DrSclafani answers some questions

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

Postby jimmylegs » Sun Apr 10, 2011 2:46 pm

Liberation wrote:Researchers do use mice and rats when they are examining relations between MS and D3 defficiency. So, I think it should be more carefully examined in this case as most of us are taking D3 suppliments. There are also too many scarring issues that we hear about.


it's hypercalcemia that kills the rats when they ingest d3.

hypercalcemia is not good for people either and thus the historical hoopla about d3 toxicity in humans.

yes, serum d3 levels of 250 nmol/L and higher put humans at risk for hypercalcemia. no, ms patients should not be aiming for serum d3 levels above 250 nmol/L.

according to research, ms patients should ensure levels are up over 100 nmol/L.

have i personally tested with serum d3 over 250 nmol/L? yes, accidentally. i megadosed 50,000 IU per day for 8 days expecting my level to go from 103 to 150 nmol/L, consistent with previous dose-response. instead, on follow-up testing i went to 271 nmol/L.

what was different? i had identified and corrected a zinc deficiency in the meantime. i hypothesize that the liver requires zinc to complete the hydroxylation process which converts ingested cholecalciferol to 25(OH)hydroxycholecalciferol. i can't find a specific study to back that up, but i can find breadcrumb studies:

http://www.medscape.com/viewarticle/529582_6

Impaired hepatic 25-hydroxylation of vitamin D is also seen in patients with alcoholic cirrhosis...
(Mawer EB et al. (1985) Metabolism of vitamin D in patients with primary biliary cirrhosis and alcoholic liver disease. Clin Sci 69: 561-570)

Zinc deficiency commonly occurs in patients with cirrhosis and has been implicated in the pathogenesis of hepatic encephalopathy...
(Gruengreiff K et al. (2000) Zinc deficiency and hepatic encephalopathy. J Trace Elem Exp Med 13: 21-31)

i'm procrastinating right now, so not going to keep digging for the study where supplementation with zinc reverses liver cirrhosis. makes sense since alcohol depletes zinc, and tight junctions are altered in cirrhosis... remember how zinc regulates tight junction permeability? that has been discussed previously in the context of intestinal permeability/leaky gut. anyway all those points should already have study links posted somewhere here at TIMS.

the take away point is, test your levels and you'll be good. and be nice to your liver :)
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Re: It's not the D3 that we take

Postby Johnson » Sun Apr 10, 2011 3:53 pm

dk wrote:Read Cheer's reply on tootzi's thread
http://www.thisisms.com/ftopict-16158.html

She explains it was a different type of vitamin D given to the mice for this study than what we take and she has a link to a very recent article about the importance of D to the health of veins. Ashton Embry has done tons of research on vitamin D and I trust his advice as well. I will continue to take it. (Sorry Johnson ! ) :)

No need to be sorry dk, I am not invested in the idea so much that it is personal. I reached my own conclusion after years of self-observation, and research. I can admit that I might have been wrong, that I might be wrong.

I have great respect for Ashton Embrie, and it was his writing on Vit. D some years ago that "confirmed" my own observations. I am well aware that we often see what we want to see, and find what we are seeking. For instance - I have facetiously claimed that smoking tobacco is actually "good" for me because it stimulated the immune system (and I have always believed that a depressed immune system is a large factor in "MS"). Imagine my glee when my ABx-prescribing doctor told me that he was not going to encourage me to quit right now, as there is an immune-modulating "benefit" from tobacco use. He did say that I ought to quit at some point, so he isn't encouraging tobacco use.

My point is that research and knowledge are constantly expanding and evolving, and what we believed last year, may be proved fallacious next year. I am concerned that people are often influenced by popular media and popular science, and don't think critically about what they have discovered thereby. There are some cracks appearing in the Vit. D angle (for instance; a lot of people from sunnier climes are now known to have "MS", and for years we thought it was confined to northern climes, and Caucasians). I have concern that some have embraced the popular science, and failed to look further, and empirically.

Jimmylegs has provided us with much information on zinc, magnesium and vit. D, and Bethr wrote about hemachromatosis and Vit. D. We are all individual, with individual expressions of "MS". Perhaps one person will benefit from Vit. D supplementation in conjunction with zinc, or such, and others will become toxified.

