DrSclafani answers some questions

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

Pulse Steriods

Postby Irene » Tue Aug 24, 2010 7:08 pm

Thank you for your replies on the steroids before the procedure question. I have noticed on one of the preliminary applications for one location that does the procedure, that they will not allow anyone to have angioplasty within thirty days of steroids use. I have asked the Dr. in Mexico and he said no problem. I was hoping to get a second option or to see why the other location has this stipulation.
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Re: Pulse Steriods

Postby NHE » Wed Aug 25, 2010 2:07 am

Irene wrote:Thank you for your replies on the steroids before the procedure question. I have noticed on one of the preliminary applications for one location that does the procedure, that they will not allow anyone to have angioplasty within thirty days of steroids use. I have asked the Dr. in Mexico and he said no problem. I was hoping to get a second option or to see why the other location has this stipulation.


It could be due to the risk of infection. Corticosteroids cause the white blood cells to die off.

NHE
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Hi Dr. S and friends, a question if I may.

Postby NZer1 » Wed Aug 25, 2010 5:02 pm

A friend has asked me to ask;
"Why do sonographers look at the internal jugulars only? And why do the IRs look at the internal jugulars and azygos veins only? There are so many veins that drain blood from the cranium and the CSF around the spinal cord. Why do they restrict themselves? "

We are struggling here with our District Health Boards (DHB's) because they think they can read the Zamboni protocols and they will know it all. To get a test you have to go through a Neuro referral. :evil:
Once through that hoop the people testing have not the training or experience to perform tests and then there is the diagnosis issues.
The IR's have indicated through admin that they know what to do as they have performed arterial work so often. :roll:
Do you know of anyone in New Zealand that could help us? And what would be the options that you could advise. Loaded question, bet you are rollings your eye at me Doc!
We have the option of traveling to Australia, which has all the usual pitfalls. Is there any way we can up skill someone, like details where they can be trained, might be able to generate some interest somehow in the system :?
Thanks as always Dr. Nigel. :D
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Postby 1eye » Wed Aug 25, 2010 7:46 pm

Heard there was a grow-op frequented by 10 black bears who were fed dog food.

I think these congenital malformations are enough of a challenge for any doctor, without worrying about which one causes what in 'MS'. Probably arterial surgeons have seen lots of collateral growth as that is there in arteries too. But it can be very very tricky, and you might need a very good doctor. Congenital malformations are what makes every case different. Hope Liberation does me good.

Have a good time, wherever you are, Dr. Sclafani.
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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Postby savannahstarr » Thu Aug 26, 2010 6:56 am

This posting was a mistake made by a family member usuing my account.
apologies.
Last edited by savannahstarr on Mon Aug 30, 2010 4:47 am, edited 1 time in total.
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Postby Kathryn333 » Thu Aug 26, 2010 10:45 am

Hi, Dr. Sclafani. My last MRI report in 2005 read "extensive bihemispheric periventricular and deep white matter lesions", along with some other findings. When I recently googled it, the first words in the abstract were "Abnormal cerebral venous drainage". To me, this was a confirmation that I had CCSVI. However, I have recently had the opportunity to speak to my husband's vascular surgeon. I asked him his thoughts about the new theory and procedure for MS, he said he knew nothing about it and only reads what pertains to what he does. He looked at my MRI report and said I was wrong. and that wasn't what the report said. Could you explain the meaning of that part of the report to me?

The doctor actually googled CCSVI when I was there, found a report dated April 2010 and said there was no evidence the treatment was effective and much more research and studies were needed.

I'm also wondering if the plaques are old, am I less likely to respond to a CCSVI procedure?

Thank you, Dr. Sclafani, for all that you do for us.
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Postby Cece » Thu Aug 26, 2010 10:03 pm

Dr. Sclafani, what role might the SIR society play in this? Today they released a pro-CCSVI statement, plus there is a rumor that a SIR CCSVI study group will be meeting in a few months to plan research studies.
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Link to SIR statement

Postby Rogerp117 » Fri Aug 27, 2010 4:39 am

Thanks CeCe

Here is a link to the statement.

<shortened url>
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SIR's position statement!

