DrSclafani answers some questions

Johnson · Post by **Johnson** » Mon Sep 27, 2010 9:09 pm

Lena wrote:Dear Dr. Sclafani,

My 15 year old daughter has not been officially diagnosed with MS (about a year ago she was diagnosed with brain lesions after paralysis of her right leg from the knee down which lasted about two weeks). Her only symptoms at this time are fatigue and somewhat foggy thinking. She was also born with one kidney (accidental discovery during a late ultrasound). Fortunately she hasn't had any issues with the kidney, but I'm really worried about repeated exposure to the contrast agent during an MRV and later on during the actual procedure. My question is, do you know of any physicians diagnosing CCSVI solely based on a doppler ultrasound or IVUS?

Thank you so much!

Pardon me for butting in;

It took over 12 years for me to be "officially diagnosed"...

The team in Katowice, Poland does the MRV without contrast, so it is not critical. Contrast is needed in the procedure. They pump you so full of saline though, that the dye would be very diluted, and flush quickly from the system. They test for kidney function before the procedure too.

Having been through it, I can see that Doppler US in the proper hands is sufficient to determine flow problems in the lower jugulars. MRV just costs big money.

spiff1970 · Post by **spiff1970** » Mon Sep 27, 2010 11:48 pm

spiff1970 wrote:Dear Dr. Sclafani,

If we assume that the CCSVI theory is right then how can the following have an impact on bloodflow/MS lesions forming issues:

a) Posture and position: is it better/worse to be in the supine or lying down position? Can having a bad posture have an impact?

b) Physical exercise: does physical effort impact on impaired blood flow when we have CCSVI?

c) Diet: are some nutrients worse/better for CCSVI?

d) Climate: does cold/heat affect the impact of CCSVI?

Many thanks for your attention.

Spiff

Dear Dr. Sclafani,

Can you reply to my queries whenever possible?

Best,

Spiff

L · Post by L » Tue Sep 28, 2010 6:31 am

drsclafani wrote:i do not believe that this was recorded for public consumption.

What a shame, I was really looking forwards to it!

dunkempt · Post by **dunkempt** » Tue Sep 28, 2010 6:56 am

Having been through it, I can see that Doppler US in the proper hands is sufficient to determine flow problems in the lower jugulars. MRV just costs big money.

I don't know if I'd go that far; I was diagnosed by Dr. Simka in Katowice too - but in my case the results from Doppler alone were ambiguous. He needed to see the MRV to be sure it was worth going in (it was!).

-d

Donnchadh · Post by **Donnchadh** » Tue Sep 28, 2010 7:09 am

The evolving practice seems to be to have an ultrasound first, then a MRV.
The main reason clearly is cost-a MRV is mucho more expensive.

Still it's quite possible that either test or both can miss some aspect of CCSVI. But in the USA, it might be necessary to "prepare the ground" for an insurance company to pop for the "gold standard" venogram, which is the most expensive and invasive test.

Donnchadh

fogdweller · Post by **fogdweller** » Tue Sep 28, 2010 8:40 am

drsclafani wrote: I made four major points
...
3. I argued that demands for a randomized trial were very premature if needed at all. i showed them the diagnostic challenges, the laack of clarity about the type, size, duration of balloon angioplasty, the unclear role of doppler, MRV, venography etc made it very unclear what represented best practice. without that knowledge we cannot compare liberation to durgs or to sham, etc. I gave countless examples of the confusing issues and numerous examples of bizarre veins

s

Dr. S. several months ago you were suggesting that anyone getting treatment, if at all possible, should do so only in a study. Have you changed tht view?

I thnk I agree with you. Several of us in this forum have tried to figure out how to structure a study to obtain meaningful data, and with the variety of the conditions and the difficulty and variability of the condition, and the fact tht this is a surgical, mechanical intervention not a drug, that has been almost impossible, not to mention the difficulty in blinding the study. Do you have any suggetions for the structure of a study at this time?

CaptBoo · Post by **CaptBoo** » Tue Sep 28, 2010 9:01 am

Dr. Sclafani,

In my Doppler and my venogram, as far as I know, only my jugulars and azygos were checked. I have read that the jugular is only operational in the supine position, which is about 1/3 of the time for most people. My question is why the veins responsible for cerebral outflow while upright aren't looked at.

