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Hey thanks Dr S. I will see you Aug 7th for the fund raiser I plan on bringing a couple of your peers with me they are all interested in CCSVI so bring all your knowledge with you.

Is this a fundraiser for CCSVI? Can you give us some info? I'd love to tell family and friends about it.

LauraV wrote:Is this a fundraiser for CCSVI? Can you give us some info? I'd love to tell family and friends about it.

This came originally from the facebook ccsvi page, I believe it is in Detroit:

Cece wrote:Saturday, August 7, 2010

Speakers: E. Mark Haacke, PhD, David Hubbard, MD, Sal Sclafani, MD, and Monte Harvill, MD
...
This is a presentation and fundraising event focused on the chronic cerebrospinal venous insufficiency (CCSVI) approach to treating multiple sclerosis, as recently discovered by Dr. Paolo Zamboni, from Ferrara, Italy.

Phase 1 of the study requires $500,000 – private philanthropy is required to provide the back bone of the necessary funding. We could wait for governments to respond, we could wait for others to provide the funding, we could wait for other countries to proceed – or we can donate today and start trials in the United States immediately.

The MRI Institute for Biomedical Research is at the forefront of this new research and has a team ready and waiting to start work in collaboration with imaging sites in the US. However, they do not have the funding. We need to get the research started NOW which is why we are asking you to attend this information seminar where you will meet and talk with doctors and scientists who will focus on this new approach and who will be carrying out the research.

Space is limited and advanced registration is required. Ticket price is $100 per person or can also make a donation in any amount, of which 100% will go directly to this research project and will be treated as a charitable donation for tax purposes.

This is a grass roots attempt to fund the crucial early stages of study.

Please pass this along to anyone within your network who is interested and can help. If you cannot attend please consider making a donation at http://mrimaging.com/donate.html

Sincerely,
Rachel D. Martis-Laze

Some more info:
Saturday, August 7, 2010
3pm - 6pm
Warren, Michigan
Donations are tax deductible.
Register here: http://mrimaging.com/category.102.html

Cece wrote:

LauraV wrote:Is this a fundraiser for CCSVI? Can you give us some info? I'd love to tell family and friends about it.

This came originally from the facebook ccsvi page, I believe it is in Detroit:

Cece wrote:Saturday, August 7, 2010

Speakers: E. Mark Haacke, PhD, David Hubbard, MD, Sal Sclafani, MD, and Monte Harvill, MD
...
This is a presentation and fundraising event focused on the chronic cerebrospinal venous insufficiency (CCSVI) .....

Please pass this along to anyone within your network who is interested and can help. If you cannot attend please consider making a donation at http://mrimaging.com/donate.html

Sincerely,
Rachel D. Martis-Laze

Some more info:
Saturday, August 7, 2010
3pm - 6pm
Warren, Michigan
Donations are tax deductible.
Register here: http://mrimaging.com/category.102.html

Thanks, CeCe! I'll pass this on to family and friends. When school starts up again I'll be able to drum up more $$$. My school does these regular dress-down day fundraisers. They made the mistake of selecting the MS Society once (for my sake), but after I spoke to the teacher who runs it, it's off the list. This year, the CCSVI study will be on the list.

MSwarrior wrote:Dear Dr. Sclafani,
I know you are not a neurologist, but I still have question. My wife was Liberated in Poland at the of June. Since than part of her symptoms got better. But now she is feeling dizzy in the morning and before noon. Is it normal, considering that we have very hot weather here right now, or may have happened that her LIJV restenosed?
Your answer will be highly appreciated.
MSwarrior

i think that every patient who has undergone liberation should have a three month followup ultrasoud exam with doppler ala zamboni
your doctor might recommend it sooner and i would follow your doctors advice

i would worry about relapse and restenosis

we know that after care is important and thant many patients require surveillance and retreatment. keep up the monitioring

Good Morning Dr. Sclafani,
I would like to ask you a question regarding reflux post procedure. I had stenosis in both of my jugular veins. The veins were opened using stents as balloon did not hold. During my 1 month follow-up appointment one of the veins still showed a minimal reflux, not as bad as before the procedure, but it is still there.
My question is, in your experience with CCSVI have you seen the reflux not stopping immediately but going away gradually?

Thank you for your time.

