DrSclafani answers some questions

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

US Ext Upper Venous Report

Postby Chicagoboy23 » Fri Apr 09, 2010 9:04 am

Hello Dr Doctor,

I have been lucky to have an MRV and now an US exam using the Zamboni protocol with the following results.
"There is evidence of 1 abnormal criterion described by Zamboni relating to change in the measured cross sectional surface area of the IJV with area measured both in the supine and sitting position. When the surface area of the supine internal jusgular vein is larger than the surface area of the jugular vein measurment, the value is considered abnormal. This metric is calculated by subtracting the surface area of the supine internal jugular vein from the surface area of the sitting internal jugular vein as described in his publication. When the metric results in a negative number, it is considered abnormal. The sitting internal jugular veins today were quite narrowed measuring only 1.10sq cm on the right and 0.08 sq cm on the left while the supine internal jugular area was 1.42 sq cm on the right and 0.18 sq cm on the left. These calculations resulted in a delta value of +- 1.32 sq cm on the right and +- 0.10 sq cm on the left."

Ok, did you get all that.
I have not been able to have a discussion with the image specialist, but I was hoping for a Dr S take on this report.

By the way you have my MRV report somewhere in your office with the left IJV that is 11mm down to 2mm.

I realize this is part of the puzzle...but is there any conclusion with this info??

Thanks for you response, I will hang up and wait for my answer.

your best friend in Chicago,
Mark
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Postby Johnnymac » Fri Apr 09, 2010 10:08 am

drsclafani wrote:to answer your question, my control has included about 100 carotid arteriograms per year done to evaluate intracranial aneurysms and trauma of the neck. The venous phase of those ARTERIOGRAMS show me the jugular vein. working for 38 years , i guess that is ober 3,000 arteriograms on otherwise normal people without MS, (my general patient population is young healthy african american males). I never see the slow flow, the narrowings, that i see on the VENOGRAMS of caucasian MS patients. That is my control.


Dr Sclafani, this is a pretty powerful statement. How many professionals like yourself do you think there are that could make a similar claim? That could prove significant in the patient struggle to get treated right now if there were multiple seasoned professionals who went on record with similar stances.
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Postby Mutley » Fri Apr 09, 2010 10:40 am

Dear Dr Sclafani,

Would placing a stent in an IJV to counter the extrinsic compression caused by overdeveloped neck muscles be a viable option? I wonder whether the constant movement of the neck in this area might cause any undue stress to the stent, or any damage against the inside vein wall if it were under constant pressure from the muscles?

Do you have any data as to the normal flow rate one might expect in the jugulars of a healthy subject whilst supine? I had mine scanned recently and the flow rate was only 4 cm per second.

I’m absolutely hooked on the insight that you are kind enough to share with us here. Thank you so much; your take on all this and your willingness to engage is such a breath of fresh air.

Thank you so much.
Mutley goes to Poland 1st symptom was Optic Neuritis in 1998, DX RRMS Jan 2001, DX SPMS 2007. Last EDSS by doctor 7.5
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Does a 5 degree head up angle produce identical CCSVI images

Postby AndrewKFletcher » Fri Apr 09, 2010 11:06 am

Dear Dr Sclafani

We know posture alters the shape and flow though veins in the neck. We also know through scans what happens when we are standing, sitting or laying down flat.

What I need to know is what happens to an identified stenosis when a patient is on a five degree head up angle, with the platform tilted so that it slopes down from head to toe.

In a person who has a defined stenosis while laying either flat or sitting or even standing. We need to determine whether this same stenosis changes while resting for five minutes or longer on an inclined head up platform.

Dr Franz Schelling suggests I ask this important question again.

I will also ask Professor Zamboni by way of CC

Thanks

Andrew
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IBT website: http://inclinedbedtherapy.com
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Postby Stacemeh » Fri Apr 09, 2010 11:53 am

I rarely post on these sites but I have been lurking (okay glued) to this site particularly to this thread for a while now and I just have to jump in and say thank you to Dr. Sclafani and actually everyone on here for doing what you do. I don’t just like, I love this open discussion!

I also have a question; after reading though information I found here http://www.thisisms.com/ftopict-7708-hypoperfusion.html, 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? :?

The other thing that I would like to mention is I have noticed a few comments wondering what we can do to help, and it occurs to me there might be something that I can help with. I am an off-site medical transcription contractor, so Dr. Sclafani if you need help with record transcription, please give me a shout I am just a HIPAA compliant FTP server away. :D
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Postby Lyon » Fri Apr 09, 2010 2:33 pm

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Last edited by Lyon on Mon Nov 21, 2011 5:42 pm, edited 1 time in total.
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Postby Cece » Fri Apr 09, 2010 3:02 pm

Lyon wrote:hopefully it's starting to click that my dogged detective work is responsible for some of the best info we're getting.


Lyon, I like you, but I do beg to differ: it's Dr. Sclafani's willingness to be here that is responsible for some of the best info we're getting.
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Postby Lyon » Fri Apr 09, 2010 3:11 pm

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Postby prairiegirl » Fri Apr 09, 2010 3:47 pm

Would it not be a great plan to keep this very important and informative thread for its intended purpose-- that Dr. Sclafani can answer questions?
(that is my question :))
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Postby QueenMum » Fri Apr 09, 2010 4:23 pm

Dr. S,

I have been lurking & learning so much due to your giving of yourself, your time & your knowledge. I am so very grateful to you. Eternal thanks.

