DrSclafani answers some questions

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

Postby drsclafani » Sat May 29, 2010 7:28 pm

Trish317 wrote:
drsclafani wrote:
MS_mama wrote:thank you for your reply on the anticoagulants Dr. S. You mentioned long-term effects of coumadin--does it still cause side effects even after it is discontinued? Are the injections you mentioned heparin? This is what Dr. Z mentioned in his Charing Cross paper so I was curious as to how others' protocols are.

If that is not part of the protocol at Dr. Siskin's practice and I request it, would it be adequate to follow up with a GP as regards the anticoagulants or with an IR/Vascular specialist?


most side effects of coumadin are the result of the treatment. Generally within a week or so, as the drug leaves your body, your risk of side effects goes down significantly.

Yes, i use a heparin like medication for 2-3 weeks. it has a higher safety profile than heparin

There is no definite proof one way or the other that anticoagulation is necessary (even though i use it.:wink: ) what you are saying is that dr siskin doesnt think that the risk is worth the benefit.

we are in a philosophical issue here. That is, does a patient have the right to change a doctor's plans, if that patient knew before that the doctors plans were not to their liking or belief.

Frankly, if a patient did not want to follow my treatment plan, I would prefer to refer the patient to someone who felt that the alternative was appropriate. It puts the physician in a hole, when his or her plan is disrupted only partially followed. Certainly you should be up front with the doctor before you are treated by him, not after.

ONe of my patients decided to stop coumadin on her own. i believe it might have caused her to thrombose her vein later on (i have no proof)

So if you want anticoagulation and dr siskin doesnt want to do it, perhaps you should find a doctor whose treatment plan is more in alignment with your ideas.


This is probably a difficult question to give a direct yes or no answer to but I'll pose it anyway. If a patient had been prescribed Coumadin, in the past, for a blood clot behind the knee, would that be an indication that it, or another anti-coagulant, should be prescribed post-CCSVI procedure?


no
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Postby Trish317 » Sat May 29, 2010 8:19 pm

drsclafani wrote:
Trish317 wrote:
drsclafani wrote:
MS_mama wrote:thank you for your reply on the anticoagulants Dr. S. You mentioned long-term effects of coumadin--does it still cause side effects even after it is discontinued? Are the injections you mentioned heparin? This is what Dr. Z mentioned in his Charing Cross paper so I was curious as to how others' protocols are.

If that is not part of the protocol at Dr. Siskin's practice and I request it, would it be adequate to follow up with a GP as regards the anticoagulants or with an IR/Vascular specialist?


most side effects of coumadin are the result of the treatment. Generally within a week or so, as the drug leaves your body, your risk of side effects goes down significantly.

Yes, i use a heparin like medication for 2-3 weeks. it has a higher safety profile than heparin

There is no definite proof one way or the other that anticoagulation is necessary (even though i use it.:wink: ) what you are saying is that dr siskin doesnt think that the risk is worth the benefit.

we are in a philosophical issue here. That is, does a patient have the right to change a doctor's plans, if that patient knew before that the doctors plans were not to their liking or belief.

Frankly, if a patient did not want to follow my treatment plan, I would prefer to refer the patient to someone who felt that the alternative was appropriate. It puts the physician in a hole, when his or her plan is disrupted only partially followed. Certainly you should be up front with the doctor before you are treated by him, not after.

ONe of my patients decided to stop coumadin on her own. i believe it might have caused her to thrombose her vein later on (i have no proof)

So if you want anticoagulation and dr siskin doesnt want to do it, perhaps you should find a doctor whose treatment plan is more in alignment with your ideas.


This is probably a difficult question to give a direct yes or no answer to but I'll pose it anyway. If a patient had been prescribed Coumadin, in the past, for a blood clot behind the knee, would that be an indication that it, or another anti-coagulant, should be prescribed post-CCSVI procedure?


no


Thank you, Dr. S!
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patient statistics

Postby Rosegirl » Sun May 30, 2010 5:04 am

Hi, Dr. S.,

How can we find data on patients post-procedure? There are general comments by Dr. Zamboni and others that CCSVI should be studied or that it has benefit, but, surely, they have more quantifiable data that they are sharing with their peers. I've found a couple of short over-view publications that say things like "every patient showed some improvement", but there was no additional data that gave a clue as to what changed. Was it cog fog, gait/balance, improvement over time, etc.?

