DrSclafani answers some questions

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

Postby drsclafani » Thu Nov 18, 2010 10:23 pm

Cece wrote:
annad wrote:Dr. Sclafani,
Could you explain R versus L entry for CCSVI treatment? I understand L is preferred for catching MT Syndrome but are there other reasons and is it more dangerous than going in through the R side?
thank you in advance!
a

annad, if it helps, here is the link to the post from when he came back from Italy and we all first learned about right vs. left entry:

http://www.thisisms.com/ftopicp-117268.html#117268

CCSVIhusband,
CCSVIhusband wrote:Do you think there could be potentially any IVC issues, or have you seen any, related to CCSVI? (I know that's not part of the theory, but has anyone looked?) I have no reason to suggest there may be ... I just wonder.

Someone with a similar name asked a similar question once before :D :D

drsclafani wrote:
mshusband wrote:Dr. Sclafani ... what role do you suspect the inferior vena cava could play in issues in the legs?

i do not think that the inferior vena cava plays a role in ccsvi unless the usualy suspected veins are involved. Then alterations of flow within other structures can make it worse.

http://www.thisisms.com/ftopicp-117982.html#117982


thanks cece. i dont mind repeating some of this for people who are catching up. if i were entering this site after eight months, i would not want to read all those pages. and at this time of night, when i have to give a workshop on ccsvi at the AIM meeting in Manhattan in six hours, i appreciate the help
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Postby drsclafani » Thu Nov 18, 2010 10:40 pm

PCakes wrote:
Dr. Rubin said ...Last week, he treated a woman who had the vein procedure in Mexico.

"We found extensive clotting in the left arm reaching into the chest veins, and some of the clots had broken off and travelled to her lungs, which is called a pulmonary embolus, which is life threatening, potentially life-threatening complication."


Dear Dr Sclafani,
What would cause clotting in the arm?
Thank you,
pc


Simple balloon angioplasty of the jugular vein should rarely cause clotting down the arm. Clot forming at the site of the "controlled" angioplasty injury of the vein could happen, although the use of anticoagulation, such as heparin or its analogs, should prevent this from happening in most situations. I think it is better suited to these veins than plavix, which i believe was used in this case.

If the clot forming around the venoplasty site started to propogate and grow, it could end up in the arm, and from the arm into the pulmonary arteries.

propogation could occur spontaneously secondary to the chemicals naturally released in response to angioplasty.

however i suspect that we again have a hypercoagulability issue. perhaps a protein C or S deficiency that renders the patient a "clotter"
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Postby CCSVIhusband » Fri Nov 19, 2010 4:54 am

Cece wrote:
annad wrote:Dr. Sclafani,
Could you explain R versus L entry for CCSVI treatment? I understand L is preferred for catching MT Syndrome but are there other reasons and is it more dangerous than going in through the R side?
thank you in advance!
a

annad, if it helps, here is the link to the post from when he came back from Italy and we all first learned about right vs. left entry:

http://www.thisisms.com/ftopicp-117268.html#117268

CCSVIhusband,
CCSVIhusband wrote:Do you think there could be potentially any IVC issues, or have you seen any, related to CCSVI? (I know that's not part of the theory, but has anyone looked?) I have no reason to suggest there may be ... I just wonder.

Someone with a similar name asked a similar question once before :D :D

drsclafani wrote:
mshusband wrote:Dr. Sclafani ... what role do you suspect the inferior vena cava could play in issues in the legs?

i do not think that the inferior vena cava plays a role in ccsvi unless the usualy suspected veins are involved. Then alterations of flow within other structures can make it worse.

http://www.thisisms.com/ftopicp-117982.html#117982


Sometimes you learn, sometimes you don't.

Silly me! :oops:

Hey, I've learned a lot in 262 pages. I guess that wasn't want of them.
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Postby CCSVIhusband » Fri Nov 19, 2010 5:13 am

Dr. Sclafani

(sorry to double post).

My next question is valves of the hemi-azygos and accessory hemi-azygous ... from my very limited reading of anatomy books trying to learn here --- each of these veins has a valve at the end of them where they drain into the azygos vein?

