DrSclafani answers some questions

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

Postby drsclafani » Sun Feb 13, 2011 11:35 am

sara-sama wrote:
Donnchadh wrote:Dr. Sclafani:

You previously posted some images of what a stenosis actually looks like (from a cadaver). However these images are no longer available. Would you please re-post them as I wish to have something to show others?

Thanks!

Donnchadh


http://www.freeimagehosting.net/uploads/ff6d207b47.jpg


i BELIEVE THAT THESE IMAGES GOT INVOLVED WITH OTHERS THAT WERE RESTRICTED BY AN AUTHOR.

TO REFRESH:
A PATIENT WITH REVERSED VALVES CAUSING OBSTRUCTION. hAD SURGERY TO CORRECT. I DO NOT KNOW THE CLINICAL OUTCOME OF SURGERY

Image
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Re: Treating Siblings

Postby drsclafani » Sun Feb 13, 2011 11:41 am

girlgeek33 wrote:
drsclafani wrote:
i have not treated any siblings at this point. I am working up a mother daughter pair and have treated the mother. I doubt that they will have mirror image findings because they are so different in age. Their clinical presentations are also different.

but we will see.


I'm still looking to have my daughter's veins looked at. Haven't discussed in some time, so to refresh, she has been going through a dx process and to date still undx. Her symptoms are very similar to MS, yet spine & brain MRI do not warrant an MS dx. She is following the trail her docs are leading her on, and the latest is a gastro doc that doesn't think she has anything wrong, that it is in her head. Sound familiar MSers? She is only 21. I don't know what my brain scans would have looked like back at that age, but I can trace my symptoms back to about 20. Knowing what we do about CCSVI, I wonder if this is the early signs of CCSVI on her cerebral vascular system. But, because she is not already dx with MS, nobody will even do a doppler. This has been undx since she was 14, with worsening at about age 20 to bring us back to the doctors. As a mother, I want to avoid her ever getting MS. I realize we are at the early stages of CCSVI understanding. At what point will anyone look at veins of a patient like my daughter? Time is brain after all...


if there is any accuracy to the recent paper that did not find significant ccsvi in cis or early ms, then might this test be normal?

Testing as a curiosity is one thing. I am happy to screen but what will your daughter want to do with the information? Get a venogram? start treatments?

these are not easy questions
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Postby drsclafani » Mon Feb 14, 2011 9:23 pm

My group at american access care is putting together a educational process for our staff regarding ccsvi and multiple sclerosis.

We are looking for a volunteer who is a nurse with MS who can work with our nurse educator to put this together.

please pm me if you are interested in helping us develop compassionate empathic and understanding workers who can help us develop our ccsvi program

thanks

s
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CCSVI without MS

Postby ozwannabe » Tue Feb 15, 2011 5:15 am

Hi,
I've been lurking and absorbing this great thread while waiting for my lucky number to come up for liberation in Sydney. Unfortunately it came up but was cancelled two months out.

My son who is 21 has had symptoms suggestive of MS but not on MRI for a little over six months. He has deteriorated quickly to the point where he needs two crutches to walk even a short distance and has had to stop work. I convinced him to have ultrasound as well and he also has flow problems.

So what to do. Dr Sclafani I remember you saying if there's MS there's CCSVI. How likely do you think it is in the reverse? Would you recommend venogram in this instance?

Cheers,
Vicki
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Postby Vivianne766 » Tue Feb 15, 2011 11:47 am

brave wrote:Hello Dr Sclafani
I had my CCSVI procedure done at Albany on 11/24/10

looking at my ultrasound result (before procedure), I see that I met criteria #1 and result was negative for other 4 tests

criteria #1: Gray-Scale abnormalities of the proximal internal jugular veins. This is positive when valve
abnormalities, flaps or membranes are identified within the lumen of the internal jugular vein

Finding: positive on the right , positive on the left


and looking at ultrasound result (after procedure), I see that result for criteria #1 is negative but strangely criteria #4 changed to positive after my procedure

criteria #4: Reflux in the internal jugular and/or vertebral veins in the spine (0 degrees) and upright (90 degrees)position. This is positive when flow reversal is identified in both positions on Doppler imaging for > 1.5 seconds

findings: Negative on the right and positive on the left side with 504 ms degree of reflux
in the distal left internal jugular vein