Other than a few folks who have shared their own experience, there doesn't seem to be much in terms of an organized data base (i.e., by type of MS, symptoms pre- and post-, location of abnormality and potential relationship to symptoms, etc., etc.)

I'm guessing at least 400 people have been treated around the world. Where do YOU look for this kind of information?

Gratefully, Rosegirl
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Postby drsclafani » Sun May 30, 2010 6:24 am

LR1234 wrote:Factors Increasing Central Venous Pressure

Primarily a change in compliance (C) or volume (V)
Decreased cardiac output V
Increased blood volume V
Venous constriction C
Changing from standing to supine body posture V
Arterial dilation V
Forced expiration (e.g., Valsalva) C
Muscle contraction (abdominal and limb) V, C

Hi Dr Sclafani, I found this table on a website as I am still interested in the issue of blood flow.
Its been mentioned that MSers may not have enough blood flowing through the veins which could create the narrowing we see in some cases.
It seems that even if this narrowing is fixed that the blood still doesn't flow.
In my last question to you I asked if there was anything we could do to increase venous pressure to create more of a flow.

Now I am stuck with the idea that on one hand we are looking to decrease venous pressure but on the other hand we need to increase it for better blood flow.
(maybe once the valves and blockages are sorted maybe we need to increase pressure)

What are your thoughts on this? Could we do anything from the above list to see if they would improve symptoms. (Maybe pregnancy helps some MSers because the blood flow is increased not just because the immune system is supressed)



its not about pressure. its about flow

you do not need much pressure to drain the brain of blood. if there were only one way for the blood to get out of the brain and it were obstructed it would be incompatible with life, but the brain drains by two different routes and this allows flow even when there is obstruction.

The blood is drained by the thoracic pump. When you breath, you make negative pressure in the chest so that the little pressure you have in the veins is ordinarily sufficient . in ccsvi, the resistance allows blood to go by a different route back to the heart and that leads to problems

does that help you understand this?
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Postby drsclafani » Sun May 30, 2010 6:35 am

HappyPoet wrote:Hi Dr S,

If you have the time, I have some questions based on my test reports (shown below):

1) What might "reflects the jugular arterial flow" in the US report mean?
2) What might "Distortion of distal jugular vein due to the presence of leaflet valves" in the MRv-neck report mean?
3) How does my R-IJV flow velocity of 175.0 compare to the average flow velocities of MSers you've seen? How "paradoxical" is this velocity?
4) Is "A dural sinus is more like a built-in drainage pipe than like a flexible vein" a somewhat valid statement?

US: "... Right jugular vein Upright velocity is abnormal measuring 175.0 cm/sec. which probably reflects the jugular arterial flow." (R-supine = 31.9); (L-IJV = 60.2 supine, 56.7 upright).

MRv-head: "Abnormal examination with absent proximal segment left transverse sinus and markedly attenuated remainder of left transverse sinus and sphenoid sinus. In retrospect, the vertical Doppler recordings in the right jugular vein may represent a paradoxical high reading."

MRv-neck: "... Distortion of distal jugular veins due to the presence of leaflet valves."

If I understand correctly, my inoperable intracranial dural sinus malformations might, by way of the vertebral veins, be a contributing cause of my longitudinally-extensive thoracic lesion per Dr. Schelling's paper, "The Ways to Lesion Understanding." Considering the state of my dural sinuses and neck veins, I'm almost afraid to learn about my azygous vein in an upcoming catheter venogram.

Thank you very much for your very valuable time!

Wishing you a happy and safe holiday weekend :)
~HappyPoet
.


this is a really difficult report to understand. i do not get the sense that we have standarization of terminology yet.

for example,
jugular arterial flow???? the velocity is high because of an obstruction, and as the flow goes past the narrowing the velocity rises. I think of it as flow down a rapids

distortion due to valve leaflets......dont like that descriptor....valves are present in 85% of jugular veins. does he mean the valve is abnormally distorted. I am impressed to see a valve on MRv.

also the use of proximal and distal is hard to interpret. People who are brain oriented see the vein coming out of the vein as proximal and the vein going into the chest as distal.....people who are heart oriented think of the vein closer to the chest as central and away from the heart as peripheral
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Re: Dr. Sclafani

Postby drsclafani » Sun May 30, 2010 6:45 am

CureIous wrote:
drsclafani wrote:
on Doppler and ECU, one sees hemodynamic evidence of abnormal flow and anatomical abnormalities of the jugular vein

on MRvenography one sees evidence of collapse of veins, collaterals and some real stenoses

MRvenography is NOT the same as what most would call venography or, to be a purist, i would call catheter venography

catheter venography is the Gold Standard, but i would argue that all have their value as does

intravascular ultrasound (IVUS)

you all know I am going to try to prove that catheter venography plus IVUS should be the gold standard.