You seem to be the kind of doctor that I have searching for and never found.
Open mind, open heart and a willingness to listen to the patient (what a concept!). What a shame all docs aren't like you!!

Anyway, please continue to educate us, bounce ideas off us & listen to us.
THANK YOU, THANK YOU, THANK YOU!!!
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Postby QueenMum » Fri Apr 09, 2010 4:25 pm

Dr. S,

Your thoughts????


http://winnipeg.ctv.ca/servlet/an/local ... nnipegHome

Kuwait to offer controversial MS treatment
Updated: Fri Apr. 09 2010 10:59:30

By Avis Favaro, CTV News
Kuwait has become the first country in the world to offer a controversial treatment to all its patients with multiple sclerosis who have blocked veins in their necks.
CTV News has confirmed that Kuwait's minister of health has given interventional radiologists in the country the go-ahead to use the state-financed medical system to begin treating patients who have blocked veins and abnormal blood flow in their necks.
According to a theory proposed by University of Ferrara's Dr. Paolo Zamboni in Italy, and first broadcast on CTV's W5 last November, many patients with MS have blocked or narrowed veins in their necks and chests. He calls the condition CCSVI, or chronic cerebrospinal venous insufficiency.
He theorizes that the blockage prevents blood from draining properly, sending it back to their brain, a problem that could contribute to the immune response that marks MS.
The theory has generated a lot of interest in Kuwait, which has high rates of MS, particularly among women.
In a telephone interview with CTV, Dr. Tariq Sinan, an interventional radiologist and an associate professor at the Department of Radiology in the Faculty of Medicine at Kuwait University says the health ministry will allow radiologists to begin treating MS patients who have CCSVI, starting next week, as part of an ongoing study.
The Kuwait News Agency KUNA also reported the development, quoting the chairman of the standing committee for co-ordination of medical research at the ministry, Dr. Youssof Al-Nesf, as saying: "The presentation meets the legal, moral and scientific criterions specified by concerned organizations, including the World Health Organization."
The decision is based on research by a team headed by Sinan who studied 12 MS patients in March. All of them had CCSVI and were offered what Zamboni has dubbed the Liberation Treatment. The treatment is a vein version of angioplasty, in which a small balloon is inserted into a blocked vein to force it open.
(No stents were used in the procedures, a practice some doctors around the world have tried and one that Dr. Zamboni does not endorse.)
Sinan says all of the patients saw improvements in their MS symptoms, with some noticing "dramatic" results.
"On one day, on March 3, we did three patients. Two had dramatic improvements on the table and started crying because they couldn't believe what they were feeling," Sinan reported.
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," a phenomenon in which patients fool themselves into feeling better by an otherwise ineffective treatment.
"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."
Last week, Dr. Sinan says a group of neurologists petitioned the country's ministry of health to stop the treatments. Their concerns – shared by other MS specialists around the world -- is that the link between blocked veins and MS has not been proven, and that the treatment could be dangerous. They have called for more studies.
But after review, and submissions from physicians and patients, the decision was to allow the treatments, which will be covered by the state-financed medical system.
The procedure will not be performed to treat MS per se but to treat only "improper blood flow" in the veins.
"So we say this is a vascular problem in the neck. Patients, when you dilate the veins, they feel better. We don't have to talk about MS or the link to MS," said Sinan.
Patients will be warned that the procedure is experimental, and the potential risks of venoplasty will be detailed in consent forms. Patients who agree to treatment will be part of an ongoing study that will be done in cooperation with a Kuwait neurologist.
The team will use ultrasounds and magnetic resonance venograms to scan the neck veins, as well as MRIs to track changes in the brain, including the appearance of MS-related lesions.
Doctors hope to treat 10 Kuwaiti patients a week, beginning next week.
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Postby drsclafani » Fri Apr 09, 2010 4:49 pm


Patients will be warned that the procedure is experimental, and the potential risks of venoplasty will be detailed in consent forms. Patients who agree to treatment will be part of an ongoing study that will be done in cooperation with a Kuwait neurologist.


sounds to me like the kuwaiti IRB was involved in this approval that kept the naysayers from blocking it :D
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Postby drsclafani » Fri Apr 09, 2010 4:52 pm

What I need to know is what happens to an identified stenosis when a patient is on a five degree head up angle, with the platform tilted so that it slopes down from head to toe.

In a person who has a defined stenosis while laying either flat or sitting or even standing. We need to determine whether this same stenosis changes while resting for five minutes or longer on an inclined head up platform.

Dr Franz Schelling suggests I ask this important question again.

I will also ask Professor Zamboni by way of CC


andrew, i remind you that i promised off line to look at that when i do procedures. Unfortunately, my train is delayed
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Postby drsclafani » Fri Apr 09, 2010 4:57 pm

SOME of you guys piss and moan every time I ask a sugar-free question but hopefully it's starting to click that my dogged detective work is responsible for some of the best info we're getting.


lyon
even though it was obvious you were trying to set me up, it was a good question.......its just that the answer was better
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Postby Lyon » Fri Apr 09, 2010 5:40 pm

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