There we go; for what it means; have my MRx's in the mail to you

Your Left jugular vein is compressed by the cervical spine at level of C 1. The lumen of Lt jugular vein is very small at the level of C1, >90% stenosis by MRV study. The jugular venous valves are functioning normal. Because there is no any stent designed for the vein, therefore Dr. XXX, who is responsible for the intervention treatment, will find a suitable stent available on the market, though designed for the artery, for the special location of the vein. The detailed study of azygos vein needs conventional venogram, and MRV of azygos vein only can provide limited information.

Please comment when/if you can

cah wrote:Dear Dr. Sclafani,

there's a another site in germany where CCSVI diagnosis and treatment is offered, in Offenbach (very near to Frankfurt, almost like a suburb). They recently put up a website: www.ccsvi-center.de (also www.ccsvi-center.com , but the english version isn't finished yet, almost empty. And ccsvi-frankfurt.de, which is a bit confusing as they aren't exactly located in Frankfurt, but Dr. Vogl is). They say that they "have established a network of partners" for diagnosis and therapy with these physicians ( http://www.ccsvi-center.de/Diagnostik.htm ):

Prof. Dr. med. Horst Sievert, CardioVasculäres Centrum Frankfurt (CVC) Deutschland

Ducksoo Kim, MD, Professor of Radiology, Boston University Medical Center, Boston USA

Dr. Salvatore J.A. Scalfani, MD, Professor of Radiology, SUNY Downstate Medical Center, New York, USA

David A. Koff, MD, Professor of Radiology, McMaster University, Hamilton, Ontario, Canada

Adnan H. Siddiqui, MD, PhD, Assist. Professor of Neurosurgery, University of Buffalo, New York, USA

On this site they also say that they have improved the Haacke protocol like this (hope I'm translating this right):

1. Combination of fast MRV in breath-holding technique (vasalva maneuvre?) followed by slow MRV in breath-holding technique for the lower neck and upper chest
2. Flow visualization along the IJV
3. Flow visualization of the azygous vein on the passing to the superior vena cava
4. Improved MRV of the chest and torso veins in equilibrium phase with repeated breath-holding technique

My questions are:

- How does this partnership with you and the other physicians look like?

these doctors are friends and colleagues. We do not have a formal relationship. I am just consulting with colleagues. There is no financial arrangement. They have asked my advice, to share my procedure protocols, etc. I do not have at this time an arrangement to perform procedures.

- Would you recommend going there? (If someone has made the general decision for CCSVI diagnosis and treatment, that is)

i do not know who is doing the procedures there. Ducksoo Kim is a senior interventional radiologist who has worked in the boston area for many years. He is a very seasoned proceduralist and it is my understanding that he may be participating in procedures at some point. I have had such discussions as well, but nothing substantive has occured. We have mused about me doing such things but no definite or imminent actions are ancticipated.
So without more information I cannot give you a recommendation at this point.

- What do you think about the improvements to the Haacke protocol? Does this make sense to you?

To be honest, i think that the role of MRVenography is still unclear. Some very bright people, including Haacke, are working on it, but there has been no comparison of MRV to the Gold Standard screening test of Doppler.

In terms of the improvements, i havent had any exposure to this innovations yet.

I'm partly asking this because two of the members of the german ccsvi forum went there and weren't very satisfied (seems that they made the right "pictures" but then draw the wrong conclusions of it).

Again a big thank you

Cah

Oh and, what the heck is the equilibrium phase? ;)

i think that conclusions based upon MRI are difficult. As I have said many many times, the gold standard is catheter venography.

JOhnnybaby248 wrote:

Sotiris wrote:

JOhnnybaby248 wrote:what is venous thrombosis ?

Clotted blood in a vein.

what I dont understand is what veins both right ?

Reflux may be present even in the absence of a stenosis, e.g. due to malformed valves, septa etc.

What is the cross sectional area ?

Assuming the vein is a cylindrical tube CSA is π*r*r

Some people post that there veins are 70% 80% 90% closed how do you come up with that number

(Normal CSA, i.e above or below the stenosis – CSA where the narrowing is )/ Normal CSA

this would mean what dr. resulting in a negative delta (positive result). B mode abnormality noted ?