I would like to ask you, what could be the reason that criteria #4 changed to positive after CCSVI procedure?

also my left foot has swollen badly since 12/25 (ultrasound hasn't shown any blood clot) , could this swallow being developed as result of issue mentioned in criteria #4

and last not the least
Do you see me a candidate for second CCSVI procedure with you(need to mention that so far I haven't had noticable improvement after my CCSVI on 11/24

Thanks in advance,
brave


Dear Dr. Sclafani,
I also have done my procedure in Albany. My procedure was in October 2010.
After the procedure I still have 3 out of 5 CCSVI criteria as positive.
Like my friend brave I also would like to know if I can have a 2nd chance on this. This time with you.
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Postby drsclafani » Tue Feb 15, 2011 8:31 pm

msjen wrote:I am having some trouble understanding some of this...
Is it possible to only have reflux? It seems as though the valves are responsible for this and if not properly addressed could cause an unsuccessful procedure? Any thoughts?


msjen
there are two kinds of reflux, both of which send blood up toward the brain...

one, caused by incompetent valves, resulting in blood from the heart traveling up toward the brain

The other, caused by obstructions of the veins or valves, results in blood from the brain, traveling toward the brain in order to exit through some collateral.

All the physicians who have been practicing for some time have known for a long time that the valves were the culprits.

By the use of IVUS, i have come to believe that fusion of the valve leaflets results in a funnel that causes the stenosis in most cases. Others have a narrow annulus of the valve that results in a stenosis.

For me, the next challenge is trying to determine which of these two malformations, the annulus stenosis and the leaflet fusion, is present.
Last edited by drsclafani on Tue Feb 15, 2011 9:00 pm, edited 1 time in total.
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Postby Cece » Tue Feb 15, 2011 8:47 pm

drsclafani wrote:By the use of IVUS, i have come to believe that fusion of the valve leaflets results in a funnel that causes the stenosis in most cases. Others have a narrow annulus of the valve that results in a stenosis.

For me, the next challenge is trying to determine which of these two malformations, the annulus stenosis and the leaflet fusion, is present.

Any differences in how you would treat an annulus stenosis as compared to a leaflet fusion?

drsclafani wrote:i BELIEVE THAT THESE IMAGES GOT INVOLVED WITH OTHERS THAT WERE RESTRICTED BY AN AUTHOR.

TO REFRESH:
A PATIENT WITH REVERSED VALVES CAUSING OBSTRUCTION. hAD SURGERY TO CORRECT. I DO NOT KNOW THE CLINICAL OUTCOME OF SURGERY

Is surgery the best option, for patients with reversed valves?

thank you....
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Re: CCSVI without MS

Postby drsclafani » Tue Feb 15, 2011 8:57 pm

ozwannabe wrote:Hi,
I've been lurking and absorbing this great thread while waiting for my lucky number to come up for liberation in Sydney. Unfortunately it came up but was cancelled two months out.

My son who is 21 has had symptoms suggestive of MS but not on MRI for a little over six months. He has deteriorated quickly to the point where he needs two crutches to walk even a short distance and has had to stop work. I convinced him to have ultrasound as well and he also has flow problems.

So what to do. Dr Sclafani I remember you saying if there's MS there's CCSVI. How likely do you think it is in the reverse? Would you recommend venogram in this instance?

Cheers,
Vicki


vicki
my experience has been the narrowing of the veins, predominantly in the valves, and shown on IVUS to be fused valve leaflets,is etremely common in patients with multiple sclerosis. There are several causes of ccsvi, namely radiation to the neck, surgical ligations, renal failiure patients who have had multiple catheters placed in the jugular veins for dialysis and subsequently developed stenoses.

