DrSclafani answers some questions

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

Postby drsclafani » Sun Apr 11, 2010 11:56 pm

is it possible the same sort of metal sequestering is happening at a microscopic level in the cerebral venous vascular walls creating plaques/scars (which I think would render this stray iron harmless, other than the problems caused by the scars )?



i do not think that the brain can do that. that iron in the walls is likely to be hemosiderin, a byproduct in the breakdown of hemoglobin and commonly seen in venous insufficiency
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Postby drsclafani » Mon Apr 12, 2010 12:02 am

Quote:
I am wondering if there is some logic to the idea that maybe the iron deposits found in MS lesions are an endproduct of hypoxic injury which in turn is occurring because of reduced blood flow and it is actually hypoxic injury we have to worry about, not iron per se?


There is a thread here on TIMS about iron and phlebotomy, generating a fear of iron--Stacemeh's posit seems a reasonable answer.
Wonder if you could comment on this.

Thanks for your incredible interaction here...


i like the concept that iron gets into the brain via diapedesis of red blood cells across the venular walls that are damaged by vicarious luxuriant perfusion that occurs with ccsvi. When red cells die, they leave behind hemoglobin that gets degraded into hemosiderin that ultimately also breaks down. ADmittedly there are probably other reasons that iron gets in to the brain too.

hard to remember at 3 in the morning!
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Postby drsclafani » Mon Apr 12, 2010 12:06 am

Leaving the stent discussion aside for now. As regards the traditional method of "angioplasty" isn't the risk-benefit analysis for that a win-win situation for all with MS - whether more severe or less severe progression? We have nothing to loose and potentially a lot to win!


it is always about risk benefit. I think the risk is less than the potential benefit. so even if the chance of success is unproven, i would still take the chance
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Postby drsclafani » Mon Apr 12, 2010 12:10 am

A regards immediate effect, what's your view on statements as those from Sinan in Kuwait? - see below (and Zamboni and testimonials from his patients in interviews have reported similar observations).

"Sinan says all of the patients saw improvements in their MS symptoms, with some noticing "dramatic" results...He says patients with more severe MS reported fewer improvements, but did notice feeling less stiffness and more energy. Those with less severe disease, reported up to 90 per cent improvements in their fatigue and numbness in their hands and leg. "In one case, the patient couldn't see from one eye and started to be able to see," Sinan reported.

Sinan said he's confident the results he saw were not the result of the "placebo effect,"..."If this is a placebo effect and I have MS, I would want this placebo effect," Sinan said."It is amazing the kind of improvements the patients say they have. It cannot all be attributed to placebo. Not being able to see and then being able to see, better bladder control, end of foot drop -- that cannot be placebo."


These dramatic and very early improvements are pretty impressive. My initial thoughts were "either I am possessed or this patient is "
shocking it is sometimes.
How this happens is anyone guess, but i keep thinking that it has to do with improvement in the circulation rather than the devil
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Postby drsclafani » Mon Apr 12, 2010 12:13 am

You make me wish I had pursued medicine. Is 48 too old? I have a half of a B. Arts. Grin


well, it is a question so i am going to answer it. I have seen a couple of people do medicine as a second career and it was pretty hard on them. having to take directions from youngsters, the long hours, etc. Nonetheless they always seemed to complete their assignments and definitely had their heads screwed on correctly.

i remember the 68 year old university chairman of medicine who retired and then went back to med school. I still do not know how he did that
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Postby drsclafani » Mon Apr 12, 2010 12:16 am

Hello Dr. Sclafani
I have the family you speak of. My mother has MS, her sister has MS, Her brother probably has MS (not tested), my brother had MS (passed away 1 year ago (MS related), I have MS. My brother and I have 5 kids aged 13 - 23 that will probably develop MS. My aunt and I are already on your list. Let me know what I can do to help.
Blaine


this is another idea. i can barely keep up. I await some discussions and thinking with the chair of pediatrics and the chief of genetics, nothing imminent just more to do
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Postby drsclafani » Mon Apr 12, 2010 12:19 am

Posted: Mon Apr 12, 2010 1:21 am Post subject:

--------------------------------------------------------------------------------

Dear Dr. Sclafani,

I spend every day half an our in my infrared-sauna. I bought it to relax my muscles, but it's also good for the bloodflow and now I understand why I feel better in general since using the sauna.

I am already diagnosed with CCSVI and april 19th I will have my liberation treatment. I think it's good for me to continu going into the sauna after the treatment, but i want to be sure.

What do you think about it?

Thank you very much!

