DrSclafani answers some questions

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

Postby Zeureka » Thu Sep 09, 2010 6:30 am

A well-deserved fantastic buzz :D !!
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Postby Cece » Mon Sep 13, 2010 7:40 pm

HappyPoet, that is beautiful, you outdid yourself! My congrats on the milestone as well....


Nihao, welcome back, how was your trip? You have missed exciting things....
* Dr. Hubbard found & treated CCSVI in a Parkinson's patient! What does it mean, we do not know.
* The SIRS find-a-doctor website has added 'Endovascular treatment/CCSVI in MS' to its searchable list of areas of expertise.
Last edited by Cece on Wed Sep 15, 2010 6:57 pm, edited 2 times in total.
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Postby drbart » Mon Sep 13, 2010 9:18 pm

Cece wrote:*bump*

Nihao, welcome back, how was your trip? You have missed exciting things....
* Dr. Hubbard found & treated CCSVI in a Parkinson's patient! What does it mean, we do not know.
* The SIRS find-a-doctor website has added 'Endovascular treatment/CCSVI in MS' to its searchable list of areas of expertise.

They haven't treated him yet.
Last edited by drbart on Mon Sep 13, 2010 10:09 pm, edited 1 time in total.
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Postby drsclafani » Mon Sep 13, 2010 9:41 pm

vivavie wrote:
drsclafani wrote:
vivavie wrote:Hello DrS, I finally got my stent unblock (candy wrap stenosis) AND:
70% left jug stenosis: balloon twice 8/10X40mm
50% right jug: balloon 3X (8/10/12X40 mm)
both in the area of prior radiation+ curietherapy and neck dissection from previous tongue cancer.

can you tell us whether your MS symptoms started before or after the radical neck surgery. If you and the group may recall, one of the arguments brought up to refute ccsvi is that patients with neck cancers have both their jugular veins tied off during surgery and they do not develop any symptoms. However it is known that sometimes these patients develop symptoms such as headaches, cog fog, balance problems and fatigue too.

Please let us know

He ALSO found a kink/irregularity in my Azygos 8X40mm (not checked in Poland)
It cracked - it poped - it hurt. (He also check MT and lombar =fine)

I was this doc 1st, he was pretty thorough (2 1/2hr) and he felt he did an aggressive job. Nice, competent, entousiast IR.

I was sure this time I was Fully Liberated but NO! Nothing:Pain -fatigue- brain fog are the same. headache increase.

What eludes me is my stent is now clear, how come I don't have the previous improvements I had for 6 weeks (bladder, saliva, bowel, no headache, sleep)? During the 1st procedure they only found a faulty valva.

of course, i havent seen your pictures so it is hard to say much. but the diameter of the balloons used may have been too small. I cannot tell without knowing the measurements of your veins. While Dr sinan is moving toward 18 and 20 mm balloons, your doctor seems to have stayed on the side of smaller balloons, perhaps for safety.
What should be my next step? Is it possible that the veins did not hold their new shape? How about balloon size? lenght? Would it be a good time to use cutting balloon because those veins must be hardened by radiation?
I am not ready to give up yet! help!
Thank you

it is really difficult to answer you without seeing the picture. if your veins are narrowed by radiation, it is likely that stents will be needed. however, remember, i am just a bystander hearing about the work of another plumber

Tongue cancer was 5 years before ms. I was 30yo. Normally it is 60+ yo man who have smoke and DRINK all their life. That is probably why they never face CCVSI as complication for playing in their neck....
Yes, the Dr said my left jug was pretty small 6mm
How about stent stenosis while on Plavix?
Why did I not get my previous improvements back??
You already have all my CD from Poland and I shipped you this one yesterday with the details. Even the Doppler in July when I was told my veins were 100% NORMAL.

Did you wrestle with the bears or the Indians to be so tired after vacation?!?
I hope you enjoy your rice!

i was really pushing the envelope before i went to the adirondacks and exhaustion was closer to the fact. The time in China was really relaxing. standing on my head does that to me.

i apologize if i did not review your cds. it is very difficult to review them and to put the real person and their CDs with the THISISMS usernames. Very difficult to keep it all straight.

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Postby drsclafani » Mon Sep 13, 2010 9:52 pm

girlgeek33 wrote:Dr. S, can you talk about what issues can arise from a balloon breaking during angioplasty?
Do they design them to factor in this possibility?

