DrSclafani answers some questions

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

Postby Johnson » Thu Mar 25, 2010 6:39 pm

bluesky63 wrote:Dr. Sclafani, I want to thank you and everyone for this great thread -- educational, eye- opening, and who could have guessed it could be so emotional and funny.

I think that somewhere in here you indicated that the venogram is a steep learning curve. By that, do you mean it's success is going to be dependent on the experience of the person doing it? I think what I'm asking is, if a person has a venogram to assess for CCSVI, how critical is it to go to someone who has already been working with this issue?

Or would you safely assume that any competent vascular specialist would recognize these malformations and be able to treat them?

We worry about these details as we bring this stuff to local vascular specialists.

Thank you from the heart for your thoughts and time. :-)


I would like to re-iterate that question. The local sonographer told me that my sonogram was normal - that the weird valve stuff going on, the reflux in the colour Doppler, the distinct narrowing of the IJV proximal to the clavicle were pretty normal. He has seen things like it before - like in all 100 PwMS he has scanned! He did concede that the lack of collapse of my IJVs when erect was abnormal.

I do tend to go on, but, as blueskies asked, ought we to be confident that any competent vascular surgeon, interventional radiologist, etc., would see bad valves, stenosis, etc., as something to be treated? There was the doctor in Australia who went in, and backed out without treatment.
My name is not really Johnson. MSed up since 1993
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Postby hopeful2 » Thu Mar 25, 2010 6:45 pm

I want to re-visit Dr. Sclafani's post since it isn't every day that we hear about new insights in treatment. Thanks Dr. S. for sharing this with us:

"Today I learned something new in my treatments. I thought i would share.

I have been concerned about incomplete dilatation of the veins when using venous angioplasty, expecially when i think the problem is incompletely opening valves. Sometimes even with very large balloons, i have been dissatisfied with the amount of widening i achieve.

Today I added a cutting ballloon to my amamentarium of tools for use in liberation. This balloon has some sharp edges of metal attached to the balloon. When the balloon is opened, the metal presses into the tissues. it creates a indentation. After creating the creasing of the vein or valve, I then went to my usual 14 millimeter high pressure balloon and the vein dilated so easily and smoothly. it was like buttah! and created a very large venous confluens.

Is this a consistent benefit? Is there any new risk? Will this reduce recurrent stenosis?"

My one thought concerned the health of the lining of the veins. If the endothelial lining isn't strong and you put sharp little edges in it, could it weaken the vein? I'm not trained in the sciences so my apologies if this question is a foolish one. (P.S. I'm on your list as well.)

Patrice
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Please clarify something for me.

Postby larmo » Thu Mar 25, 2010 6:52 pm

Dr. Sclafani,
Please clarify something for me. When someone talks about a vein narrowing by 50%, are they talking about diameter or area ? (I'm doubting it's circumference). Is this standardized in the medical community or should I liken it to marketing (Say whatever to sell something) ?

Talking in general terms for ease of math, a tube that is 1" in diameter is half the diameter of a 2" tube. The area of a 2" tube is much larger than twice that of a 1" tube.

It makes a big difference when we are talking about something this critical.

Larry
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Postby drsclafani » Thu Mar 25, 2010 10:20 pm

Dr. Sclafani,
Please clarify something for me. When someone talks about a vein narrowing by 50%, are they talking about diameter or area ? (I'm doubting it's circumference). Is this standardized in the medical community or should I liken it to marketing (Say whatever to sell something) ?

Talking in general terms for ease of math, a tube that is 1" in diameter is half the diameter of a 2" tube. The area of a 2" tube is much larger than twice that of a 1" tube.

It makes a big difference when we are talking about something this critical.

