DrSclafani answers some questions

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

Re: ccsvi

Postby drsclafani » Mon Nov 08, 2010 7:17 pm

blossom wrote:dr.sclafani, this question may have been answered somewhere already. ?
after angioplasty only how long should i be concerned about clots developing or scar tissue. i know people can get restenosis probably anytime and if so does it seem the restenosis is worse or has that been established?

i got a reg. doppler done here in my hometown "not zambonni type" they say no clots and i have flow. this was done two mo. after procedure as i was concerned because i got a numb leg immediatly after procedure and still persist. any very small improvements have gone. except, a persistent pain that when in bed it would go up the back of my head very often. about 5 days after procedure it was very severe for just a short time and i have not had it since.

anyway, how long should i be concerned? and if i would pursue this again does it look like there are things coming up that will reduce these risks?

it has been 3 mo. since procedure and i actually feel worse and symptoms are worsening.

i had emergency appendix surgery oct 2 and i know it knocked me for a loop too.


i think that restenosis is a life long concern with any venous stenosis. Thrombosis is most likely to occur within a few months of the procedure, although restenosis could also cause thrombosis whenever it occured.
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Postby Cece » Mon Nov 08, 2010 7:33 pm

drsclafani wrote:
saks wrote:No Cece. Why?


let me steal cece's thunder for a change

because it is unusual to have upper narrowings without something being wrong in the lower jugular near the valves

saks, yes, this is why.

Will your NY doc be more experienced with CCSVI than your local doc was?

Some upper narrowings must be real? I am not sure on that point. But some are definitely physiological narrowings; they can expand but don't because the vein has an overall low flow due to an outflow obstruction lower down and collaterals that divert the flow. Physiological narrowings should not be treated, they will expand on their own after the lower obstruction is treated. I cannot say if this is what you have, I have no expertise.

(here is where drsclafani explained what I was trying to explain:
http://www.thisisms.com/ftopicp-121937.html#121937 )

Dr. Sclafani, you have so much thunder to spare, you notice the little bits I make off with? I am particularly good at answering requests for Holly's email....
Last edited by Cece on Mon Nov 08, 2010 8:31 pm, edited 1 time in total.
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Postby eyesclosed » Mon Nov 08, 2010 7:46 pm

drsclafani wrote:IN A NORMAL PERSON, IF YOU SUBTRACT THE CROSS SECTIONAL AREA OF THE JUGULAR VEIN IN THE UPRIGHT POSITION (SUPPOSED TO BE SMALLER) FROM THE JUGULAR VEIN CROSS SECTIONAL AREA LYING DOWN (SUPPOSED TO BE LARGER) YOU GET A DELTA THAT IS LARGER THAN ZERO.

IN CCSVI, THE THE JUGULAR VEIN DOES NOT DISTEND WHEN LYING DOWN BECAUSE THERE IS NO INCREASE IN FLOW THROUGH IT, BECAUSE OF OBSTRUCTIONS. THEREFORE WE OFTEN GET A SMALLER DELTA



Thank you Dr S!

You have no idea how much I appreciate your answer. It’s quite possible that I would have imagined the worst case scenario and believed it without your reply (I was in the process of doing just that :oops: )
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Re: skeptic mentality

Postby Cece » Mon Nov 08, 2010 8:04 pm

drsclafani wrote:I see these veins in MS and i am convinced they are abnormal. When i show my vascular colleagues , they are impressed. They readily accept that this is not normal. Why....need i answer? it is our expertise and we know what looks normal.

I laid this question to rest in my own mind a long time ago. So many doctors agree, this is not normal.
it is inconceivable to me that pathologists looking at veins long enough to note the absence of valves in 15% of patients would not have recognized stiff, inflexible, stenotic valves or stenoses above the valves due to hypoplasia , and not commented on that in papers reviewing the normal anatomy.

This is convincing, I had not thought about it that way.

as i said above I WAS looking for abnormalites like narrowing, which is a common imaging finding of trauma.

I didn't know that.

What a career...and to top it off with CCSVI.
Many of the procedures were performed to EXCLUDE injury and provide a reason NOT to surgically explore the neck. In these situations, where there were no hematomas, the veins were large, uniform in caliber, did not have extensive collateral veins, the xray dye did not hold up at the base of the neck. There were no stenoses.

