impede the blood flow which in my case includes glutens and alcohol (That's why I probably fell apart when I moved to France, great bread, great wine, cuisine in general.)

On his thread dated April 3, 2012 Dr Sclafani wrote

"There are other malformations of veins that are well known. They include problems with the veins of the liver as they join the inferior vena cava. This well known entity is called Budd Chiari syndrome and results in major problems of the liver.

"The SPINAL CORD has an interesting venous drainage. There are small veins that exit the spinal cord and enter venous plexuses that surround the spine and vertebrae. (A venous plexus is a tangle of very small venous channels
and lakes. )These plexuses connect up and down the spine. Some then drain out into larger more defined veins. These veins can drain upward into the brain and then back down the venous sinues to the jugular vein. There are also veins that connect the cervical plexuses to the upper jugular vein itself. The cervical venous plexus also drains into the vertebral veins and they connect to the subclavian or innominate veins. lower down in the thoracic spine these plexuses drain into veins that connect to intercostal veins and hemiazygous and azygous veins. Lower down still there are veins that connect the vertebral veinous plexuses to lumbar veins, ascending lumbar veins, and the inferior vena cava and lots of other veins."
hol

These are questions for Dr. Sclafani.
1)It seems to me there are many more veins which can malfunction than the jugulars, vertebrals and azygous.. Would this account for the disappointing results for some patients after Angioplasty, that not all potential CCSVI pathologies can be discerned or treated?
2) Is there a vein/brain/spine map, that is to say knowledge of which area of the CNS controls which bodily function and which veins link up to those areas? Probably not, but thought I would ask.
3) Does a CCSVI blood reflux resemble a stroke in terms of brain damage and immune system reaction?
Thanks for your help. Vesta
MS Cure Enigmas.net
Last edited by vesta on Mon Oct 15, 2012 6:46 am, edited 1 time in total.
vesta
Family Elder
 
Posts: 347
Joined: Thu Jul 12, 2012 9:10 am
Location: Paris, France

Re: DrSclafani answers some questions

Postby Cece » Fri Oct 12, 2012 11:51 am

Any thoughts on ECTRIMS? Do you think you'd consider attending ECTRIMS next year? It is a leading conference on MS, and it never hurts to learn more about MS.

Will you be submitting abstracts to ISNVD or ISET or SIR this year?
Cece
Family Elder
 
Posts: 9040
Joined: Mon Jan 04, 2010 3:00 pm

Re: DrSclafani answers some questions

Postby allynz » Fri Oct 19, 2012 1:20 am

For anyone wondering why it is so quiet around here Dr S is currently in China at a ccsvi conference of some kind I believe. I think he was going to be out of town for 2 weeks.
allynz
Family Member
 
Posts: 37
Joined: Mon Apr 30, 2012 12:30 am

Re: DrSclafani answers some questions

Postby Robnl » Fri Oct 19, 2012 2:43 am

yes, he left Tuesday 9 Oct, 2 weeks China and then a week vacation
User avatar
Robnl
Family Elder
 
Posts: 438
Joined: Sun Nov 08, 2009 3:00 pm

Re: DrSclafani answers some questions

Postby CureOrBust » Fri Oct 19, 2012 5:18 am

NZer1 wrote:If antibiotics change the symptoms and increase the symptoms then there is something else happening.
There is a die off effect, an endo-toxin release or a Herxheimer effect happening and that is a clue that there is a combination or multi faceted puzzle with MS.
do not forget that Flagyl is also a neuro-toxic, so the "something happening" may not be "die-off".
User avatar
CureOrBust
Family Elder
 
Posts: 2923
Joined: Wed Jul 27, 2005 2:00 pm
Location: Sydney, Australia

Re: DrSclafani answers some questions

Postby 1eye » Fri Oct 19, 2012 8:45 am

The following is just my opinion. I don't have any facts to back this up.

What I think is that immediate improvements come from increased oxygen and glucose supply, partly, but also from relief of excess pressure.