Bethr - I really must get checked for hemachromatosis, as I have a permanent tan/bronzing to my skin, and I am fair with blue eyes and red hair (Irish descent). I used to be pale in winter, and sunburnt in summer, but my permanent "tan" just keeps getting better. This might explain some of the benefit that I have perceived from quitting Vit. D supplementation...
My name is not really Johnson. MSed up since 1993
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Postby soapdiva884 » Sun Apr 10, 2011 5:01 pm

Just wanted to pop in and say Hi to Dr. Sclafani!!! Hi!!!!
Boyfriend dx'd 6-6-06!!! RRMS............CCSVI procedure done on Nov. 13, 2010 and March 7, 2011 by Dr. Sclafani!
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Postby Cece » Sun Apr 10, 2011 7:26 pm

Cute picture, soapdiva!!
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Postby Nola » Sun Apr 10, 2011 7:50 pm

Hi Dr. Sclafani. Thank you so much for offering yourself in this way.
Last edited by Nola on Thu Jun 16, 2011 2:28 pm, edited 1 time in total.
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Postby drsclafani » Sun Apr 10, 2011 7:54 pm

newlywed4ever wrote:
My GP said she called you but didn't leave a message because you don't identify yourself on voice mail :roll: So, instead, she called a vascular surgeon, a neuroradiologist, & a neurologist - all 3 had never heard of CCSVI :( ...which then led to ??s like


was my procedure done in a real medical facility,

Satriale's pork store: ask for Tony

what are your credentials

half italian, half sicilian

was there oxygen in the operating room, etc

nah, but we use the air tank from the auto body shop and spare parts store next door if we need some

THEN she took my blood pressure which was 132/88 - my usual is 100/60. On the outside, I displayed cool-headedness dignity - on the inside, I was boiling!!


dont for get the uppers we sold you on the way out the door
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Postby drsclafani » Sun Apr 10, 2011 7:57 pm

NZer1 wrote:Hi Dr.S,

I have just been catching up on the posts over the last 10 or so pages and notice that the vein wall damage is a problem that is being well thought through and the use of IVUS for people with the skill to read it will be priceless.
Is it possible that the vein (wall) size where it looks 'stretched' above a valve problem could be or end up like vasculitis, or become an area of 'diseased wall' that could have an effect on the BBB because of the weakened wall?


the large vessel dilatation i am speaking about is right above the valves. this is not venulo-capillary area where blood brain barrier leak is suspected.

i imagine that this distension is long standing.
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Postby drsclafani » Sun Apr 10, 2011 7:58 pm

NZer1 wrote:Thought no 2.
If the vein walls have stretched/weakened in the jugulars and azygos then what is happening in the vein walls within the brain. Is it likely that the BBB leakage is happening within the brain because of the stricture within the vein/brain?
No room to expand within the skull structure other than fluid space in the CSF possibly weakening the vein walls because of back jets, reflux, hydrocephalus?


that is the theory. not sure that disruption of bbb is a result of hydrocephalus though
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Postby drsclafani » Sun Apr 10, 2011 8:00 pm

NZer1 wrote:Thought no 3,
The talk about hydrocephalus is very compelling and something I believe has been mentioned by another Dr. on TiMS' some time ago.
If the blood cannot 'leave' the skull naturally, there will be signs of pressure build ups in the skull itself?
It seems that the backup of blood is occurring prior to the jugulars?
The mixed results from treatments could be an indication of a problem that is within the skull *and also external of the skull (two parts to the same problem)?


this is a very difficult and challenging knowledge base for me. So much so, that I am going to invite the isnvd speaker on the topic to the new york symposium in july
hemodynamic/hydrodynamic issues are critical throughout the ccsvi theory
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Postby drsclafani » Sun Apr 10, 2011 8:02 pm

NZer1 wrote:Thought no 4,
The diet change for most but not all have shown benefit, could it be when there is disease of the vein wall progressing to restrict the blood flow as well as valve issues and internal brain wall issues restricting flow and weakening of the BBB. Diet change sort of gives reason to the improvement of diseased or injured vein walls?
The vitamin D level improvements by supplementing could also be reason for improved vein wall barrier quality when the wall has been stretched.
Trauma is another good way to stretch veins in MS patients, whip lash and in my case sport and work injuries to the neck, all the conditions for damage and forming strictures through a healing process, like the scars forming from large ballooning.
Multi faceted causes to the same outcome, progressive de-generative disease.
Thoughts?


the predominant obstruction is fusion of the valve leaflets, i suspect either caused by inflammation, infection or congenital issues. Dietary influence is beyond my knowledge. Can't comment
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Postby drsclafani » Sun Apr 10, 2011 8:04 pm