An IJV narrowing may cause reflux or a disturbance in the blood flow. B mode abnormality is suggestive of a problem in the vertebral plexus or in the azygos vein, i.e. the main drainage canal in the sitting position.

So your saying there might also be a problem in my Azygos vein and I should have it checked as well

No, you should go to an interventionalist who does the entire liberation procedure, not someone who skips a vital component of the treatment

Dr. Sclafani,

I realize you may be inundated with email and personal messages, and of course this thread...I was wondering if you had a chance to read my PM to you yet?

I would appreciate any assistance you are able to provide.

Thank you so very much.

Hello Dr. Sclafani,

I apologize for this question as I don't want to put you on the spot and I acknowledge any response you give is completely "off the record" and not medical advice. So can we take this as a hypothetical question.

Imagine a 58 year old woman with a mitral valve prolapse. She's got the kind of thin, delicate veins that require an IV specialist any time she's needed one & they sometimes have a hard time even just getting blood from her arm. Does this mean her chest & neck veins are also thin and delicate?

She's got high BP (controlled w/Norvasc) but although her heart rate is a normal 80 (mitral prolapse maybe keeps the rate a little fast), lately have had tachycardia up to 124. Her PCP found her thyroid meds (Armour) needed to be upped and her thyroid is low again, she thinks this could increase heartrate even though the woman is "hypo".

My question is, and she doesn't want to see a cardiologist after watching her husband & BIL go to one & they immediately want to do treadmills with contrast & then go into the heart arteries. She's also hospital phobic!

But she has MS and would like to explore CCSVI testing and possible ballooning or even stenting if recommended.

My question is, does her medical history above make her any *more* susceptible to stroke, DVT, or to veins tearing than the average person?

She understands there's a risk with any procedure, and willing to risk - but stroke is one thing that is scarier than her MS getting worse. She's about a 5 on the disability scale - maybe a 6, so recovering balance, cognitive abilities, feeling in her feet - these are important.

I'm just wondering, am I over-thinking this? Or does this increased risk exist? If so, would the IR who treats her - or doctor - be able to determine this before any procedure?

If this is too delicate to answer, I understand. Sorry. I have no one to ask here a hypothetical question like this. I live in Hawaii - we have no CCSVI experts, and this person would have a very limited HMO to gather medical opinions.

There you have it! Would stroke be greater for a person w/this medical history?

Thank you for listening!

L.

Rusty on the greek alphabet, but I think delta means change or difference, so that would be between lying down and upright. Single measurement (one vein, one position) would be the CSA by itself, yes?

Dr. Sclafani:

Assuming the vein is a cylindrical tube CSA is π*r*r

n being the length and r being a single radius (half a diameter). Same units of length all round, please.

So if by some miracle, you see delta r, it's probably the difference between the radius upright, and the radius lying down. Still the same units, but there's probably a convention for meaning of negative that I don't know. I don't know how to type that nifty delta symbol but it's sometimes written as a little triangle. Oh, and once you have multiplied two lengths, you get square units (area) and the third (n) makes it cubic units (volume).

We're talking circular tubes, and delta r expressed as a ratio between two radii, is analogous to a delta CSA, which could be between sitting up and lying down (which can change), or between not narrowed and narrowed (which usually doesn't).

So n*r*r of that cylindrical section is really volume of a cylindrical vein of length n and radius r. Clear as mud?

Add valsalva and my eyes get a nice reddish glaze.

Good thing Dr. Z. specified narrowing as a ratio as well, between the narrow part and the un-narrow part. In % of the un-narrow vein width.

Good thing I don't have to read it all. I'd get it confused (at least pre-Liberation I would .

LauraV wrote:

Hey thanks Dr S. I will see you Aug 7th for the fund raiser I plan on bringing a couple of your peers with me they are all interested in CCSVI so bring all your knowledge with you.

Is this a fundraiser for CCSVI? Can you give us some info? I'd love to tell family and friends about it.

This is a fundraiser for dr haacke in detroit

1eye wrote:Rusty on the greek alphabet, but I think delta means change or difference, so that would be between lying down and upright. Single measurement (one vein, one position) would be the CSA by itself, yes?

Dr. Sclafani:

Assuming the vein is a cylindrical tube CSA is π*r*r

n being the length and r being a single radius (half a diameter). Same units of length all round, please.