But excluding these causes, ccsvi suggests MS. But the standards of the diagnosis of MS do not include vein problems. I would be surprised if a neurologist would consider the diagnosis of m s based upon the presence of ccsvi!

i do not perform venography without some evidence of reflux, so we perform an ultrasound and interpret it by the zamboni criteria. if positive or equivocal for CCSVI i would perform a venogram on any symptomatic patient
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Postby drsclafani » Tue Feb 15, 2011 9:17 pm

Vivianne766 wrote:
brave wrote:Hello Dr Sclafani
I had my CCSVI procedure done at Albany on 11/24/10

looking at my ultrasound result (before procedure), I see that I met criteria #1 and result was negative for other 4 tests

criteria #1: Gray-Scale abnormalities of the proximal internal jugular veins. This is positive when valve
abnormalities, flaps or membranes are identified within the lumen of the internal jugular vein

Finding: positive on the right , positive on the left


and looking at ultrasound result (after procedure), I see that result for criteria #1 is negative but strangely criteria #4 changed to positive after my procedure

criteria #4: Reflux in the internal jugular and/or vertebral veins in the spine (0 degrees) and upright (90 degrees)position. This is positive when flow reversal is identified in both positions on Doppler imaging for > 1.5 seconds

findings: Negative on the right and positive on the left side with 504 ms degree of reflux
in the distal left internal jugular vein

I would like to ask you, what could be the reason that criteria #4 changed to positive after CCSVI procedure?

also my left foot has swollen badly since 12/25 (ultrasound hasn't shown any blood clot) , could this swallow being developed as result of issue mentioned in criteria #4

and last not the least
Do you see me a candidate for second CCSVI procedure with you(need to mention that so far I haven't had noticable improvement after my CCSVI on 11/24

Thanks in advance,
brave


Dear Dr. Sclafani,
I also have done my procedure in Albany. My procedure was in October 2010.
After the procedure I still have 3 out of 5 CCSVI criteria as positive.
Like my friend brave I also would like to know if I can have a 2nd chance on this. This time with you.


thanks, flattery will get you everywhere.

This question seems to be coming up frequently.

what are the reasons to have a second procedure?
1. incomplete study
2. equivocal findings
3. missed diagnoses
4. fleeting improvements
5. recurrent symptoms
6. suspicion of thrombosis
7. recurrent CCSVI ultrasound findings?
8. a simple desire to have a second look
9. a mistrust of the first operator
10. feeling worse after the procedure.

if anyone has other ideas, please share them here so we can start to look at why second procedures are done.

Is dissatisfaction with the clinical improvements, or lack thereof, an indication for a second procedure?

what are the ultrasound findings that should go away after treatment?

I would think, (my conjecture) that reflux would be common after angioplasty because the valves are opened by angioplasty. Perhaps reflux can come from the heart toward the brain by an incompetent valve?
can valve thickening be caused by balloon angiopastly?

So i am unclear what happens on the ultrasound after treatment.

The questions about the ultrasound screening are intriguing to me. I intend to ask quite a few questions during the consensus panel discussions on ultrasound at the ISNVD meeting on March 13-15 in Ferrara Italy. they will focus upon the value and interpretation of the postprocedural ultrasound.

On to the question of whether you personally, and your good friend BRAVE should undergo a second treatment by me.

Brave continues to have symptoms and you continue to have ultrasound findings of ccsvi. I guess the most logical thing to do is to have a consultation and a review of yourimaging and interventions to see if there is anything i do differently from the siskin group that might make a difference.

But the answer to your question in the absence of some objective indication like a missed valvef, undersizing balloons, etc is that i dont know
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Postby drsclafani » Tue Feb 15, 2011 9:23 pm

Cece wrote:
drsclafani wrote:By the use of IVUS, i have come to believe that fusion of the valve leaflets results in a funnel that causes the stenosis in most cases. Others have a narrow annulus of the valve that results in a stenosis.

For me, the next challenge is trying to determine which of these two malformations, the annulus stenosis and the leaflet fusion, is present.

Any differences in how you would treat an annulus stenosis as compared to a leaflet fusion?


cece, first i have to differentiate them. Then i can analyze whether was I do has different outcomes in these two patient populations.

perhaps the annulus requires much greater pressures to dilate. perhaps some form of disruption of the annulus together with stent reinformcement or artificial valve would b useful. Perhaps surgical resection.
we are not there yet.

drsclafani wrote:i BELIEVE THAT THESE IMAGES GOT INVOLVED WITH OTHERS THAT WERE RESTRICTED BY AN AUTHOR.

TO REFRESH:
A PATIENT WITH REVERSED VALVES CAUSING OBSTRUCTION. hAD SURGERY TO CORRECT. I DO NOT KNOW THE CLINICAL OUTCOME OF SURGERY

Is surgery the best option, for patients with reversed valves?

thank you....[/quote]

i do not know. i have no experience
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Re: CCSVI without MS

Postby ozwannabe » Tue Feb 15, 2011 9:54 pm

drsclafani wrote:
ozwannabe wrote:Hi,
I've been lurking and absorbing this great thread while waiting for my lucky number to come up for liberation in Sydney. Unfortunately it came up but was cancelled two months out.

