DrSclafani answers some questions

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.
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drsclafani
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Re: DrSclafani answers some questions

Post by drsclafani » Sat Mar 24, 2012 11:12 am

THEGREEKFROMTHED wrote:Two words. Greek salads. Lots of them with beats and cukes and the like. Learn from terry wahls and eat a shit load of kale. You will be the iron man. Juice. Go to the middle eastern place and get carrot celeray beat and mix in a few other greens. That six months will cut in half. Olive oil and tons of garlic. You have to get
Back to your roots what your ancestors ate...A good multi vite wont hurt. Shit call dr oz hes around the corner...

surprisingly, the nutritionist said to stay away from many vegetables,including spinach and chard, also stay away from tea, coffee cocoa and antacids which all reduce iron absorption right now. said animal sources of iron were much better absorbed. Recommended low fat as well to improve gastric emptying.

Said i should get some testing in a couple of weeks to see what my status was.
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Post by itsjustme » Sat Mar 24, 2012 12:03 pm

drsclafani wrote:
So disappoiinting not to present all my lectures at SIR. It was to be a crowning moment of my career.
Dr. Sclafani,

I am very, very sorry. I do hope you feel better.

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Re: DrSclafani answers some questions

Post by THEGREEKFROMTHED » Sat Mar 24, 2012 4:33 pm

Shows what the hell i know... Hang in there Morty!

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Re: DrSclafani answers some questions

Post by SaintLouis » Sat Mar 24, 2012 5:44 pm

Feel better soon, Dr. S. Sorry to hear of your vascular malformation!

I battle chronically low ferritin stores, take 600% of my daily iron requirement in pill form just to keep my stores from falling and am followed by a hematologist so I will pass on the advice she gave me early on about iron absorption.

If you're taking iron pills, do not even bother with Ferrous Sulfate, too hard on the stomach after a few days. Go with Ferrous Gluconate. Take it on an empty stomach with Vitamin C pill or C containing food if you can stand it. Soon after eat some kind of meat. Don't eat anything else for at least an hour.

Most importantly, do not take iron pills within 2 hours of eating or drinking any calcium containing foods, tea or coffee. Split up your iron pills or deliberate intake throughout the day because you can only absorb a little at a time so taking a lot at once is a waste of iron.

It makes planning meals of the day a bit of a puzzle but you'll gain iron faster this way.

Wishing you a rapid recovery!

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Re: DrSclafani answers some questions

Post by Cece » Sun Mar 25, 2012 6:38 am

drsclafani wrote:I find drs ferral and cummings have brought their own ideas to ivus. i am pleased to have stimulated them

s
What are the differences you are seeing between their use of ivus and your own?

Does your discovery of a bad valve in a vertebral vein make you more likely to check the vertebral veins in future patients? Or was it only because of the jugular occlusion that you would investigate and treat a vert?
While others seem to have people grading their MSIS, and MSQOL and Functional composites, i am going to have to do it myself. And i am gearing up to do that.
Are you gearing up to do a study? What sort of study?
Your original planned study would have had nearly two years of results by now, had it gone forward.
Are you looking for an academic neurologist in Brooklyn, or would anywhere in NYC do? Not that I have any leads.

Speaking of two years, your two year anniversary at TiMS quietly passed by. I am very glad you are still here with us.

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Re: DrSclafani answers some questions

Post by dlb » Sun Mar 25, 2012 7:52 am

Wishing you the best for a speedy recovery, Dr. S....

SaintLouis is absolutely right! Taking vitamin C, even orange or pineapple juice with the iron will aide in the absorption. That was my advice when my iron stores were very low after donating bone marrow to a family member years ago. I can add that I have had low iron levels before, during pregnancy or just because, but I never felt the complete exhaustion that really depleted iron stores left me feeling!! It took a few months until I felt normal.

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Re: DrSclafani answers some questions

Post by drsclafani » Sun Mar 25, 2012 8:48 am

Cece wrote:
drsclafani wrote:I find drs ferral and cummings have brought their own ideas to ivus. i am pleased to have stimulated them

s
What are the differences you are seeing between their use of ivus and your own?
i was hoping to learn more about that at the workshop. another disappointment over this emergency.

I think i don't know enough to describe their use at this time.
Last edited by drsclafani on Mon Mar 26, 2012 1:39 pm, edited 1 time in total.
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Re: DrSclafani answers some questions

Post by THEGREEKFROMTHED » Mon Mar 26, 2012 11:34 am

Eat iron ore shavings

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Re: DrSclafani answers some questions

Post by Cece » Mon Mar 26, 2012 1:31 pm

Listen to heavy metal

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Re: DrSclafani answers some questions

Post by drsclafani » Mon Mar 26, 2012 3:16 pm

Cece wrote:Listen to heavy metal
you mean like iron maiden. hmmm, sounds enticing
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Re: DrSclafani answers some questions

Post by Donnchadh » Mon Mar 26, 2012 3:52 pm

Drink some good Italian red wine...I don't know how much iron it has available, but it will definitely help ease the pain.

Donnchadh
Kitty says, "Take that, you stenosis!"

Got MS?.....Get Liberated!