The blood in the brain cannot get out fast enough, especially when the heart is working hard, and the veins inside the brain distend above the stenosis. The skull closing the system, the CSF responds by flowing down, and eventually the pressure causes leaks of CSF from ventricles (lesions, dawson fingers). Long-term the brain is shrinking under pressure from non-compressible fluids, from the inside of the ventricle outwards. Nerves don't like pressure either, and the autonomic and other vulnerable nerves are being compressed. When the stenosis is removed, some of the compression goes away. The other method that might work is to shunt the pressure from the non-compressible CSF.

The pressure comes from two places. The heart, and gravity. In some, gravity will be slower causing damage than in others.

Since there is stenosis, the jugulars cannot pass any flow increases fast enough. If there is any flow in them, it will be there when you are upright as well as prone.

JMHO
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
User avatar
1eye
Family Elder
 
Posts: 2960
Joined: Wed Mar 17, 2010 3:00 pm
Location: Kanata, Ontario, Canada

Re: DrSclafani answers some questions

Postby NZer1 » Fri Oct 19, 2012 11:04 am

1eye Intracellular disease uses oxygen and glucose!
"What I think is that immediate improvements come from increased oxygen and glucose supply, partly, but also from relief of excess pressure."
User avatar
NZer1
Family Elder
 
Posts: 1522
Joined: Thu Feb 18, 2010 3:00 pm
Location: Rotorua New Zealand

Re: DrSclafani answers some questions

Postby vesta » Fri Oct 19, 2012 1:25 pm

RnRrider of the French ForSeps.org wrote a summary of the Italian MS Society's (AISM) 2 year "controlled" study of CCSVI which was recently presented at the Lyon ECTRIMS conference. Directed by the Neurologist Dr. Giancarlo Comi of the University of Milan and his colleagues, given the name CoSMo, 35 clinics in Italy participated while 107 clinics were excluded. Early on Dr Zamboni participated in the study but then pulled out, denouncing the protocols which he felt would lead to inaccurate, biased results. Apparently the only diagnostic tool was a Doppler Sonogram undertaken on 1,874 participants, 1,165 with MS, 376 controls and 226 other neurological diseases. Only 3 % of MS were "positive", slightly less for the controls. Conclusion, the CCSVI MS theory was pronounced dead and finished, this was their final word. (Interestingly, 89% of the positive results found at local clinics were declared invalid by the central examiners.) The Italian MS Society spent 2 million euros on the study. This is the first time that a national MS Society has definitively declared the CCSVI link to MS theory of no further value. (All but one of the principal researchers have links to major drug companies List to follow.)

It looks like the Semmelweis reflex is alive and well in Italy.

Comi declared having received consultation fees for participating in consulatitive comittees for Novartis, Teva, sanofi-aventis, Merck Serono, et Bayer Schering. Des honoraires de conférencier de Novartis, Teva, sanofi-aventis, Merck Serono, Biogen Dompé, Bayer Schering, et Serono Symposia International Foundation . Mancardi declared having received honoraries for conferences and fees for attending meetings as well as financial support for research with Bayer Schering, Biogen Idec, sanofi-aventis, Novartis et Merck Serono.
Stolz declared having no concerned financial interest.

MS Cure Enigmas.net

.
Last edited by vesta on Sat Oct 20, 2012 7:52 am, edited 1 time in total.
vesta
Family Elder
 
Posts: 347
Joined: Thu Jul 12, 2012 9:10 am
Location: Paris, France

Re: DrSclafani answers some questions

Postby David1949 » Fri Oct 19, 2012 6:44 pm

Another explanation might be that the doppler test in not effective for diagnosing CCSVI.
In many cases it shows nothing but the venogram shows CCSVI big time. My own case is one such example.
David1949
Family Elder
 