This is helpful too. All we see here are each other's images...the abnormal starts to look normal, when it's all you see.
but in answer to your assumption that in the heat of battle things get missed, i would say generally no. When life and death are in the balance, my mojo gets going and i think i become hyperaware, not distrated or sloppy. its the nature of the game.

Whether they knew or not, I think your patients have been fortunate to be your patients.

Thanks for addressing all of this.
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Postby bestadmom » Mon Nov 08, 2010 8:07 pm

"Whether they knew or not, I think your patients have been fortunate to be your patients. "

Amen
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Postby malden » Tue Nov 09, 2010 12:20 am

i appreciate your skepticism, it makes me think.

so nice of you to visit btw


It's not the scepticism, it's just a question. And I still appreciate for your answer.
Drop was regarding my answer to those who answered questions addressed to you, instead of you. And "Sry..." was to person who polite ask me to drop it.

Best regards, M.
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Postby SaintLouis » Tue Nov 09, 2010 6:50 am

Dr. Sclafani:

Do you think taking a calcium channel blocker just prior to and/or after venoplasty might help the veins stay open?

On the flip side, do you think it could hurt?

Thanks,
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Postby Cece » Tue Nov 09, 2010 8:14 am

drsclafani wrote:
saks wrote:No Cece. Why?


let me steal cece's thunder for a change

because it is unusual to have upper narrowings without something being wrong in the lower jugular near the valves

This made me smile, btw.
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ccsvi

Postby blossom » Tue Nov 09, 2010 5:39 pm

dr. sclafani, thank you for answering my questions. AND, A BIG BIG THANK YOU FOR TAKEING YOUR VALUABLE TIME TO BE HERE ON SITE!!

are you still answering pm's and looking over procedures done elsewhere?
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Third procedure -Risks?

Postby mlrm » Wed Nov 10, 2010 12:48 am

Dr. Sclafani,

Its Marie Louise from Denmark! You treated me back in March 2010, by openeing both the right and the left jugular vein. I felt great and almost all of my symptoms disapeared!

As you may remember my right vein collapsed on the airplane back home to DK. I felt it right away by experiencing almost fainthing, extreme dizzyness, extreme fatigue and intense heartbeat.

In June I had the right vein opened again, with balloon, in Euromedic Poland. No Probs for 3 months. I had a great summer without fatigue, dizzyness, intense heartbeat, pain and so on. :D

No doctor believed that going on an airplane could be the cause of the collaps. So I chose to travel again for a vacation we had bought back in January. Destination: Rome.

Know you might guess what happened in Fionicino airport? Yes!: almost faingthing, extreme dizzyness, extreme fatigue and strong heartbeat. Can you imagine our trip to the Vatican :?

Anyway: Simka scanned my veins again and says that there are problems in both the right and left side. I am going to have the procedure newt monday ( the 15th of Nov.). Since I refuse to have a stent, Simka started talking about cutting balloons.

My QuestionS to you: I never heard about anyone having the procedure three times. Do the risks increase everytime they do it?

Do you think a cutting balloon might help me, or should I just stay away from airplanes?

Sincerely

Marie Louise
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Postby fogdweller » Wed Nov 10, 2010 9:36 am

Dr. S., how convinced are you that CCSVI is congenital? One recent study suggests it is caused by chronic MS and not present at all in most early MS cases.

http://www.ncbi.nlm.nih.gov/pubmed/21041329
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Postby Cece » Wed Nov 10, 2010 9:52 am

fogdweller wrote:Dr. S., how convinced are you that CCSVI is congenital? One recent study suggests it is caused by chronic MS and not present at all in most early MS cases.

http://www.ncbi.nlm.nih.gov/pubmed/21041329

Dreddk posted the methodology and details of this study in a series of posts starting here:
http://www.thisisms.com/ftopicp-141823.html#141823
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Postby eyesclosed » Thu Nov 11, 2010 9:53 pm

Dr Sclafani,

I have a second question that I am sure has been asked before (but I cannot find your reply). I have read that you will not be using stents when you resume treating patients. I do not feel comfortable either with stents at this point in time and Dr. Zamboni does not recommend using stents at the moment either.