Yes, balloons are designed to have a nominal pressure of full inflation and a burst pressure. many physicians, including myself, use a pressure gauge to check the pressure and assure we do not go much beyond the burst pressure

Does this happen often? Rarely?


What should be watched for after a balloon has broken in a patient during angioplasty?

as long as the pressure is contained within the balloon things are pretty safe.when the balloon bursts, the pressure is longer contained and can cause a jet of fluid at high pressure. This is usually not a serious problem in a vein but can cause tear of the tissue. Also if a balloon ruptures it may become LESS attached to the rest of the catheter and there is a risk of some of the balloon coming off the catheter. this is a more serious problem in arteries than in veins.

however even when the pressure is contained within the balloon, the expansion may exceed the ability of the tissue to stretch. in such circumstances it is possible to have a (usually) small tear of the scar tissue. this rarely is a source of serious bleeding, although it might lead to clot at the tear that leads to blockage of the vein

And what precautions can be taken to avoid any potential issues that a balloon break can cause?

avoid exceeding burst pressures
using cutting balloons
use only high quality reliable balloon catheters

Wow! Don't know if Ive ever had so many questions at once! ;)

Rest now, enjoy being upside down! Look forward to hearing news from the trip...
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Postby drsclafani » Mon Sep 13, 2010 10:14 pm

Athena wrote:Dr. Sclafani,

1. How high up in the neck/ head /brain venous system can be assessed with US? with a real time venography?[Generally one can do ultrasound and doppler from the clavicle up to the mandible. so the upper quarter and the lower 1/6th are not well seen. but we are not looking at anatomy except in the lower vein near the clavicle. We are actually lookking at direction of flow. it is not uncommon to look at three spots on each vein on ultrasound in sitting and upright positions.

venography is an anatomical study that can see the dural sinuses in the skuil down to the junction of the jugular vein with the subclavian vein

2. During venography, can one see reflux into the deep cerebral veins when dye is released high up in the internal jugular veins?

no one does not see the deep cerebral veins

3. Could problems high up in the internal jugulars (i.e. my flat morphology of my right internal jugular at the level of C1) cause the reflux in the deep cerebral veins or is my problem more central in the brain??

of course, i can only generalize. i believe the flattening is relatively normal at the skull base in many patients. i do not think that reflux into the deep cerebral veins is caused by a problem in the brain

4. What are your thoughts on treating with venoplasty high up in the jugular vein? How high up can the venoplasty balloon reach? What are the safely issues?

i do not want to dilate the high jugular vein before exploring the area of the valves. i believe that most high jugular narrowing is resolved by treating the low jugular problems.

5. I have heard that some interventional radiologists have treated high up stenoses of the internal jugulars by ballooning lower in a safer part of the internal jugular, which appears to fix the problem higher up. Can you explain why this can improves blood flow in a narrowing above the part that was venoplastied? Could do so in layperson's terms as well as with fluid dynamics terms?

we havent discussed this in a while......

veins can distend greatly depending upon the amount of flow in them. if there is a low obstruction, the venous blood will seek an easier route of drainage, through collateral veins or through the vertebral veins. thus the jugular vein has little flow and collapses. in fact, while i sit here typing this email, my brains veins are draining through my vertebral vein and it is very likely that my upper jugular vein (as well as the rest of it) are collapsed. I am pleased that someone is not doing venoplasty on me at this minute!

6. Do you believe that I should be assessed with a venogram?[quote/]

athena, there are many components that go into making a recommendation for a patient. the history of disease, the physical exam, the MRI, the ultrasound all play a role in advising a patient. it would be not be a wise decision for me to give advice to a particular patient.

however i believe that venography can identify things that are not seen on ultrasound. however it is slightly invasive and therefore ultrasound is the most cost effective method of screening. Dr. Zamboni showed that having more than one of the five ultrasound findings does not occur in a normal patient and thus would warrant venography.

Please, all your thoughts are welcomed. I appreciate you replying to this message.

Kindest regards,

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Postby drsclafani » Mon Sep 13, 2010 10:18 pm

Cece wrote:
drsclafani wrote:i wanted to catch up here as much as possible because once i am in china everything will be upside down.

Love it....

It must be easy to find CCSVI there, you just look for the people with purple faces....