So if by some miracle, you see delta r, it's probably the difference between the radius upright, and the radius lying down. Still the same units, but there's probably a convention for meaning of negative that I don't know. I don't know how to type that nifty delta symbol but it's sometimes written as a little triangle. Oh, and once you have multiplied two lengths, you get square units (area) and the third (n) makes it cubic units (volume).

We're talking circular tubes, and delta r expressed as a ratio between two radii, is analogous to a delta CSA, which could be between sitting up and lying down (which can change), or between not narrowed and narrowed (which usually doesn't).

So n*r*r of that cylindrical section is really volume of a cylindrical vein of length n and radius r. Clear as mud?

Add valsalva and my eyes get a nice reddish glaze.

Good thing Dr. Z. specified narrowing as a ratio as well, between the narrow part and the un-narrow part. In % of the un-narrow vein width.

Good thing I don't have to read it all. I'd get it confused (at least pre-Liberation I would .

so lets clear this up

one views the IJ vein lying down and sitting up. One sees a circle or a oblong that has generally TWO dimensions, top to bottom, right to left. you use the measures of these dimensions to get an area, called the cross sectional area, also known as CSA.

you subtract the csa upright from the csa lying down and you get the delta.

if the delta is a positive number, then the csa lying down is greater than the csa upright THIS NORMAL

if the delta is a negative number, then the csa lying down is smaller than the csa upright. THIS IS ABNORMAL. and one of the Zamboni Five

selkie wrote:Hello Dr. Sclafani,

I apologize for this question as I don't want to put you on the spot and I acknowledge any response you give is completely "off the record" and not medical advice. So can we take this as a hypothetical question.

Imagine a 58 year old woman with a mitral valve prolapse. She's got the kind of thin, delicate veins that require an IV specialist any time she's needed one & they sometimes have a hard time even just getting blood from her arm. Does this mean her chest & neck veins are also thin and delicate?

She's got high BP (controlled w/Norvasc) but although her heart rate is a normal 80 (mitral prolapse maybe keeps the rate a little fast), lately have had tachycardia up to 124. Her PCP found her thyroid meds (Armour) needed to be upped and her thyroid is low again, she thinks this could increase heartrate even though the woman is "hypo".

My question is, and she doesn't want to see a cardiologist after watching her husband & BIL go to one & they immediately want to do treadmills with contrast & then go into the heart arteries. She's also hospital phobic!

But she has MS and would like to explore CCSVI testing and possible ballooning or even stenting if recommended.

My question is, does her medical history above make her any *more* susceptible to stroke, DVT, or to veins tearing than the average person?

She understands there's a risk with any procedure, and willing to risk - but stroke is one thing that is scarier than her MS getting worse. She's about a 5 on the disability scale - maybe a 6, so recovering balance, cognitive abilities, feeling in her feet - these are important.

I'm just wondering, am I over-thinking this? Or does this increased risk exist? If so, would the IR who treats her - or doctor - be able to determine this before any procedure?

If this is too delicate to answer, I understand. Sorry. I have no one to ask here a hypothetical question like this. I live in Hawaii - we have no CCSVI experts, and this person would have a very limited HMO to gather medical opinions.

There you have it! Would stroke be greater for a person w/this medical history?

Thank you for listening!

L.

hypothetically......

difficult veins fr IVs is often seen in heavy set patients, who might have veins that cannot be felt because they are deeper than average, or the veins are rolly, and slide as one attempts t put the needle in the vein.

however unless this hypothetical patient is really really obese, puncture of the vein in the leg is routine. The femoral vein is almost always exactly where you intend t find it. The femoral vein is larger and firm. thus puncture of the vein is rudimentary in most circumstances.

The veins we are trying to place a catheter are large veins. they have substantial thickness of their walls and they are no more or less fragile in patients who are difficult "sticks" .

There no common risk of stroke during liberation unless the patient has a hole in the heart that allows blood clots to travel from the right side of the heart to the left side of the heart.

MSwarrior wrote:Dear Dr. Sclafani,
My wife has been liberated in Tychy, Poland. In her left IJV the stenosis was 7,5 inches long. They tried to liberate the stenosis, but the upper end of it is already in the skull area abve the left ear. Is there any way to fix this type of stenosis at the present time?
Best regards
MSwarrior

This is s difficult question to answer without seeing the pictures.