None of these four tests listed above is particularly helpful in assessing the azygous vein which drains the spinal cord. Only catheter venography and IVUS illustrate problems with that vein at the current state of the art.


Greetings Dr. Sclafani. This was my impression too, thank you for codifying it. I recently intimated in my follow up thread the discovery of an abnormality that was discovered via IVUS, after having 4 stents put in that took care of the stenosed areas, after my 9 month follow up, the collaterals were shown to be filling again, the stenosed area near C1 was just too tight to deal with at that time, however after the membranous flap was discovered, and angioplastied open, at the collarbone level, it then immediately reduced the upper pressure gradient (at C1) from 4 mmHg to 1, and the collaterals once again vanished.


Leaving external UT out of it for the time being of course, since that's essentially out of reach for the vast majority of MS patients. Least any UT worth using on us.

Good day sir, and sorry if this has been covered a hundred times on here already.

Mark


Mark, please tell me what UT means. the acronym escapes me.

[/quote]I cannot imagine any argument whatsoever for NOT having IVUS dovetailed on to venography as the undisupted gold standard. Course I'm at this time a bit partial to it's effectiveness, but thankful that Dr. Dake decided to use it, and was keen enough to discover that pathology and correct it. This is where I wonder if so many false negatives on MRV's, heck even venographies, could be missing these valve related issues.
[/quote]

the only argument one could offer is the expense of the equipment and the expense of the ultrasound catheter which costs about $600-700 each. That is why i want more data before i sing its praises. But if it picks up additiona hidden lesions while avoiding venoplasty of collapses veins, it would be worth it.
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Re: TODAY'S DISCOVERY

Postby drsclafani » Sun May 30, 2010 7:35 am

drbart wrote:
drsclafani wrote: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.


a friend had his second angioplasty thursday. his stenosis was a very tight thing (dunno the label) high enough into his skull that he had trouble finding an IR who would work on it.

first time, the balloon was inflated for 3 min. post-op, he felt significant improvement, for a few days, then back to square 0. now is a month later, and SFSG.

initial reports are that it wasn't quite like buttah, or even i-can't-believe-it's-not-buttah. they wound up using "the wire", which i gather is a pre-balloon thing that sounds even creepier than the cutting balloon animation i saw elsewhere.

<shortened url>

can you comment? are you still a CB fan?


i am but i havent used it in two months :cry:

i am not sure i would have used a cutting balloon that high. There are some important things up there.
into the skull? i have my own trepidation doing that. Thankfully i havent had the opportunity to meet that critter yet.

Thrombosis of the dural sinuses is pretty bad, since it prevents flow much higher, before the rich collaterals are available. Worse still is tear of the dural sinus as it could lead to life threatening hemorrhage.

I will leave that to my neurointerventional colleague, sundeep mangla. He is used to that area of the vasculature.
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Re: A question from Spain

Postby drsclafani » Sun May 30, 2010 7:38 am

jfgonmen wrote:
drsclafani wrote:
jfgonmen wrote:Dear Dr. Sclafani.
My wife has MS for 20 years ago. She is 37 right now. She has SP MS two years ago and she is rapidly decline and worsering.

She was made some test to see if she has CCSVI ( Eco-doppler, flebography and scan ). We was told that she had asimmetrical yugulars. The left yugular has 12 milimiter and the rigth has 5.5 milimiter.
The doctor was surprise because it happen along the both yugular since top or beggining in cranial hole till the end of the neck. Even with the yugular cranial holes happens the same, the right cranial hole has a size that is less than a half than left one size.

My questions are:

Has it something to do with CCSVI?

sounds like it to me. Narrowing of the jugulars occurs because there is little blood flow through the vein. This is one of the important observations in ccsvi.
Would it have any influency in MS?
Could it be treated some way?


The treatment of CCSVI often improves the patient's condition. This is done by stretching the vein with a balloon. Thank you for your question.

And your english writing is pretty good!


Thank you very much for your answer Dr. You're very kind.

But I would like to ask you, How can the yugular cranial hole that has little size be stretching ?

When the blood flow from internal venus to the neck ( yugular ) always will find the little yugular cranial hole that don't allow the rigth external flow. How can it be solved?