Boo

1eye · Post by **1eye** » Tue Sep 28, 2010 9:54 am

fogdweller wrote:
drsclafani wrote: I made four major points
...
3. I argued that demands for a randomized trial were very premature if needed at all. i showed them the diagnostic challenges, the laack of clarity about the type, size, duration of balloon angioplasty, the unclear role of doppler, MRV, venography etc made it very unclear what represented best practice. without that knowledge we cannot compare liberation to durgs or to sham, etc. I gave countless examples of the confusing issues and numerous examples of bizarre veins

Dr. S. several months ago you were suggesting that anyone getting treatment, if at all possible, should do so only in a study. Have you changed tht view?

I think he was referring to randomization. I think those that want to go into randomized trials are definitely welcome to it. There are studies going on now, that will probably result in final bed-time for this dispute, and the issue of whether Liberation is placebo.

Cece · Post by **Cece** » Tue Sep 28, 2010 10:10 am

Donnchadh wrote:Still it's quite possible that either test or both can miss some aspect of CCSVI.

If Dr. Sclafani still stands by this statement, then maybe it's unnecessary:

drsclafani on April 27th wrote:my only comment is......

when do we abandon ultrasound and MRV?

the incidence of abnormality in MS is so high, that it has become irrelevant to have a noninvasive tesst to screen. unnecessary cost and inappropriate to deny the gold standard to anyone.

I fear it is just a method to delay treatment.

only reason to do noninvasives is to get enough experience to use it for followup screening

It seems that if you have MS, you cannot rule out CCSVI before you've had a full catheter venogram. Since there's no consensus on what imaging is necessary, it's doctor's choice.

Lena, I pm'd you some names but not sure you know how to check pm's (it's private messages in the column on the left of the screen).

CaptBoo, have you read through what Dr. Sclafani has said about the vertebral veins?

About the studies, wouldn't randomized trials be the ones to avoid as patients at this time, but pilot studies, safety studies, and registries are all places where our data would be collected and serve the better good.

Also I think MS causes CCSVI just as my coughing causes my cold. Or is that the other way around!

NZer1 · Post by **NZer1** » Tue Sep 28, 2010 11:26 am

Cece could you find this for me please(CaptBoo, have you read through what Dr. Sclafani has said about the vertebral veins? ), I'm next to useless at finding the comments and interested in this now that the Dr. Flanagan accessory veins comment has sunk in. I didn't realize the importance at first for some reason, now that the results from doing the Jugulars have been coming out the importance of the accessory veins is looking to be more important than first thought and even harder to measure and fix.
Nigel

Cece · Post by **Cece** » Tue Sep 28, 2010 12:14 pm

Try this thread, Nigel, it's full of everything I could find by drsclafani on verts:
http://www.thisisms.com/ftopict-13709-vertebral.html

CaptBoo · Post by **CaptBoo** » Tue Sep 28, 2010 12:45 pm

NZ, I've now read the threads that Cece found (Thanks Cece, I don't know how you do it). My thought here is that the stenosed jugs are only critical when supine. The other 16 hours of the day, if the verts are working well, all iron and deoxygenated blood would leave the brain at that time, leaving only the fresh, good blood. I'm thinking of it as getting liberated every morning when I get up. But that's not what happens to me.

The only conclusion I can come up with is that there is also an outflow problem when I'm upright as well. Since it wasn't mentioned in my doppler report, I'm wondering if they looked at the verts at all. Of course after reading the Cece found threads, there may be nothing I can do about it.

Cece · Post by **Cece** » Tue Sep 28, 2010 1:08 pm

CaptBoo wrote:Since it wasn't mentioned in my doppler report, I'm wondering if they looked at the verts at all. Of course after reading the Cece found threads, there may be nothing I can do about it.

CaptBoo, was a b-mode abnormality found on the doppler report?

I've read the same threads and I'm optimistic that something can be done! It just takes a smaller balloon and a doctor who agrees that these smaller veins need treating.

CaptBoo · Post by **CaptBoo** » Tue Sep 28, 2010 2:44 pm

Yes, B-mode abnormality in both jugs supine.

Cece · Post by **Cece** » Tue Sep 28, 2010 6:22 pm

CaptBoo wrote:Yes, B-mode abnormality in both jugs supine.

B-mode abnormality is when the CSA of the jugs are bigger when you stand compared to lying down (the opposite of what they should be). It has to be an indicator of ccsvi drainage issues somewhere other than the jugs since they're the veins compensating, but I think this can mean either the verts or the azygous. So not as conclusive as I was first thinking it might be.

http://www.thisisms.com/ftopicp-124434.html#124434

Here's a link to a quote from drsclafani which indicates that if a clinic is following Zamboni's diagnostic criteria, it would include this step:

drsclafani wrote:2. Longitudinal doppler imaging of the vertebral veins during inspiration in supine and sitting positions looking for reflux by color and waveform