Do you look at those valves when in there to see if they are functioning properly?

Also ... do you go into either of those veins? (do you consider them separate veins, or when you talk azygos - does that include one or both of those)?
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Postby NZer1 » Fri Nov 19, 2010 9:46 am

Hi Dr. Is micro surgery a possibility for removing the valves from the veins when there is problems with restenosis occurring repeatedly?. Some way of cutting them away or off the wall of the vein instead of ballooning to tear them?
I have no idea how small micro surgery is and if it is possible using catheter but thought that the vein will expand and contract from dilation, but the problem seems in some cases to be that the attachment area is the problem in that it has grater recoil and memory than even the cutting balloon or the larger balloons are unable to overcome.
Thank you for your explanation from Dr Jelineks comment, I have the feeling you are saying that having angio treatment on a repeated basis (like the example of the repeated esophagus patient) for some situations could be the only answer if the larger balloons do not work on a permanent basis? Not wanting to jump too far into the unknown though! Technology and clever minds are at work obviously!
I would assume that is down the track as there will be clever methods tried that we don't know of yet. :lol:
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Postby Cece » Fri Nov 19, 2010 1:11 pm

CCSVIhusband wrote:Sometimes you learn, sometimes you don't.

Silly me! :oops:

Hey, I've learned a lot in 262 pages. I guess that wasn't want of them.

It amused me greatly, it was the only reference to IVC that came up in AlmostClever's index. But it could be interpreted as Dr. Sclafani not having answered the question to your satisfaction the first time around. ;)
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Postby drsclafani » Sun Nov 21, 2010 2:32 am

NZer1 wrote:Hi Dr. Is micro surgery a possibility for removing the valves from the veins when there is problems with restenosis occurring repeatedly?.

Possibly

Some way of cutting them away or off the wall of the vein instead of ballooning to tear them?

possibly

I have no idea how small micro surgery is and if it is possible using catheter

sort of

thought that the vein will expand and contract from dilation, but the problem seems in some cases to be that the attachment area is the problem in that it has grater recoil and memory than even the cutting balloon or the larger balloons are unable to overcome.

Patience! we are exploring and there are more options. The larger balloon, higher pressure, prolonged dilatation technique is not fully explored, nor reported.


I have the feeling you are saying that having angio treatment on a repeated basis (like the example of the repeated esophagus patient) for some situations could be the only answer if the larger balloons do not work on a permanent basis?

I am not ready to say "only answer" to anything. We are still in a technical infancy.



I am disillusioned with the cutting balloon because the manufactured ones are too small and the home grown variety leave me disappointed so far. It am hopeful that high pressure balloon inflation might be really important.
I would like to illustrate this with some images from some procedures using high pressure large diameter balloons. I think that this technique can pull the stuck valve off the wall and allow freer flow.

let me illustrate with some images

The images below show a variety of attempts to open a couple of tight stenoses of the valvular area, using medium and large sized balloons under lower pressures, a poor man's cutting balloon and finally a high pressure balloon at medium and high pressures. The stenosis finally broke at high pressure when all other manuevers failed. I am optimistic that this might be a solution for this particular problem


Image
The images above show attempts to dilate a jugular confluens stenosis causing stagnation of flow, collateral veins and and obvious venographic reflux. The XXL is a medium pressure balloon with a burst rating of 8 atmospheres of pressure. the dye in the balloon (black) conforms to the opening in the vein. The balloon on the left is obviously too small. The other two images show more characteristically the "waist" on the balloon representing the area of stenosis. The balloon in the middle image clearly did not overcome the elastic force of the narrowing. On the right one sees a wire between the balloon and the wall of the vein. While better, there remains a "waist"



Image
In this set of images a high pressure balloon is used. The atlas has a burst pressure of more than 20 atmospheres. The waist remains at 8 atmospheres but the stenosis is overcome at 14 atmospheres



Image
In the left jugular of the same patient, one sees the stenosis ("waist")
at 0 atmospheres and at 10 atmospheres, but the stenosis is overcome at a pressure of 14 atmospheres



