DrSclafani answers some questions

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

Postby MegansMom » Sun Mar 27, 2011 7:06 am

Dear Dr Sclafani,

I read on another thread that they have to prove that CCSVI is connected to the plaque formation to tie it all together. And maybe someday soon this will occur.

But could another way to prove a connection be if post- venoplasty plaques shrink or disappear and remyelination occurs. Seems to me that that would prove the impaired flow influences the course of the disease process.

This would probably happen in the patients with short term disease as opposed to long term but who knows?

Just wondered your thoughts on this?
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My 35 yo daughter is newly dx 8/19/10 (had 12 symptoms)
Dx with Type A CCSVI- 1 IJV & double "candy wrapper" appearance of her Azygos
Venoplasty done Sept 21, 2010
Doing extremely well-
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Postby Liberation » Sun Mar 27, 2011 7:26 am

MegansMom wrote:Dear Dr Sclafani,

I read on another thread that they have to prove that CCSVI is connected to the plaque formation to tie it all together. And maybe someday soon this will occur.

But could another way to prove a connection be if post- venoplasty plaques shrink or disappear and remyelination occurs. Seems to me that that would prove the impaired flow influences the course of the disease process.

This would probably happen in the patients with short term disease as opposed to long term but who knows?

Just wondered your thoughts on this?


That is a good point. Dr Sinan told me that they observed reduction in the laesios 3 months after the operation in all patients.
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Postby drsclafani » Sun Mar 27, 2011 10:02 pm

Cece wrote:
Liberation wrote:I tried to put the images of my veins on the page, but somehow only the addresses of them got there :(

I use photobucket, it has a list of choices by the image, one of them is the img code. Clicking it automatically copies it. Not sure if sendspace is the same.

Thanks for the update on Dr. Sinan's methods. When Dr. Sclafani mentioned the possibility of a genetic difference among Kuwaiti patients, that is not implausible, particularly since Kuwaiti has a historically low rate of MS that has gone dramatically up in the last 10-20 years, as compared to other populations that have a historically high rate of MS.

Of note: we have yet another conference starting! The SIR meeting, in Chicago, technically underway already but the excitement startstomorrow with Dr. Sclafani's CCSVI workshop and then Monday with a full panel of presenters. I don't think our researchers have any mor.


we had a great informal session saturday night, speaking about things like anticoagulation, balloon size and my percussion hammer :lol:

i got a sense that the giant balloons were out of favor. While no one mentioned the thrombosis issue, i think that many had instances of it when using very large. balloons we may never get a comparison on that idea....it was probably overstated
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Postby 1eye » Mon Mar 28, 2011 11:49 am

But could another way to prove a connection be if post- venoplasty plaques shrink or disappear and remyelination occurs. Seems to me that that would prove the impaired flow influences the course of the disease process.


Dr. Zamboni's MRI work is not duplicated yet, as far as I know. Too bad, because we might find they are a good indicator of areas that have improved vs. not, and whether or not more treatment is needed. They might also be indicators of hypo-perfusion or hypoxia, or they might indicate that although veins are better, an immune attack is still happening, or the BBB is still breached. Many possibilities.
"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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Membrane and Valves

Postby Jason » Wed Mar 30, 2011 7:49 pm

Hi Dr Sclafani
Have you ever herd of Membrane working in cojunction with a valve causing a reflux?
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Occasional dull pain in my chest after procedure

Postby NotFound » Thu Mar 31, 2011 3:12 pm

Dear Dr. Sclafani,

After having had the stent placed in my Azygous (at Pacific Interventionalists)
I have been having intermittent (not very frequent either) dull pains where I think my azygous is.

Somewhat below / at the level of the heart?

Pain is not debilitating or anything, however it has me concerned.

I had the procedure done on December 14 2010 (3+ months ago). I have been diligently on blood thinners (Warfarin, after getting my INR stabilized between 2 and 3 by injections).

I was not given nor told to take any blood thinners prior to the procedure (not even aspirin). It took more than 10 days for the INR to get to the "therapeutic" level post procedure.

According to the operating Doctor, even if my azygous were to completely clog up, I would not be any worse off (his words, not mine), because my occlusion (which was due to azygous twisted about itself) was greater than 90%.

Can I please hear your take on this?
What can the pains be due to?


In my understanding to check the status of the stent will involve going in through the veins again and Doppler is no help here.

