DrSclafani answers some questions

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

Postby Cece » Sat Oct 09, 2010 9:52 am

1eye wrote:I don't know why nobody has tried what my brother has had in his jugular for nearly 50 years: a plastic shunt. Restenosis and clot-occlusion are I think much less likely.

1eye, wasn't this for hydrocephalus? This was a shunt outside of the jugular, draining the CSF from one end and depositing it into the jugular in the other? What's interesting is that you and your brother both had cerebral drainage issues.

DrSclafani, here was a question someone asked you, although it didn't land in this thread:
http://www.thisisms.com/ftopicp-137569.html#137569

My question: you once brought up the need for doctors to catch a restenosis or clotting when the vein had only narrowed rather than closed up completely. All I can think of is hypervigilance to any return of symptoms. Did you have any ideas? If this happens, is it safe to wait weeks for a follow-up or is a more immediate response going to be better for outcome?
Last edited by Cece on Mon Oct 11, 2010 4:17 pm, edited 1 time in total.
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Postby drsclafani » Sat Oct 09, 2010 9:34 pm

Nunzio wrote:
drsclafani wrote:
TMrox wrote:
"Hi Dr Sclafani

I had the CCSVI procedure done in Providence, RI on September 23, 2010. He found the iliac vein under 50% blocked.

He did angioplasty on both jugulars and the azygos, but not the iliac. Have you seen the iliac vein blocked in any of your patients? If so, what percentage and what did you do for them?


Tim, it is detected from time to time. I do not treat it if there is no symptoms from it.


Dear Dr. Sclafani,
I am afraid we are falling in the same frame of mind as most neurologists which is " Why fix a vein if the patient has no symptoms ( except MS)?"
So let me see if I can make the point.
As you know, Zamboni/Galeotti always enter trough the left side when they perform a CCSVI treatment.
The reason is that they can check for restriction of the iliac vein as it enter the Inferior Vena Cava.
In that case the blockage will force the venous flow to use the Iliac-lumbar vein as a collateral.
See picture below:
Image
The blood flow that is going through the collateral will eventually drain in the Azygous vein overloading it and not allowing proper drainage of the spinal column.
Now the patient might have well compensated the restricted flow through the collaterals and not show any signs of May-Thurner syndrome, but still the collateral is overloading the Azygous vein.
Dr Galeotti found and treated this problem in about 5% of CCSVI patients.
He also checks and treats a similar % of patients with narrowing of the renal vein for the same reason.
You can see the full PDF presentation in Italian here:http://www.ospfe.it/attach/smcferrara/docs/galeotti%20.pdf
So, in conclusion I Think IR should follow Zamboni/Galeotti lead until additional reserch come up with better technique.


nunzio
it was my impression that athey did not treat this abnormality. if the azygos vein were obstructed i might consider this, but i could be wrong

i will ask robbie what his experience is, just in case i have misunderstood him
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Postby Cece » Mon Oct 11, 2010 6:14 am

24 hours without a post!

Jugular, to get up to speed on the drsclafani story, try this post:
http://www.thisisms.com/ftopicp-136517.html#136517
or
http://www.thisisms.com/ftopicp-136770.html#136770

We are discussing elsewhere on the forum if a hemosiderin urine test would be of use in CCSVI, as it is in CVI. Zamboni did some research on CVI in the early 2000s that showed the hemosiderin test in CVI was useful in making the diagnosis and in testing afterwards to see if the surgical procedure had been successful. Possible use in CCSVI or false analogue?
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Postby Jugular » Mon Oct 11, 2010 6:54 am

Thanks for that Cece and great question!
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Postby Donnchadh » Mon Oct 11, 2010 6:54 am

Cece,

Dr. Sclafani is getting fitted for his Ferrari wheelchair team racing jacket.

Donnchadh :wink:
Last edited by Donnchadh on Mon Oct 11, 2010 10:20 am, edited 1 time in total.
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Postby Cece » Mon Oct 11, 2010 9:36 am

Nah, he took Nunzio's suggestion so seriously, he flew to Italy to ask Robbie in person. And pick up that snazzy red jacket while he's there. :D
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Postby fogdweller » Mon Oct 11, 2010 9:53 am

Cece wrote:24 hours without a post!

Jugular, to get up to speed on the drsclafani story, try this post:
http://www.thisisms.com/ftopicp-136517.html#136517
or
http://www.thisisms.com/ftopicp-136770.html#136770

We are discussing elsewhere on the forum if a hemosiderin urine test would be of use in CCSVI, as it is in CVI. Zamboni did some research on CVI in the early 2000s that showed the hemosiderin test in CVI was useful in making the diagnosis and in testing afterwards to see if the surgical procedure had been successful. Possible use in CCSVI or false analogue?


It would be nice to have a cheap, non-invasive test to signal when restenosis might have occured to warrant another veinogram. too many false positives (i.e. too sensitive) would still be worth it if it would be a sensitive indicator of when a pt should check for restenosis. Some postings show treated pts with concern almost immediately, some not for months.
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Postby drsclafani » Tue Oct 12, 2010 10:18 pm

tzootsi wrote:Dr Sclafani,

Because of the difficulties detecting azygos problems, I'm starting to hear of routine ballooning of the azygos during the procedure, even when no problem is seen. Do you think this is a good idea? Are there any negatives?