Postby cmozena » Fri Aug 27, 2010 10:45 am

I personally think that the position that the Society of Interventional Radiologist has taken is HUGE. They, of course, have the usual caveats that this isn't yet scientifically proven but their closing statement is a 'call to action'

"SIR believes that the completion of high-quality studies on CCSVI and interventional MS therapies should be considered an urgent research priority by investigators, funding agencies, and MS community advocates. SIR, through its Neurovascular and Venous Service Lines, is moving rapidly to catalyze the development of the needed studies by bringing together expert researchers in imageguided venous interventions, neurology, central nervous system imaging, MS outcomes assessment, and clinical trial methodology."

I emailed this link to a local research university and offered to volunteer to help, in any way I could, to expedite a trial.

Additionally, I emailed it to our local MS Society chapter. All 7 trials tht the MS Society has funded are being conducted Neuro specialist. Neuroradiology, Neurologist, Neuroscientist.

I guess Neuro has owned our disease up until now but I think the tables are turning.

I'd love to here the good doctors thoughts.
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Postby drsclafani » Sun Aug 29, 2010 10:46 pm

marcstck wrote:Dr. S, regarding Zamboni's very specialized sonogram protocols:

Since the abnormalities being found are far from subtle (malformed valves, anomalous membranes, mysterious septums, muscle bundles [good grief!] etc.) and the backflow of blood through the veins also being apparently quite out of the ordinary, shouldn't more generic procedures be able to detect these physical oddities?

Why does it take operators with highly specialized training using only very specific techniques to pick up signs of what amounts to gross venous dysfunction?

The knock against the recent German and Swedish studies that didn't find signs of venous reflux was that they weren't using the precise Zamboni protocols. Doesn't the fact that such precise protocols need to be followed throw up some question marks about the hypothesis?

This kind of reminds me of the MS researchers at Vanderbilt University who repeatedly (up until this day) find signs of chlamydia pneumonia in the serum and CSF of MS patients, when no other researchers or labs can replicate their claims.

Just playing devils advocate here, as you know that I'm a believer (I should be, with a big muscle bundle pinching my jugular closed), but I also believe in healthy skepticism. In a nutshell, shouldn't signs of CCSVI not require the arcane methods invented by Zamboni to detect them?


Marc
i am in between trips. hope you are well, or at least ok

dr zamboni developed a simple test but it requires some training and practice. sounds like a riding a bicycle?
the technique can be standardized but people are used to doing this test for other reasons and have tried to study ccsvi as if it were those other indicaitons for the test. thus they ask the patient to do a valsavla manuever, yet zamboni says this is not to be used.

is the method arcane? or are we just on the steep end of a learning curve.
Remember also that more than some other tests, doppler is an art and highly dependent upon the operator for quality images that can be interpreted.

other tests are m ore precise but just havent undergone standarization yet.

so, i say (for argument's sake), that we need to be patient as standards evolve.

its as simple as riding a bike.
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Postby drsclafani » Sun Aug 29, 2010 10:49 pm

Robnl wrote:Dr S. wrote:
Not to say that stress does not affect ms, it is just that its not probably the reason for ccsvi


Doc,

But if you have ccsvi, can stress worsen the neurological symptoms??
In my case my symptoms worsen if i've been in een lively discussion or intensive meeting.

Can that be the result of higher blood pressure caused by stress and thus causing more reflux??

Regards,

Rob


rob, in honesty, i cannot tie the two together yet. Perhaps with more knowledge and experience we can answer your question
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Postby drsclafani » Sun Aug 29, 2010 10:57 pm

petebou wrote:Good day Dr S,

I hope your are having a wonderful time in the woods.


I’m concerned about total blockage of my azygos with time; if of course my problem lies there. I guess total blockage of a major vein is not a good thing. Is this scenario possible ?

total blockage is not a good thing and it is a possibility..

I really cant specifically advise you without knowing your case in detail and without making a patient doctor relationship.

Someone with recurrent symptoms after improvement should be retested.
In the meantime, at least ask your vascular specialist about anticoagulation or antiplatelet therapy.

Thank you for everything you are doing for us. You are the angel I am trying to find up here. Hopefully they made a few more after you and there is one in my area![/quote]
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Postby drsclafani » Sun Aug 29, 2010 10:59 pm

sbr487 wrote:Dr. S,

There are some thoughts that stenosis sometimes is not an issue and can very well be compensated by collaterals etc. So, do you think the main determining factor could be reflux rather than just stenosis?


the real problem seems to be stenosis resulting in reflux. the more veins involved, the less compensation the collaterals can provide.
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Postby drsclafani » Sun Aug 29, 2010 11:03 pm

1eye wrote:
marcstck wrote:Dr. S, regarding Zamboni's very specialized sonogram protocols:

Since the abnormalities being found are far from subtle (malformed valves, anomalous membranes, mysterious septums, muscle bundles [good grief!] etc.) and the backflow of blood through the veins also being apparently quite out of the ordinary, shouldn't more generic procedures be able to detect these physical oddities?