Thanks again.


oh, I see your question. You are quite right. one cannot dilate the cranial hole, called the jugular foramen. But i believe that the cause of this problem is likely to be obstruction of the outflow of the neck near the chest, and that the narrowing of the jugular at the foramen is because of poor blood flow

first you must fine the central vein problem near the chest and treat it. Then you can see whether more flow will enlarge the rest of the yugular vein :wink:
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Re: TODAY'S DISCOVERY

Postby drsclafani » Sun May 30, 2010 7:43 am

Cece wrote:
drbart wrote:a friend had his second angioplasty thursday. his stenosis was a very tight thing (dunno the label) high enough into his skull that he had trouble finding an IR who would work on it.

CUREious and I were just talking/posting about this here late last night...those stenoses that are high up need to be looked at with IVUS to see if they expand under valsalva conditions (thus making them not a true stenosis and no need to treat) or if they stay tight under valsalva condition, making them necessary to treat.

As I understand it, a malformed valve down by the juncture of the jugular and subclavian veins (?) can cause reflux to go up a bit and then out through a network of collaterals, causing the higher-up area to narrow alarmingly due to the low blood pressure and low inflow caused by the low outflow caused by the lower down malformed valve. If this is what was happening in your friend's case, it was not the cutting balloon that was in error, but the location where it was being used. Lower down valves & membranes can get missed when the catheter lifts them out of the way when the venogram is being performed; I think this is sometimes suspicious/suspected when flow issues show up on a Doppler Ultrasound but not on the venogram itself.

We need to get Dr. Sclafani off the sideline and performing liberations, particularly on me :), so that he can publish this, so that there is a paper to refer to when this question comes up, so that all doctors can do this in a standardized best-way, which still needs to be learnt, so that every MSer in the world (not just the "white world") can be treated in a gold-standard fashion. Deep breath.


cece. lets not make this a racial issue too. Seems to me that all MSers are in the same boat

we are still in the age of discovery, remember
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Postby mshusband » Sun May 30, 2010 7:46 am

Dr. Sclafani ... a new question if I may that nobody has broached yet.

COULD acne be a sign of CCSVI? It happens along the lower jaw just below the mouth only and then out to the sides before stopping at the ear.

It isn't "normal" acne though (not white nor blackheads nor puss fulled at all) but what she describes as painful blood filled lumps just below the skin that never really "pop".

I'm just wondering if it's collateral veins trying to move bloodflow from obstructed jugulars ...


If you say no and tell me I'm crazy that's ok too ... just wondering if it was possible.
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Re: A question from Spain

Postby drsclafani » Sun May 30, 2010 7:46 am

Zeureka wrote:
drsclafani wrote: Narrowing of the jugulars occurs because there is little blood flow through the vein. This is one of the important observations in ccsvi

Understand right from this that an overall narrower jugular is not necessarily congenital then, but that for example a pathologic valve causing blood flow blockage can cause the narrowing of the jugular with time?

If the pathologic valve blockage is removed by balloon angioplasty will the jugular then again increase with time in diameter?


zeureka

YES! THAT IS THE IDEA.

Dr sinan is finding this so after angioplasty. He does the dilation, then goes to the other side and does treatment there. THEN he goes back to the first side and does the followup venogram and sees the upper vein dilating back to normal!!!! Dr. Z, Dr Simka and others have the same experience.
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Re: patient statistics

Postby drsclafani » Sun May 30, 2010 7:52 am

Rosegirl wrote:Hi, Dr. S.,

How can we find data on patients post-procedure? There are general comments by Dr. Zamboni and others that CCSVI should be studied or that it has benefit, but, surely, they have more quantifiable data that they are sharing with their peers. I've found a couple of short over-view publications that say things like "every patient showed some improvement", but there was no additional data that gave a clue as to what changed. Was it cog fog, gait/balance, improvement over time, etc.?

Other than a few folks who have shared their own experience, there doesn't seem to be much in terms of an organized data base (i.e., by type of MS, symptoms pre- and post-, location of abnormality and potential relationship to symptoms, etc., etc.)

I'm guessing at least 400 people have been treated around the world. Where do YOU look for this kind of information?