Larry


Wow, things were pretty quiet for a few days other than discussions about bed inclination so i thought that the questions were dying down, that i had answered all the questions. How i underestimate your thirst for understanding

IRs talk about narrowing in percentages. We can speak about the percentage of the diameter or we can speak about the percentage of the cross sectional area. Area is more accurate.

its been a long time since geometry, but area is πr2. No, i am not a nerd. Let me translate for those non-nerders the area of a circle is 3.14 times the radius times the radius(r squared)

so if the vein above the narrowing measures 12 mm and the narrowed area measures 6mm , then the percentage of narrowing is 3.14 x 3 x3 divided by 3.1 times 6 times six or about 28 divided by about 100 or about 72% narorowing. Some will speak about 6/12 or 50% narrowing of the diamter but cross sectional area is most important.

after all in said, actually be careful that your doctor does not define comparison to normal based upon the findings commonly seen in atherosclerosis where 70% narrowing is considered significant. Because of the low pressure changes in cross sectional diameter are exagerrated.
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Postby drsclafani » Thu Mar 25, 2010 10:27 pm

Is this a consistent benefit? Is there any new risk? Will this reduce recurrent stenosis?"

My one thought concerned the health of the lining of the veins. If the endothelial lining isn't strong and you put sharp little edges in it, could it weaken the vein? I'm not trained in the sciences so my apologies if this question is a foolish one. (P.S. I'm on your list as well.)


No question is a foolish one.... otherwise it would not be asked.

i did one case! you have got to be patient as one case is only a glimmer. We need more data to answer your question. otherwise it is just opinion.
my opinion is that the vein looked like flow was enhanced.

with regard to weakening the wall, that is absolutely true. The malformation of the vein is generally stiff and that stiffness prevents distension of the vein. the cutting balloon just makes it easier to dilate the vein...I will keep you all informed of this
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Postby drsclafani » Thu Mar 25, 2010 10:33 pm

I , but, as blueskies asked, ought we to be confident that any competent vascular surgeon, interventional radiologist, etc., would see bad valves, stenosis, etc., as something to be treated? There was the doctor in Australia who went in, and backed out without treatment.


would you trust a air traffic controller on his first day on the job?

i think that the procedure is the easy part. the hard part is determining what is abnormal. its not like a clown comes out and dances around with a placard that says " Hi, i am abnormal. please come treat me."

so the answer to your question is yes, it makes a difference. I am far better now than during my first case....sorry angel. Everyone should go to zamboni, but alas he is way too busy. most patients getting the procedure done in the US are pioneers. if you dont have the courage to take on that role, then wait it out.
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Postby drsclafani » Thu Mar 25, 2010 10:38 pm

What would your reaction be if you performed a venogram on an MS patient and the only problem you found was that one of the internal jugular veins had a 40-50% narrowing at one point, there was a moderate patchwork of small collaterals near the narrowing, plus a large collateral above the narrowing that connected to the nearest external jugular vein, but the internal jugular vein was still dynamic in the area of the narrowing (e.g., the vein expanded when dye was released nearby)? Would you consider a balloon angioplasty in that case? Would you consider any other options?


i would be skeptical about the degree of expansion of the vessel/ I would also doubt that the venogram was interpreted correctly. I would put an ivus in to see whether there was a something subtle and ultimately if i found nothing else, i would perform angioplasty. no sense not giving it a chance
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Postby drsclafani » Thu Mar 25, 2010 10:43 pm

Dr. Sclafani, I want to thank you and everyone for this great thread -- educational, eye- opening, and who could have guessed it could be so emotional and funny.

I think that somewhere in here you indicated that the venogram is a steep learning curve. By that, do you mean it's success is going to be dependent on the experience of the person doing it? I think what I'm asking is, if a person has a venogram to assess for CCSVI, how critical is it to go to someone who has already been working with this issue?


if you cannot laugh at yourself, you might as well take a sabbatical.