Posts: 645
Joined: Mon Aug 23, 2010 2:00 pm

Re: DrSclafani answers some questions

Postby Robnl » Sat Oct 20, 2012 12:58 am

Doppler is just an indication, inst. It?
User avatar
Robnl
Family Elder
 
Posts: 438
Joined: Sun Nov 08, 2009 3:00 pm

Re: DrSclafani answers some questions

Postby vesta » Sat Oct 20, 2012 1:22 am

Sonogram is one indication and not the best. Also note that 89 % of positive results detected by local clinics were rejected. A Neurologist tied to major drug companies directed the "study". This just reveals the opposition building to oppose a valid idea and treatment out of vested interest, also the "political" (as in power) obstacles we will need to overcome. So much for medical "science". Also note that Dr. Zamboni objected to the protocols and pulled out of the study.
vesta
Family Elder
 
Posts: 347
Joined: Thu Jul 12, 2012 9:10 am
Location: Paris, France

Re: DrSclafani answers some questions

Postby Robnl » Sat Oct 20, 2012 3:05 am

Is it wrong to thinking The Cosmostudy was a big effort to 'finish' Ccsvi?i
2 million euro and Zamboni part of the study?

Ah, did not work :mrgreen:
User avatar
Robnl
Family Elder
 
Posts: 438
Joined: Sun Nov 08, 2009 3:00 pm

Re: Reductions in spasticity after venplasty

Postby drsclafani » Sun Oct 21, 2012 8:51 am

MarkW wrote:
drsclafani wrote:Look at it this way.
There are symptoms that are commonly the result of CCSVI. These include chronic fatigue, cog fog, memory impairment, vision difficulties, imbalance and autonomic problems such as bladder problems (urgency, frequency, nocturia, hesitancy), purple feet and edema, and heat intolerance. To a much lesser degree, motor function, sensory problems,
These are symptoms commonly seen with MS: motor problems, with spasticity, sensory problems numbness and tingling, vision problems, cerebellar problems such as ataxia, imbalance, cranial nerve problems, chronic fatigue, cog fog, memory impairment, vision difficulties, imbalance and autonomic problems such as bladder problems (urgency, frequency, nocturia, hesitancy), purple feet and edema, and heat intolerance. To a much lesser degree, motor function, sensory problems,
So you see that symptoms of ccsvi and ms overlap. We can treat the ccsvi and have no significant clinical change if the symptoms were caused by MS.But if the symptoms were caused by CCSVI , treating the CCSVI can improve symptoms.
I have said all along that I treat CCSVI not MS. I wish it were simpler but I wont know for ten years whether treating CCSVI alters outcomes of MS
That being said, i recently have had two patients with severe spasticity which I believed were clearly due to demyelinization. To my surprise some improvements occurred after venoplasty. I still cannot figure out why this occurs.

Hello DrS,
You said that you cannot figure out why improvements in spasticity occurs after venoplasty. I suggest that the areas between 'CCSVI symptoms' and 'MS symptoms' have a large area of overlap. There are 'CCSVI symptoms' which could be considered as the result of reduced CSF flow and 'MS symptoms' which are the result of myelin (WM) damage. However there are reports of GM repair after venoplasty, any thoughts where they should be placed?
Also venoplasty could reduce compression on the vagus nerve, which may explain some improvements. Some venoplasty may reduce compression on other cranial nerves, as yet not considered in detail.
Here in Oxford there are two of us who are experiencing slow (months to years) improvements in spasticity, post venoplasty.
I am unsure what the mechanism could be, but I keep in mind that the human body tries to return to its steady state position (repair itself) when damage is stopped. Any thoughts?
I agree that we won't know for years whether treating CCSVI alters MS. I am hoping that after 5 years I will know if my spending on two venoplasties was a good bet or not.
Kind regards,
MarkW


That's great news mark. I think that your hypothesis is reasonable. Perhaps we really do not know how long improvement will take to manifest themselves
Salvatore JA Sclafani MD
Patient contact: ccsviliberation@gmail.com
User avatar
drsclafani
Family Elder
 
Posts: 3144
Joined: Fri Mar 12, 2010 3:00 pm
Location: Brooklyn, New York

PreviousNext

Return to Chronic Cerebrospinal Venous Insufficiency (CCSVI)

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: ALA, Robnl


Contact us | Terms of Service