The Azygos venous system results from a"deconstruction/reconstruction" of the cardinal veins of the embryo. It results in the azygos and hemiazygos veins, and the jugular veins. The truncal areas are commonly involved with abnormalities in patients with CCSVI. One could make the case that these abnormalities are the result of malformation of those veins as the cardinal venous system changes to the mature jugular azygos system.

In addition to the truncal areas, it is also possible to develop malformations in the azygos vein proper, not just in the valvular area. This results in webs and tissue formation in the azygos veins, that might be a remnant of the immature cardinal system.

These webs are extremely difficult to see because they are small and easily obscured by the contrast media in the main channel. Some practicioners routinely use a semicompliant balloon to interrogate the vein. These balloons have "waists" or indentations when they are inflated because of the resistance to distension resulting from the webs. Thus the contrast media within the balloon is not spherical. This is a sign of webs.

Inflating the balloon to higher pressures results in angioplasty of those veins.

So yes, I think it is an interesting technique but requires balloons that do not exert too much pressure on the wall, ie...semicompliant balloons. A compliant balloon would be preferable but I have not found one in the right shape and length as a product offering.

I like this idea because the webs create pockets of resistance to flow. Failure to diagnose and treat these malformations may reduce successful outcome. However there is always risk of inflation, although it is not common. I would anticipate that there is a risk of thrombosis.Rupture of the vein is unlikely because pressures are not too high.
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Postby drsclafani » Tue Oct 12, 2010 10:29 pm

vivavie wrote:hello Dr Sclafani,

My CCSVI is probably due to the radiation I received for my tongue cancer, my veins are not healthy and flexible anymore. I posted before and I sent you all my images/reports again last week. After my angio in Aug my left jug recoiled to 2mm and a major collateral system developped. I had another venogram to correct this; 3 stents overlaping one I previously had (in April) were installed. But the blood still prefers the collaterals. Left jug now useless.

Since the Aug procedure I feel much much worse: fatigue and leg/feet pain are VERY bad. I have NO mobility problem but it is so bad that I spend 90% of my time in bed! Strangely the pain is less severe supine but my stenosis are in the jugulars!?!? Any explanation for this?

The area of reflux or the position during reflux does not correlate with the neurological manifestations of demyelination.

Statu quo is not an option! I had some improvements after 1st procedure in April. I would like to have my right jugular and my azygos angio with bigger balloons. 12 and 8mm were used. What do you think? There was a kink in azygos that was the only place ballooned, would you recommand to angio it all?


it is very difficult to make a recommendation in this circumstance. I have no access to your clinical situation. A 12 mm balloon is a good size for the azygos vein. did you feel pain during inflation. That is a good sign of whether maximum dilatation occured.

have read somewhere that Prof Tomson in Australia had to redo angio again and again on veins of a patient who had cancer. Have you hear anything about that? When I posted in Aug you mentionned that my situation would probably require stent, you have recently took position against stents. In this case, do you think repeated angio more or less risky than stents?


I do not like stents and will always try to avoid them. However, you have a very atypical appearance if your stenoses are caused by radiation. There is actually no guarantee to that! You could easily be a patient with MS who developed cancer and then got irradiated. In other words your stenoses could have been a malformation like everyone else has or it could be due to radiation stricture of the tissue that were irradiated. . Were you on immune suppression before your cancer developed?
I think repeated dilatations might be necessary and I would try that before i gave up or considered a stent.

How many times do you think a vein can take angioplasty?
Many thanks!


If you are fortunate, many times
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Postby drsclafani » Tue Oct 12, 2010 10:32 pm

fogdweller wrote:How elastic are veins? I have read a number of contributors say that they had relatively quick return of symptoms that they feared was restenosis. I had some very immediated and dramatic results that I did not expect, and about a week later those improvements have faded somewhat, still slightly better but not nearly as much as first after the procedure.

How soon would you advise a second MRV to check for restenosis?

That would be a good study; follow up MRV (noninvasive) or veinograms (invasive...maybe instal a port a la dialysis...pretty drastic)


the normal vein is very distensible, but the abnormal vein is resistant to stretch. The valvular stenoses are also problematic for the same reason.

i think that stretching the vein might work but elastic recoil must be overcome. I like the idea of overdilating the veins., especially the valves... rearing fusions is not an easy thing to do
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Postby drsclafani » Tue Oct 12, 2010 10:34 pm

fogdweller wrote:
drsclafani wrote:At some point the congenital deformity of the wall may be replaced by scar tissue that becomes too resistant to dilatation. Similarly stents are likely to have the same problems, with intimal hyperplasia and in-stent stenosis becoming resistant to dilatation.

At some point i suspect that we will need to add some things to angioplasty, either drug, or energy or structure, to reduce the frequency and degree of restenosis.