Thank you in advance.
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Postby griff » Fri Apr 01, 2011 5:57 am

drsclafani wrote: we had a great informal session saturday night, speaking about things like anticoagulation, balloon size and my percussion hammer :lol:

i got a sense that the giant balloons were out of favor. While no one mentioned the thrombosis issue, i think that many had instances of it when using very large. balloons we may never get a comparison on that idea....it was probably overstated

Dr Sclafani, what do you mean by "it was probably overstated"? Do you mean the results of the giant balloons were overstated or the thrombosis issue?
Another issue regarding balloon size: isn't the size of the stretch depends on two things, one is the size of the narrowing/stenoses and the other is the size of the balloon? So, by increasing the balloon size I increase potential damage to the vein walls, but if the stenoses is greater (very narrow vein) I can dilate only with greater damage to the vein walls? So, all in all, I can only mitigate the damage done to the vein wall by using the appropriate size of balloon, but I can not have any impact on the other factor, the original size of the stenoses. Why can we not scale the size of the balloon used based on the Doppler us?
How about scarring and intimal hyperplasia? Are they mostly associated with stents or also with damage caused by balloon? Is the any documented data on these issues?
What did dr Zamboni change in his original techniques? As far as I know he used smaller balloons and he did not tear up annulus at the beggining. Did he change that?
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Postby griff » Fri Apr 01, 2011 6:06 am

Cece wrote:
We have never treated by angioplasty a disease like this. pure valvular obstructions i am not sure we need to continue to think that restenosis is an essential component of this. We just have to figure out how to do this properly.

It would be tremendous if you are right about that! It's been said that angioplasty is not durable anywhere in the body, why should it be durable here, but if you are right that this is an entirely new sort of disease (pure valvular obstructions) than we should not be limited by the success or failure of other types of angioplasty.


Sorry for the silly question, but I am not that familiar with the backgorund of the CCSVI. Do you mean that the stenoses is caused by the valve problems (narrow annulus, leaflets fusions, etc.) so we have to treat only the valve?
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Postby Cece » Fri Apr 01, 2011 8:34 am

Griff, yes, from this post of Dr. Sclafani's:
www.thisisms.com/ftopicp-157988.html#157988
from IVUS i have noted that the vein wall is not narrowed at all. The valve elements INSIDE the vein are malformed and this malformation leads to stenosis because the valves that do not open, they may be stuck to each other, or may be fused to each other. That said, i have been focused on trying to treat the valvular malformations with a balloon that does not dilate the normal vein. So I measure the vein diameter and use balloons that do not exceed that diameter.

Its only been a few weeks so i cannot tell you that this works yet.

For patients with valve malformations, the vein itself may be healthy and thus need caution and preserving when attempting to treat the bad valve....

drsclafani wrote:Since you are young, then the diagnosis would not be atherosclerosis. It looks like fibromuscular dysnplasia. but since you say you have hypermobility syndrome, the findings are consistent with ehlers danlos syndrome of the carotid artery.

it is possible to have microinfarcts of the brain that can give white matter lesions and that might lead one to a diagnosis of MS when EDS should be strongly considered.

Of course, i cannot give you particular advice because i know so little of your case. If you were my patient, I would get a proper CCSVI ultrasound to satisfy yourself that you do not have CCSVI.

if i were you, i would consult with a vascular specialist to clarify whether the diagnosis was actually EDS and then i would review with my diagnosing neurologist the clinical evidence.Since MS is a diagnosis of exclusion, you might not have MS at all.


what falls through the cracks!

Perkele, did you catch this? It seems significant!
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Postby erinc14 » Fri Apr 01, 2011 9:16 am

hi,

i have a question

my jugulars we're stented but not the azygos . why not?

thanks , Erin
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Postby Cece » Fri Apr 01, 2011 1:13 pm

Any thoughts on this case that Dr. Cumming posted? He suggests ballooning the confluence of the sinuses, would that be an area to hand off to a interventional neuroradiologist? Have you heard any success stories from doctors (the only one I know of doing this is Dr. McGuckin of VAC) who are using RFA? I was upset to see that this was a distal stenosis near the skull base. I don't know if we can even know if it was a true stenosis originally. The patient is a TIMS member.

www.thisisms.com/ftopicp-159265.html#159265
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Postby bestadmom » Fri Apr 01, 2011 2:22 pm

Dr. S,

I heard someone's CCSVI was treated this week by cryoplasty vs a stent. It wasn't her first treatment. Was there talk of this method at ISNVD or SIR? What does the "freezing" do to the vein wall?
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Postby Lyon » Fri Apr 01, 2011 3:03 pm

..
Last edited by Lyon on Fri Jun 24, 2011 6:27 pm, edited 1 time in total.
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Postby Cece » Fri Apr 01, 2011 6:33 pm

bestadmom, do you mean the cryoplasty was done within a stent? Or that it was done instead of a stent? If it was done in a stent, did she have any intimal hyperplasia going on? Hope she is doing well. Great link, Lyon, thanks.
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Postby Perkele » Fri Apr 01, 2011 6:37 pm

Cece wrote:Perkele, did you catch this? It seems significant!


Not yet, I'm seeing EDS specialist next week. My case might take some time because of the genetic tests and situation evaluation.

I'll report my case here when something "falls through the cracks"...if so.

Peace!
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