Gratefully, Rosegirl


Rosegirl
one has to look at this in perspective. Dr. Zamboni's paper was published in January 2010. Thus the data had to spread. Since it was in a vascular surgery journal, the IRs would not have been reading it. Many IRs (who do most of the venous angioplasty) had to be informed by patients. Then had to do their due dililgence, then had to seek out expert advice (not much to find), etc etc etc

look at me
found out about this in mid october
did my first patient end of december
did two cases a week at the beginning, just read to get moving,
then got stopped in early april
now waiting to restart

so, no one has irB approval yet. thus no one can publish data (rules of engagement by journals)
thus there IS NO PUBLISHED DATA save the ZAmboni experience

we are in an age of discovery, with mini-ages of resistance, obstruction, confusion and error

as i once said "patience, my patients"
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Postby drsclafani » Sun May 30, 2010 7:55 am

mshusband wrote:Dr. Sclafani ... a new question if I may that nobody has broached yet.

COULD acne be a sign of CCSVI? It happens along the lower jaw just below the mouth only and then out to the sides before stopping at the ear.

It isn't "normal" acne though (not white nor blackheads nor puss fulled at all) but what she describes as painful blood filled lumps just below the skin that never really "pop".

I'm just wondering if it's collateral veins trying to move bloodflow from obstructed jugulars ...


If you say no and tell me I'm crazy that's ok too ... just wondering if it was possible.


I WOULD NOT GO POPPING THOSE BAD BOYS!

Without seeing it, cant be sure, but venous malformations come to mind.
could be obstructed jugulars but i think not

if you dare, post a picture,
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Re: TODAY'S DISCOVERY

Postby drbart » Sun May 30, 2010 9:01 am

drsclafani wrote:
drbart wrote:stenosis was a very tight thing (dunno the label) high enough into his skull that he had trouble finding an IR who would work on it.


am not sure i would have used a cutting balloon that high. There are some important things up there.
into the skull? i have my own trepidation doing that. Thankfully i havent had the opportunity to meet that critter yet.

Thrombosis of the dural sinuses is pretty bad, since it prevents flow much higher, before the rich collaterals are available.


it must not have been *that* high, as the account of the procedure described the collaterals as collapsing immediately. as in they were available.
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Postby Nunzio » Sun May 30, 2010 9:27 am

Nunzio wrote:
Billmeik wrote:
Discovery DSALUD. Número 21. Number 21. Octubre de 2000 . October 2000.
Solution for some degenerative central nervous system.


Noda - is a perfect example. They correspond to the English expression Cerebellar Thoracic Outlet Syndrome and refers to pathological compression of the neurovascular structures that sometimes occur at the base of the neck. I will try to explain to the reader the simplest way possible: on both sides of the neck are two regions called the scalene triangle that is bounded by the scalenus anterior, scalenus medius and the rib (see picture). And in between are the subclavian artery, the brachial plexus and the vertebral arteries and internal mammary. Well, sometimes there is a neurovascular compression of these structures causing a malfunction of the nervous structures.

So much that most doctors know. But what these doctors do not seem to know and what Fernandez Noda discovered was that this compression also affects the vertebral artery causing a decreased blood flow to the brain and hindering venous return in the cranial area, causing many of the degenerative processes of the central nervous system, Parkinson's, multiple sclerosis, cerebellar ataxia, epilepsy and some cases of Alzheimer's, among others.

I took the liberty of shortening the quote and correcting the translation on the bottom half.
The point I want to make is that, as you noticed, only arteries are mentioned; the reason is that few years ago nobody paid attention to the veins. But, as you know, in our body any artery is accompanied by a vein. The other point is that if you have external pressure, as the one applied by an hypertrophic muscle, the veins are going to be affected much more then the arteries due to their lower pressure and higher flexibility.
So my contention is that Dr. Noda, with his surgery, was improving the venous return, specially from the vertebral vein, and that is the real reason MS patients improved so much after his surgery.

Dear Dr. Sclafani,
I am posting this because I think it is the missing link.
What I mean is that CCSVI primarily addresses problem with the Internal Jugular Vein and Azygous Vein while CTOS/CTNVS relates mostly to Vertebral Artery/Vein problem.
Dr. Noda operated on more then a thousand patients with impressive results even before CCSVI was in our vocabulary.
I am proposing the two conditions are complementary and this will improve even further our understanding of blood flow impairment related to MS.
This link has an English translation of some of his work: http://health.groups.yahoo.com/group/healingparkinsons/message/870
A special thank to you for going through what we trow at you which require a significant amount of time and dedication on your part.
I am sure everybody here is aware of this and we all are very appreciative of your efforts.
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