With kind regards, Leontien


I have not read about this. I cannot think of any obvious reason why you should change your behavior after liberation. Better ask your doctor who is likely going to be as unsure as I
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Postby drsclafani » Mon Apr 12, 2010 12:26 am

I'd prefer to wait until she graduates from college before pursuing CCSVI testing/treatment for her. Do you see problems with waiting four years as long as she doesn't show any new neurological symptoms? Thank you very much.

Also, what do you think of the idea of an umbilical cord wrapped around a new born's neck as being a possible cause of damaged jugular veins?


I do not think that anyone knows. If this is a congenital venous malformation then it is likely present since before birth and therefore long unrelenting damage occurs over time. How much brain loss is needed before the disease becomes manifest.

i think testing early must wait until there are sufficient sonographers we are going to let those with disease be taken care of first.
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Postby drsclafani » Mon Apr 12, 2010 12:27 am

Also, what do you think of the idea of an umbilical cord wrapped around a new born's neck as being a possible cause of damaged jugular veins?


i would bet against that. the narrowings are generally too low in the neck to be affected by umbilical cord

but your guess is as good as mine
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Postby drsclafani » Mon Apr 12, 2010 12:33 am

Something thats also bothered me is that the bnac (buffalo) study hasn't found ccsvi in the same high numbers zamboni and others have.. I thought it would be interesting to study the ms lesions of those found to have ccsvi vs. those who did not.. The term venocentric has been used when describing lesions.. so do we need Tesla 7 mri's to study this?


Dr Haacke says that susceptibility weighted imaging (SWI) can be done even on the lowly 1.5 T magnets

it will be interesting to see if Dr. Zivadinov's second go around with US shows an increased number of MS patients as his and his technologists experience improves
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Postby drsclafani » Mon Apr 12, 2010 12:35 am

My ultrasounds (pre & post), plus venogram and angioplasty were paid for by Medicare at GU. I don't know what procedure codes and dx codes were used. The billing person in vascular told me that she did her homework before submitting. Hope that helps.


i try not to remember numbers especially at 3:45 am.

the diagnosis code is cerebrovascular malformation
the procedure codes are for venograms and angioplasty
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Postby drsclafani » Mon Apr 12, 2010 12:38 am

he origin of Dr. Zamboni’s work in Multiple Sclerosis began when he was a vascular surgeon in Sardinia, Italy. Sardinia is noted for its high level of epidemiology in MS in the general population. During 1987-1992, he noted a high prevalence in children with malformations of the jugular veins. His paper on this topic, “So-Called Primary Venous Aneurysms” was published in 1990. He noted AV fistula and a closed ring stenosis that could not be crossed by their blood in these children, external compression and this vascular anomaly appeared to be congenital. 20 years later, 90% of these children he studied have been diagnosed with MS.


they ought to make a movie about this. there is lots of drama, if too little action
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Postby drsclafani » Mon Apr 12, 2010 12:41 am

Posted: Mon Apr 12, 2010 4:19 pm Post subject:

--------------------------------------------------------------------------------

HappyPoet wrote:


I'd prefer to wait until she graduates from college before pursuing CCSVI testing/treatment for her. Do you see problems with waiting four years as long as she doesn't show any new neurological symptoms? Thank you very much.




I would love to see what Dr. S answers to this. I, in my "non-medically-educated" mind would think that:

If CCSVI slowly leads to development of more and more iron deposits / brain lesions and when our brains had enough we start showing the full-blown MS symptoms... I would think - the earlier we stop the damage, the better?

What do you think Doctor?


definitely earlier than later, but what to do when you find it? Not a simple answer. Also lots of people with the disease need screening so who should get studied first, someone with ms or someone who might come down with ms

and how does one treat an asymptomatic patient

very difficult ethical decisions are coming
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Postby drsclafani » Mon Apr 12, 2010 12:47 am

thankfully, no one has asked any questions so i can leave the hospital at 4am, having returned here this evening to take care of a 50 year old man who sustained a gunshot wound to his jaw that injured his internal carotid artery, his external carotid artery and his facial artery. It was a challenging case, one I would really get excited about all these years.

somehow it has lost its appeal. the patient was intubated, and sedated. when he wakes up he will never know that i have treated him. He will not understand the implications of the treatments i have rendered. There will be no thanks, no bonding. He is a flash in the night

So different is it treating you. alive, alert, curious, appreciative, caring for each other.

Such are the ramblings of "a saint"

good night
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Postby whyRwehere » Mon Apr 12, 2010 12:51 am

I think he may be very thankful, you just won't be there to get it! I had a question, but it is not mine, but Eric's from another thread. He wants to know if you can get stents after having gone through angioplasty. I think yes, of course, but I am not an expert.
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