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Re: DrSclafani answers some questions

Post by Cece » Mon Mar 26, 2012 4:58 pm

But no naps in the iron maiden, no matter how tired

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Re: DrSclafani answers some questions

Post by drsclafani » Mon Mar 26, 2012 6:00 pm

Cece wrote:I said it wrong, didn't I. Here's Siskin's research on the diagnostic utility of ultrasound in CCSVI:
http://www.sirmeeting.org/index.cfm?do= ... s&abs=2088
Conclusions: Findings on a Zamboni-protocol US are not associated with findings on contrast venography in light of the high false negative rate; 99% of the patients with a negative US had a significant stenosis and/or flow abnormality treated with angioplasty. A prospective study is needed to define the role of US and other modalities in the non-invasive diagnosis of CCSVI.
So the 1% would, 99% of the time, be a false negative.
I remember you had a false positive! Showed CCSVI on doppler but no CCSVI during the procedure. An unusual turn of events.
I dont interpret this data the way you describe it now either.

A false negative rate is the rate at which a negative result is false. Dr Almond tells us that of the 86 patients with negative ultrasound exam only 20 were negative on venography. The remaining 66 patients with a negative ultrasound, had a positive venogram.
So the false negative rate is 66/86 or 77%

Similarly of the ultrasounds that were positive (224) only 155 had a positive venogram. So the false positive exams are 69 ultrasounds. The false positive rate would therefore be 69/224. That would be 31%

So these are false positive and false negative rates of ultrasound on this study.

But this is based upon venography being the Gold standard of comparison. If you use autopsy as the gold standard or venography plus IVUS as the gold standard the results would be very different.

Moreover, the gold standard criteria of venography that were used were
1. flow disturbance
2. greater than 50% stenosis.

the signs of flow disturbance, such as reflux, stasis and collateral visualization, is very subjective and depends upon rate and pressure of contrast injection and subjective observation

It is highly debatable that stenoses less than 50% are not significant . the 50% criteria was declared without much proof for significance in arterial disease where higher pressures would enable flow through lesser stenoses which perhaps is not the case in venous obstructions.

There are fluid dynamicists who would argue for a much lower percentage as signficant.

So the conclusions themselves are subjective and i think that the interpretation of the ultrasounds and the interpretation of the venograms may explain the high false positive and high false negative rates.

Ultrasound is a screening test. the Goals of a screening test are to safely differentiate someone with a disease or disorder from someone who does not. This is economically and medically essential because we do not want to perform even minimally invasive tests on healthy patients and we dont want to miss an opportunity to treat some who has a disease.

We use the concepts of sensitivity and specificity to evaluate these concepts. Sensitivity is the ability to detect maximum numbers of patients with ccsvi. sensitivity is the ability to correctly exclude healthy patients from the diagnosis.

We balance sensitivity and specificity to determine whether a test is a good one by using good judgment about risks, about complications, about consequences of missing the disease. So we accept fairly high false positive rates in breast cancer screening because we want to keep the false negative rate as low as possible. We accept that we will do biopsies of lumps that are not cancer (false positive) because to miss cancer is a potentially lethal consequence.

So lets look at the specificity and sensitivity of ultrasound for ccsvi from this study

sensitivity tells us what percentage of patients who have the disease will be detected.
Sensitivity is the number of true positive / true positive + false negative, in other words what percentage of people with ccsvi will be detected by this test

dr almond said there were 155 true positive ultrasound and 66 false negative ultrasound
so the sensitivity is 155/155+66 or 155/221 or 70% sensitivity.

Specificity tells us what percentage of patients who do not have the disease are truly negative

specificity is the number of true negatives / true negatives+false positives
Dr almond said that 20 patients had a true negative ultrasound and 69 patients who had a false positive ultrasound
so the specificity of ultrasound using two parameters of a positive venogram is
20/20+69 or 20/89 or 22%

Sensitivity of 70% and specificity of 22% leave much to be desired. 30% of patients with positive US results will undergo unnecessary venography and 76% of patients who have a negative ultrasound will not get a venogram that can diagnose and treat their ccsvi

According to the Albany data's sensitivity and specificity results, ultrasound would not a very good screening test. it misses too much disease and adds too much cost by doing venography in too many patients without disease.

is that understandable? The conclusions are debatable but not based upon the data of their paper.

.

DrS
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Re: DrSclafani answers some questions

Post by QueenMum » Mon Mar 26, 2012 8:02 pm

Dr S,
So sorry to read of your illness. Please take good care of yourself
and get well soon. You are in my thoughts & prayers.
Mum

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Re: DrSclafani answers some questions

Post by Cece » Tue Mar 27, 2012 3:36 pm

drsclafani wrote:Sensitivity of 70% and specificity of 22% leave much to be desired. 30% of patients with positive US results will undergo unnecessary venography and 76% of patients who have a negative ultrasound will not get a venogram that can diagnose and treat their ccsvi

According to the Albany data's sensitivity and specificity results, ultrasound would not a very good screening test. it misses too much disease and adds too much cost by doing venography in too many patients without disease.

is that understandable? The conclusions are debatable but not based upon the data of their paper.
I understood this better today than the first time I read through it.
The use of IVUS might lower the false positive rate, with the false positives becoming accurate positives if ivus showed that venography is missing some stenoses that had been picked up by doppler ultrasound pre-imaging, but it's speculation because IVUS wasn't used.
I have to read the abstract again. http://www.sirmeeting.org/index.cfm?do= ... s&abs=2088

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