For awhile they were playing around with a "rotoroter" type device that bored out cardiac arteries to remove stenosis. I wonder if that might be useful in the more rigid scar tissue that might result from restenosis of these veins?

Although we use the same name, "restenosis", I think it is an entirely different phenomenon from restenosis in areteries clogged over time.


yes, fogdweller, i agree with that idea.

the 'rotorooter" idea is used in arteries to pull out plaques on the arterial wall. I do not think they apply hear
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Postby drsclafani » Tue Oct 12, 2010 10:36 pm

David1949 wrote:I accidentally posted this under the general CCSVI listing instead of Dr. Sclafani's thread so I'm reposting it here now.


As I understand it, the valves in the veins act like check valves allowing flow toward the heart but not in the opposite direction. But when the catheter is inserted it goes in the opposite direction, the direction that the valve does not open. How does the catheter get past the valve?

I'm thinking like an engineer not a doctor. My appologies if I misunderstand how it works.


The valve opens and closes. We try to advance the catheter when the valve is opened
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Postby drsclafani » Tue Oct 12, 2010 10:48 pm

Nunzio wrote:
drsclafani wrote:
TMrox wrote:
"Hi Dr Sclafani

I had the CCSVI procedure done in Providence, RI on September 23, 2010. He found the iliac vein under 50% blocked.

He did angioplasty on both jugulars and the azygos, but not the iliac. Have you seen the iliac vein blocked in any of your patients? If so, what percentage and what did you do for them?


Tim, it is detected from time to time. I do not treat it if there is no symptoms from it.


Dear Dr. Sclafani,
I am afraid we are falling in the same frame of mind as most neurologists which is " Why fix a vein if the patient has no symptoms ( except MS)?"
So let me see if I can make the point.
As you know, Zamboni/Galeotti always enter trough the left side when they perform a CCSVI treatment.
The reason is that they can check for restriction of the iliac vein as it enter the Inferior Vena Cava.
In that case the blockage will force the venous flow to use the Iliac-lumbar vein as a collateral.
See picture below:
Image
The blood flow that is going through the collateral will eventually drain in the Azygous vein overloading it and not allowing proper drainage of the spinal column.
Now the patient might have well compensated the restricted flow through the collaterals and not show any signs of May-Thurner syndrome, but still the collateral is overloading the Azygous vein.
Dr Galeotti found and treated this problem in about 5% of CCSVI patients.
He also checks and treats a similar % of patients with narrowing of the renal vein for the same reason.
You can see the full PDF presentation in Italian here:http://www.ospfe.it/attach/smcferrara/docs/galeotti%20.pdf
So, in conclusion I Think IR should follow Zamboni/Galeotti lead until additional reserch come up with better technique.


Nunzio
if the azygos vein is obstructed, then increased flow in that area because of renal vein and iliac stenosis is potentially deliterious. However if there is no obstruction of the azygos, then i think flow will not be overwhelming. Remember that left iliac stenosis is well compensated by using the cross pelvic collaterals into the inferior vena cava

Also, i did not find any mention of treatment of the may thurner sydrome during liberation in their paper.

We need more information
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Postby drsclafani » Tue Oct 12, 2010 10:49 pm

1eye wrote:I don't know why nobody has tried what my brother has had in his jugular for nearly 50 years: a plastic shunt. Restenosis and clot-occlusion are I think much less likely.


that plastic shunt is probably draining excess fluid from his brain. it is a different animal. Those shunts are draining water like material not high volume blood

good thought, tho!
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Postby drsclafani » Tue Oct 12, 2010 10:54 pm

Jugular wrote:
Cece wrote:
drsclafani wrote:with all due respect, i think on our side of the fence, mike dake and I have had to wait the longest....but does that mean we will get back sooner? or does it mean anthing at all

go yankees

It is crazy that the two that were first in the water have sat out this long.

I think on the MSers side the wait could also be measured in years since diagnosis, which is also humbling for me around here. But if this is the breakthrough, we made it....

Aliyalex, thanks
Zeureka, thanks too, that helped.
drsclafani, thanks as always
There is lots of awesome in this forum. :)
Can someone bring me up to speed on the Dr. Sclafani-CCSVI story? All I've been able to pick up is that his request for IRB was rejected based on bs. Have there been any legal challenges, appeals, rehearings, letter writing campaigns. We need Dr. Sclafani in the fight not on the sidelines. Who were these band of bozos who turned him down? F*^# them and the horses they rode in on.



whoa pardner!

They are just good men and women, trying to assure confidentiality and safety of the volunteers.

i did not appeal because of two insurmountable difficulties in the short term:
1. they wanted this funded by a grant, not paid for by patients.....good point, ideal actually, but i do not see pharma offering to fund this and the catheter manufacturers do not have adequately deep pockets

2. They wanted a double blinded study....i think that is premature, but probably needs to be done once we have figured out safety and best practice issues.

in the meantime, i have been continually exploring all kinds of alternatives, none of which has reached fruition. I am hopeful now, tho
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