Why does it take operators with highly specialized training using only very specific techniques to pick up signs of what amounts to gross venous dysfunction?

The knock against the recent German and Swedish studies that didn't find signs of venous reflux was that they weren't using the precise Zamboni protocols. Doesn't the fact that such precise protocols need to be followed throw up some question marks about the hypothesis?

This kind of reminds me of the MS researchers at Vanderbilt University who repeatedly (up until this day) find signs of chlamydia pneumonia in the serum and CSF of MS patients, when no other researchers or labs can replicate their claims.

Just playing devils advocate here, as you know that I'm a believer (I should be, with a big muscle bundle pinching my jugular closed), but I also believe in healthy skepticism. In a nutshell, shouldn't signs of CCSVI not require the arcane methods invented by Zamboni to detect them?


They are quite out of the ordinary (these venous malformations), but they eluded detection for 150 years, so it is no surprise they were not straightforward to find. Doppler ultrasound is a screening tool, and one that may end up with its own specialized set of procedures for CCSVI testing. There is nothing arcane about it, rather it requires experience, since these malformations come in so many flavours.

They were not using the "Zamboni protocols", and limited themselves to screening only. If you decide you do not intend to treat CCSVI with venoplasty, firstly, you will never see the result of your screening 'live' on a fluoroscope screen, and secondly you will indeed find some false negative results, because of the azygous vein, operator error, etc.

That is why catheter venography is considered the gold standard. Until you do that I would not eliminate CCSVI, or May-Thurner's, or Budd-Chiari. Taking a course from Dr. Zamboni does not provide you with anything magical, mystical, or other-worldly. It provides you Dr. Zamboni's experiences with a very complex set of semi-random congenital malformations. There is nothing secret about it.

In fact I think the less uncommon this knowledge is, the easier and less expensive these procedures will be, and the better off everybody involved will be. The only question marks in these results are the conclusions. The denizens of this forum know, for instance, that the valsalva maneuver will invalidate your results. They know this not because of magickal initiation but because they have read public peer-reviewed documents.

Other researchers or labs can in a very straightforward manner replicate Dr. Zamboni's claims. They are doing this every day around the world. Just not in experiments looking to discredit. If you use a different recipe, the cake tastes different (sometimes more like a hotdog).

There have not been any generic procedures developed, partly because of FUD from what I call neigh-sayers. But they are in large part very generic. My local heart hospital does angioplasty almost on a production-line basis. Veins are different, I know, but not that different, and the procedures are done regularly elsewhere in the body.

The only thing specialized and hard to reproduce is the screening DUS. I would take whatever courses were offered, and buy the machine from the Italians, because they have been at this a while. Yes it is probably outside normal equipment and abilities, but big deal. Do we know everything there is to know about the human body, so Zamboni can teach us nothing? I think he and a lot of others, have results that say otherwise.


oneeye
well said, although quite long
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Postby drsclafani » Sun Aug 29, 2010 11:10 pm

adamt wrote:Hi Dr Sclafani,

You kindly looked at my catheter venogram images last month and said i had IJV stenosis, May Thurner, poorly developed lumbar veins and Possible azygos stenosis.
well last week i was liberated in Poland,

I asked the surgeon to enter via the left but she said no, only the right side,
So i got both my IJVs ballooned as they enter the chest, where the collar bone is - you said yourself the IJVs were narrowed as they entered the chest
She said my azygos was normal and blood flowed correctly through it

But now i need to get the May Thurners treated

I will have to join the waiting list to be treated on the NHS,
But i have noticed 1-2 days after the procedure onwards, my left thigh is more tender/stinging more than before IJVs dilation

i can only guess thsis is because as the IJVs are now dilated, more blood is coming down to the illiac veins, and the left one is becoming more blocked?

Would it be wise to get the left illiac ballooned/stented as soon as possible?
or should i wait for longer - as i only had the IJVs liberation 7 days ago

thank you very much Doctor

Adam


dear adam
have you ever had symptoms of MTS?swollen leg, tired leg, clots or thromboses of the calf or thigh?
i am not sure that all narrowings of the iliac vein need to be treated unless you have ccsvi in the lumbar or azygos veinous symptoms
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