Image
Finally, the venogram after this angioplasty shows some filing defects but the flow was phenomenal. I believe the filling defect is a detached part of the valve.
Last edited by drsclafani on Sun Nov 21, 2010 10:40 am, edited 2 times in total.
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Postby David1949 » Sun Nov 21, 2010 6:59 am

Are balloons filled with air or with a liquid? It just seems that if an air filled balloon were to burst it would be like a small explosion since air compressed to 14 atmospheres would expand to a much greater volume. Bursting of a liquid filled balloon would be much less dramatic.
Last edited by David1949 on Sun Nov 21, 2010 10:21 am, edited 1 time in total.
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Postby Nunzio » Sun Nov 21, 2010 8:09 am

Dear Dr. Sclafani,
in the past I was trying to make a point in treating May-Thurner syndrome in MS patient to avoid overload of the Azygous vein and this was part of your answer:
Also, i did not find any mention of treatment of the may thurner sydrome during liberation in their paper.

Now I remember that somebody mentioned that Dr.Zamboni wanted to include this in his paper but then that part was cut out but I could not remember who said it.
Now I do thanks to Cece: It was you!
The paper never really explained why robbie did that. So as i watched that first procedure in ferrara, i noted that they did a venogram of the left iliac vein and then catheterized the left ascending lumbar vein and did another venogram. I aske paolo what that was all about and he told me that they were looking for narrowing of the left iliac vein (a congenital narrowing called May thurner syndrome) and then were looking for hypoplasia of the lumbar veins. They also looked for narrowing of the vein of the left kidney. The light went off! That was why they entered from the left side.

Paolo, why didnt you say so in your paper, I asked. Because the editors cut it out for space reasons!

Now my question. Dr. Zamboni found a similar pecentage of patients with renal vein problem as iliac vein narrowing( about 4.6%)and Dr.Galeotti showed a renal vein dilation in his PDF presentation.
http://www.ospfe.it/attach/smcferrara/docs/galeotti%20.pdf
On page 9 it showed a pre and post renal vein dilatation pictures.
Since I never heard anybody performing a similar procedure I was wondering if the idea has been abandoned.
Thanks again
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Postby phe » Sun Nov 21, 2010 9:20 am

I have a feeling the site was down right after I posted twice yesterday.

To Dr Sclafani...thank you for your answer. I'd do my best to try and lie flat. My left leg lies flat (if my right is supported by a wedge)-maybe it would be prudent to enter via the left groin?

And to Bluesky re botox...I'd be afraid of losing my standing transfers. Which I can still do esp if I take a decongestant-isn't that weird? I can stand so much more readily if I take decongestant...haven't figured out why yet...but thanks for the suggestion
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Postby bluesky63 » Sun Nov 21, 2010 10:13 am

Hi phe. :-) I know what you mean. Good luck.

Hello again Dr. Sclafani. I have been poking through old pages, and I am just blown away. You are just amazing. "Thank you" is not adequate.

On page 32 you said "i am in the process of doing an evidence based comparison of the complications of venography, venous angioplasty and anticoagulation, tysabri, copaxone and one or two other safe therapies. . . . will get back when i have all the information"

I am curious if you have any data or impressions you could share, on or off line?

I am especially interested because I have been saying that people should draw a distinction between venoplasty and stenting -- that venoplasty is relatively benign. Am I wrong? I don't want to say something that is not accurate.

I am also concerned about the potential for a rising backlash against the entire CCSVI concept because the publicity about dangers and tragic complications from lack of follow-up and medical tourism makes it sound as though the entire concept is flawed and all treatment is dangerous. It is absolutely appropriate to be disturbed about the lack of appropriate care for people who need it, but there should be a distinction between venoplasty and stenting. (Or am I being too pedantic?)