NZer1 wrote:Thought no 5,
What do you think of Dr Zamboni's collar?
Is it going to be useful other than as a dx tool to use on naysayers?


i can think of a few interesting uses. as a screening tool. as an intraprocedural monitor of effect of treatment

lets not kill off all the naysayers. we need them to keep everyone honest. we just dont want them to be bullies but cooperative, intelligent challengers.
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Postby drsclafani » Sun Apr 10, 2011 8:11 pm

NZer1 wrote:Last question, for now :D
We have recently been made aware that we have a Phlebologist, Vascular Surgeon, Dunedin, New Zealand
André M van Rij is Professor of Surgery at the Dunedin School of Medicine University of Otago where he directs the Vascular Research Unit. His research has focused on venous disease and the biology of varicose vein recurrence and venous thrombosis. His translational research bridges new basic research into the venous clinic. Professor van Rij is a vascular surgeon and President of the NZ Association of General Surgeons. Professor van Rij is the Deputy Chancellor of the Australasian College of Phlebology.
The Professor has just attended the Melbourne Australia conference where Paulo was speaking!

*****Have you heard of Prof. van Rij?


Regards Nigel.


i never came in contact with him in my career.

a quick review of his publications was impressive enough....diet, venous insufficiency, restenosis, endothelin to name a few topics.

go get him
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Postby drsclafani » Sun Apr 10, 2011 8:15 pm

10yearsandstillkicken wrote:Hi Dr. Sclafani,
I had a Doppler ultrasound about a year ago that showed my right IJV was narrowed. The report:
Jugular Vein Supine Position:
Proximal. Right Diameter (cm) 1.1 Left Diameter (cm) 0.87
Mid. Right Diameter (cm) 0.99 Left Diameter (cm) 0.71
Distal. Right Diameter (cm) 0.96 Left Diameter (cm) 0.76
Upright position:
Proximal. Right Diameter (cm) 0.29 Left Diameter (cm) 0.39
Mid. Right Diameter (cm) 0.32 Left Diameter (cm) 0.24
Distal Right Diameter (cm) 0.30 Left Diameter (cm) 0.23

Right: There is abnormal turbulent flow with high amplitude, bizarre Doppler wave flow pattern throughout the right jugular and vertebral veins. Mid right jugular vein shows narrowing on some of the sagittal images, not seen on transverse. However, there appears to be a prominent layer of muscle fibers along the mid portion of the right jugular vein on all images. Veins collapses on upright position.
Left: Jugular veins shows normal phasic Doppler signal. No reversal of flow. The valves are patent and there is good compression throughout. The vertebral veins is normal. Veins collapses on upright position.

IMPRESSION:
1. Abnormal flow in the right jugular vein suggests some reversal of flow. A prominent layer of muscles along the mid portion of the right jugular veins. The right vertebral veins show abnormal Doppler flow as well. Correlation with MRV may be beneficial.
2. The left jugular and vertebral veins show normal phasic Doppler low.

The technician asked me to take a deep breath while scanning my right jugular. The vein opened some while taking a deep breath while remaining narrowed while breathing normally. In your opinion, would this indicate the layer of muscles is the cause of the narrowing and that ballooning not a solution in my case? I have a couple images https://picasaweb.google.com/105246064577496874688/Question?authkey=Gv1sRgCJiV-6Oazb7CTQ#. Should I get another test, other test to confirm before ballooning?


i have seen this with one well known MSer. I brought it to dr zamboni and we both thought, ultimately, that it was just a prominent muscle bundle, nothing more.

the report you describe is not a ultrasound report of someone being studied for ccsvi. you should get an appropriately performed exam by someone who knows how to do and interpret it.Where do you live?
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Postby drsclafani » Sun Apr 10, 2011 8:19 pm

munchkin wrote:Hi Dr.Sclafani

Is there anything that can be done for those of us who have had our veins narrow due to the actual procedure?
Is a repeat venoplasty a realistic option based on the results of the first procedure?
Thank you for any information,


it is not that easy to determine whether the narrowing of the veins on the second go around is caused by restenosis of the original problem or vein wall injury due to balloon damage or intimal injury from the balloon.

either way, obstruction should be treated, especially if there were any clinical improvements that were short or long lived after the first treatment.

it is the nature of veins to restenose. surveillance and reptreatment is how we usually address venous stenosis.
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Postby drsclafani » Sun Apr 10, 2011 8:21 pm

soapdiva884 wrote:Just wanted to pop in and say Hi to Dr. Sclafani!!! Hi!!!!


which one is john?
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