Some doctors use stents in cases where the vein closes up more during ballooning compared to how it was before the procedure. The rationale being that if opening up the veins might have a positive effect on your ms then, if your veins are in a worst condition than they were before the procedure, it might have a negative effect on your ms.

What do you (and or others) do when someone’s veins are in a worst condition after venous angioplasty? Do you try to balloon the area again? I am trying to make up my mind about whether or not I want to be treated by a doctor who might use stents (even if the odds are low) in the situation explained above and to make up my mind, I need to know how doctors who do not you stents deal with this particular situation.
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Re: ccsvi

Postby drsclafani » Fri Nov 12, 2010 8:18 am

blossom wrote:dr. sclafani, thank you for answering my questions. AND, A BIG BIG THANK YOU FOR TAKEING YOUR VALUABLE TIME TO BE HERE ON SITE!!

are you still answering pm's and looking over procedures done elsewhere?


This is one of the most difficult things i have ever done.

i still try to review CDs of procedures performed elsewhere: i have learned so much about what not to do!

but sometimes it takes a very long time to answer as each one of those damn cds uses a different software, sometimes they freeze up my computer, sometimes the exe files are missing. I would guess it takes at least an hour per case. So i am still willling to look if you are willing to wait or perhaps never get an answer
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Re: Third procedure -Risks?

Postby drsclafani » Fri Nov 12, 2010 3:17 pm

mlrm wrote:Dr. Sclafani,

Its Marie Louise from Denmark! You treated me back in March 2010, by openeing both the right and the left jugular vein. I felt great and almost all of my symptoms disapeared!

marie Louise: I could never forget you! You were inspirational for your hopefulness, courage and gentleness., not to mention your beauty (which i just mentioned)

As you may remember my right vein collapsed on the airplane back home to DK. I felt it right away by experiencing almost fainthing, extreme dizzyness, extreme fatigue and intense heartbeat.


how could i ever forget. transatlantic travel for liberation is not without risks.

In June I had the right vein opened again, with balloon, in Euromedic Poland. No Probs for 3 months. I had a great summer without fatigue, dizzyness, intense heartbeat, pain and so on. :D

that was great. so it wasnt thrombosis? Thats a relief. just a simple case of restenosis.

No doctor believed that going on an airplane could be the cause of the collaps. So I chose to travel again for a vacation we had bought back in January. Destination: Rome.

Know you might guess what happened in Fionicino airport? Yes!: almost faingthing, extreme dizzyness, extreme fatigue and strong heartbeat. Can you imagine our trip to the Vatican :?


I do not think the plane ride did this. I think it was the inadequacy of the venoplasties, both the american and the polish varietes.

Anyway: Simka scanned my veins again and says that there are problems in both the right and left side. I am going to have the procedure newt monday ( the 15th of Nov.). Since I refuse to have a stent, Simka started talking about cutting balloons.

My QuestionS to you: I never heard about anyone having the procedure three times. Do the risks increase everytime they do it?


yes, i think you should have it, you are surely an improver after the angioplasty. I think the risks are the same. Unfortunately i think the results will be the same.....initial improvement then recurrent symptoms when the valve restenoses.

[/quote]Do you think a cutting balloon might help me, or should I just stay away from airplanes?

Sincerely

Marie Louise[/quote]

my original forays into this used 10 mm balloons because i wanted to follow the zamboni protocol as much as possible before venturing out into uncharted territory. Restenosis was common...i thought we were not dilating wide enough.

Gradually going from ten mm balloons to cutting balloons and 14 mm balloons but still not satisfied.

Frankly, i do not think that cutting balloons are going to work. The largest commercially available cutting balloon i have is 8 mm in diameter. i do not think it made a difference after all. Others have used "poor man" cutting balloons using regular guidewires pressed against the wall by balloon catheters together to attempt creation of a better device. Perhaps they will work. I am currently looking at 16-22 mm balloons in attempts to exceed the elastic recoil of the narrowed segment.

So good luck with marian.

sal
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