Of course it is better to work with an experienced IR. all two of them. it is very critical to work with someone of experience. However we are all pioneers and if you can have the courage to take a chance, then work with the "good doctors" to get through the learning curve. pay it forward
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Postby drsclafani » Thu Mar 25, 2010 10:46 pm

Hello Dr Sclafani,
I have a quick and simple question...
Since jugular vein drainage occurs in the prone position... does, or could, a persons 'sleep position' effect performance? Say you sleep on your stomach with your head twisted to the side?


jcakes
prone means lying on your stomach, supine means lying on your back. both should improve blood flow in the jugular vein in the normal patient
i cannot tell you how that would affect blood flow in a patient with MS
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Postby drsclafani » Thu Mar 25, 2010 10:49 pm

Why does this inclined bed stuff seem to show up in almost every thread, always with these 1000 word posts?


i would suggest that it means that someone feels very passionate about the topic
keep the focus but be compassionate of others who write here
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Postby drsclafani » Thu Mar 25, 2010 10:54 pm

I just gotta love a Doctor who uses a word like "amamentarium", with the confidence that the patient is not incapable of understanding (or at least, looking it up - such as I did).

I wonder, Dr. Sclafani, are these discoveries and innovations - such as you are making - disseminated in the IR, Venous Doctor, etc., community, or is that something that needs a peer-reviewed paper?

The Doc. who did my US today was remarking on anomalies in my valves, but he is not involved with treatment, and after Rici's catastrophic experience in having had a valve ablated, I might be a bit querulous with having my own valves trashed. In your view, ought one be cautious in messing with valves? Apparently, Dr. Von Schelling warned against it.
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Postby drsclafani » Thu Mar 25, 2010 11:02 pm

I just gotta love a Doctor who uses a word like "amamentarium", with the confidence that the patient is not incapable of understanding (or at least, looking it up - such as I did).

I wonder, Dr. Sclafani, are these discoveries and innovations - such as you are making - disseminated in the IR, Venous Doctor, etc., community, or is that something that needs a peer-reviewed paper?

The Doc. who did my US today was remarking on anomalies in my valves, but he is not involved with treatment, and after Rici's catastrophic experience in having had a valve ablated, I might be a bit querulous with having my own valves trashed. In your view, ought one be cautious in messing with valves? Apparently, Dr. Von Schelling warned against it.


there are many ways that doctors receive information
in the case of ccsvi is is so new that word of mouth and ad hoc phone advice, peer to peer discussions are really valuable. internet is helpful, not only for the data, but also for understanding of patient experience. That is why i searched until if found this site. you all have taught me a lot.
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Postby Hopeful10 » Thu Mar 25, 2010 11:06 pm

Dr. Sclafani,

Thank you for the quick response.
Last edited by Hopeful10 on Mon Apr 12, 2010 9:28 am, edited 3 times in total.
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Postby drsclafani » Thu Mar 25, 2010 11:08 pm

With the thought of genetics and the goal of MS prevention, if CCSVI is the cause of MS, and since twisted or stenosed veins are congential and therefore present in childhood, do you think a child of someone with MS could prevent developing the disease if CCSVI were detected and treated in childhood?


yes


however research in children is more difficult because the patient cannot advocate for themselves and thus research requirements are more stringent.

I have already begun the process of stimulating pediatricians and ophthalmogy into this topic
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Postby mags4short » Fri Mar 26, 2010 3:30 am

Hello Drsclafani,

I am due to go to Poland in May and was wondering about stents as I have an allergy to metal. I emailed Euromedics to find out what they were made from and they replied saying that they were made from Cobalt.

I think that I am allergic to Nickel but am not 100% sure, can you advise me as to what to be asking? Maybe I need a blood test to see what it is exactly that I am allergic to, if so I can ask my GP?

I would still be happy to go for ballooning, but would prefer the stents as they seem to be lasting longer, I don't want to go and then have to return in a few months.

This is all pure conjecture as I don't even know if I have stenosis, but I get the feeling that I have. I just like to know what my options are.

Thanks Mags
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