My son who is 21 has had symptoms suggestive of MS but not on MRI for a little over six months. He has deteriorated quickly to the point where he needs two crutches to walk even a short distance and has had to stop work. I convinced him to have ultrasound as well and he also has flow problems.

So what to do. Dr Sclafani I remember you saying if there's MS there's CCSVI. How likely do you think it is in the reverse? Would you recommend venogram in this instance?

Cheers,
Vicki


vicki
my experience has been the narrowing of the veins, predominantly in the valves, and shown on IVUS to be fused valve leaflets,is etremely common in patients with multiple sclerosis. There are several causes of ccsvi, namely radiation to the neck, surgical ligations, renal failiure patients who have had multiple catheters placed in the jugular veins for dialysis and subsequently developed stenoses.

But excluding these causes, ccsvi suggests MS. But the standards of the diagnosis of MS do not include vein problems. I would be surprised if a neurologist would consider the diagnosis of m s based upon the presence of ccsvi!

i do not perform venography without some evidence of reflux, so we perform an ultrasound and interpret it by the zamboni criteria. if positive or equivocal for CCSVI i would perform a venogram on any symptomatic patient


Thanks Dr Sclafani,

You really are a top bloke :D Now to find someone here. Wish there was one of you in every city. Then we'd have this thing beat!

Cheers,
Vicki
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Postby mavis » Wed Feb 16, 2011 8:34 am

drsclafani wrote:
What are the reasons to have a second procedure?
1. incomplete study
2. equivocal findings
3. missed diagnoses
4. fleeting improvements
5. recurrent symptoms
6. suspicion of thrombosis
7. recurrent CCSVI ultrasound findings?
8. a simple desire to have a second look
9. a mistrust of the first operator
10. feeling worse after the procedure.


Dear Dr. Sclafani,

Unfortunately I fall under "6" as I have a blood clot in my stent in the jugular.

What would your approach be towards the blood clot? Would you try to take it out or do clots fall into the "don't poke the mama bear" category?

Thanks for the answer.
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Re: CCSVI without MS

Postby Rokkit » Wed Feb 16, 2011 8:51 am

drsclafani wrote:i do not perform venography without some evidence of reflux, so we perform an ultrasound and interpret it by the zamboni criteria. if positive or equivocal for CCSVI i would perform a venogram on any symptomatic patient

Do you require an MS diagnosis?
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Postby Cece » Wed Feb 16, 2011 10:28 am

drsclafani wrote:cece, first i have to differentiate them. Then i can analyze whether was I do has different outcomes in these two patient populations.

perhaps the annulus requires much greater pressures to dilate. perhaps some form of disruption of the annulus together with stent reinformcement or artificial valve would b useful. Perhaps surgical resection.
we are not there yet.

How exciting. We are not there yet but we are getting further. What a gift to have minds like yours and the other investigators at work on this.

I am curious, what percentage of the patients you've been treating are first time patients (no previous ccsvi treatment)?
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Postby newlywed4ever » Wed Feb 16, 2011 6:30 pm

Dr Sclafani - just a quick update...you treated me on 1/28/11. I am PPMS and had my first procedure in Albany with noticeable improvements that disappeared after a couple of months. You found problems with thickened valves in right IJV, poor movement of valves and thickening of valve leaflets in azygous and these areas were ballooned & dilated. My left IJV was occluded/thrombosed/absent and treatment was not possible. Since leaving Brooklyn, I came down with the cold from hell (gotta love those flying bug boxes!). I am just now feeling like I'm on the mend. I have seen both my GP and massage therapist this week AND they both commented on improvements!! The GP noticed that my temp was actually normal 98.6 - the first time recorded in over 5 years (the norm for me was 97.4). Today, my massage therapist commented that she had a difficult time remembering which leg was my problem leg as they both seemed to feel the same in temp and were equally pliable. And, now I sweat (for better or worse - ha!). Needless to say, every little improvement is huge!! There are other "pending" improvements, I'm sure :D
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