Under the right circumstances, I wonder what the actual safety profile of venoplasty (or venous angioplasty) would be. Especially stacked up against the other MS choices. Thank you so much for any thoughts. :-)

(If you have already addressed this I apologize for a repeat.)
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Collateral veins post-ccsvi treatment

Postby dk » Sun Nov 21, 2010 10:23 am

Dr. Sclafani,

I was diagnosed RRMS 14 years ago, but looking back realize I've had ms since I was 16 (I'm 44). The first 6 or 7 years after diagnosis I had a worse time of it, but things have settled down and my biggest problems are bladder related and constant pain/spasticity in my legs for which I receive botox injections.

I've had an mrv (I'm on your waiting list) and it looks to me like I have a bunch of collateral veins. So my theory, which could be wrong, is that at some point I grew enough collateral veins to handle a good part of the flow and that's why some of my symptoms improved. For example, I had pretty bad fatigue about 9 years ago for several years, but that is gone. I also used to have brain fog but don't anymore. And no more problems remembering words or what I was talking about in the middle of a sentence.

When I get the procedure done and if it is successful, the collateral veins will no longer be needed. But if I restenose, say a few months later, will the collateral veins still be there to handle the flow, or do they shrivel up from non-use?

Thanks for all you do here, I read every post you make!
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Postby Cece » Sun Nov 21, 2010 1:22 pm

To any lurking MDs, welcome, I hope you are finding this thread as educational and enjoyable as we all do.

Dr. Sclafani, that's amazing, thank you for posting those images and explaining them. I am glad too that the result for the patient was phenomenal flow. I wish the same for all of us.

My questions: are these high pressures now enough to increase the risk of rupture? Is this going beyond what Dr. Sinan had been doing, since we've been relying on his reported demonstration of safety?

(here you say Dr. Sinan was likely using moderate pressure given the type of balloons he uses:
http://www.thisisms.com/ftopicp-126911.html#126911 )

In the unlikely event of rupture, what would you do? A few months back, it was said on the forum by someone that some doctor (sorry, I can dig for specifics....) had experienced a rupture and had solved it by placing a stent.

(David1949, they're liquid-filled, try here: http://www.thisisms.com/ftopicp-126913.html#126913 )
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Postby Cece » Sun Nov 21, 2010 1:37 pm

Nunzio wrote:
The paper never really explained why robbie did that. So as i watched that first procedure in ferrara, i noted that they did a venogram of the left iliac vein and then catheterized the left ascending lumbar vein and did another venogram. I aske paolo what that was all about and he told me that they were looking for narrowing of the left iliac vein (a congenital narrowing called May thurner syndrome) and then were looking for hypoplasia of the lumbar veins. They also looked for narrowing of the vein of the left kidney. The light went off! That was why they entered from the left side.

Paolo, why didnt you say so in your paper, I asked. Because the editors cut it out for space reasons!

That remains quite the punchline! But, Nunzio, this still only says that they look for the problems, not that they treat them when they find them.

Concerned posted an article that has gone missing since yesterday, in our mini-rapture of missing posts. It addressed the conflict between the MT syndrome experts in Jackson MS, who use a lot of stents in treating MT syndrome and have stats to back up the use of them, and another doctor arguing for sticking to the standard of care which has been not to treat so aggressively. What it said to me was that our own conflict, where people are diagnosed by Dr. Siskin or other doctors with MT syndrome and then sent home untreated, is in part due to the greater conflict where the docs don't know whether to be aggressive or not in treating MT.
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Postby Nunzio » Sun Nov 21, 2010 2:42 pm

Hi Cece, I agree with you, and that was dr. Sclafani point that maybe they were just looking and not treating these lesions even though I know they treated at least one renal narrowing with significant improvement in blood flow as shown in Dr. Galeotti presentation.
May-Thurner syndrome is a tricky situation because normally if the narrowing of the iliac vein is well compensated and there is no significant leg symptomatology then the doctor tend not to treat it but, in our case, it is the compensation that bypass the blockage and drain the blood in the azygous that causes the problem.
I hope soon Zamboni or any other doctor will come up with the answer.
If this was my case I would still opt for balloon dilation and hold on stenting even though it looks like stents hold pretty well in the iliac vein. Patients with azygous problem should consider this treatment even more seriously.
So in conclusion we need more studies to answer this and other questions.
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