Have a great vacation#2.

on the more serious side, i was told that there are many patients in china with MS, although the rate per 100,000 is much lower than in canada, western europe and the northern US. Of course, since there are a billion more people in china than in the US, that does add up to a lot of patients.

but my IR colleagues were quite unfamiliar with MS....not that dissimilar to the experience in the US only one year ago
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Postby drsclafani » Mon Sep 13, 2010 10:19 pm

Johnson wrote:
drsclafani wrote:
kaboodah wrote:Dr. S,

Would blocked or very narrowed veins be the potential cause of high blood pressure? If so, how would someone have normal blood pressure but also have substantially blocked veins? Thanks!


i do not think that that narrowed veins results in hypertension

But could hypertension result in narrowing of veins? I am thinking more specifically about angiotensin. It is interesting that Putnam tried blood thinners. Of course there are different varieties of blood thinners, but what about angiotensin receptor inhibition? Could some of the benefits of the procedure be related to the blood thinners afterward; be it Fraxiparine, coumadin, what-not? I think that Fraxiparine is anti-thrombotic, which would indicate anti-fibrin? And back to collagen abnormalities in "MS".

I'm lost in thought in a deep fog.

you remind me of me two weeks ago
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Postby ConstableComfortable » Tue Sep 14, 2010 12:29 am

Dr S.

I have been giving myself a neck massage in the mornings (my MS symptoms are generally worse on waking, I guess this ties in with the jugulars kicking in when supine). I do it for about 10-15mins and use just downward strokes. The first time I did this I have powerful sensations in my lower legs and feet and afterward my walking was more fluid and could 'feel' the carpet with my toes (a sensation I hadn't realised I'd lost).

Is there any risk with doing this? (I do take aspirin as a precaution).

If there was a stenosis in my jugulars could this help correct things? (I realise if there are valve issues it probably wouldn't correct that).

When/how do the jugular veins kick in? Does my whole body have to be supine or are they working if I just tip my head back 90degrees while standing?

Would it be better to do the massage in a standing or supine position?

Good to have you back.

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Old question

Postby NHE » Tue Sep 14, 2010 3:46 am

Hi Dr. Sclafani,
Welcome back :!: I had a question from a little while ago on which I would greatly appreciate your thoughts.

Thanks, NHE

NHE wrote:Here's a question... I have read that the thoracic pump effect operates on inhalation to create negative pressure in the thoracic cavity to help draw blood down through the cerebrospinal veins and vena cava. With this knowledge, I have tried a little experiment. When laying down, I will take several deep diaphragmatic breaths in an attempt to maximize my blood return through my jugular veins. I should state that I have not been tested yet for CCSVI. The result of the experimental breathing so far is that I typically feel a pressure in my ears and in my neck (the latter is hard to describe but it is similar to what I get when I walk a couple of blocks). Can you offer an explanation for this result? Is it a sign that I might have a stenosis of some sort or is it a normal effect? If someone has cerebrospinal stenosis, would this type of deliberate breathing create more reflux and ultimately have a negative impact?
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Postby NHE » Tue Sep 14, 2010 3:52 am

Hi Dr. Sclafani,
I've been looking into nattokinase and I ran across the published research below. Do you think that there might some benefit to using nattokinase in the treatment of CCSVI in MS patients?

Thanks, NHE

Effect of nattokinase on restenosis after percutaneous transluminal angioplasty of the abdominal artery in rabbits
Nan Fang Yi Ke Da Xue Xue Bao. 2008 Aug;28(9):1538-41.
    OBJECTIVE: To investigate the effect of nattokinase on intimal hyperplasia in rabbit abdominal artery after balloon injury and explore a novel strategy for the preventing restenosis after percutaneous transluminal angioplasty.

    METHODS: Fifty-six New Zealand rabbits were randomly divided into 7 groups, namely the solvent control group, model group, natto extract lavage group, refined nattokinse lavage group, intravenous refined nattokinse injection group, clopidogrel group and clopidogrel-aspirin group. Balloon injury was induced by inserting the catheter through the femoral artery into the thoracic aorta of the rabbits. The platelet counts were notad and platelet aggregation was observed, and the abdominal artery was taken for pathological analysis. The expressions of MMP-2 and -9 in the abdominal artery were detected immunohistochemically.

    RESULTS: There was no significant difference in the platelet counts, platelet aggregation rate or MMP-2 and -9 expression between the model group and the nattokinse-treated groups (P>0.05). The stenosis index in each nattokinse-treated group was significantly greater and the neointimal proliferation index smaller than that of the model group (P<0.01 or 0.05).

    CONCLUSION: Nattokinse can inhibit restenosis of rabbit abdominal artery after percutaneous transluminal angioplasty, which is independent of its actions on the platelet or MMP-2 and -9 expressions.
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Postby saks » Tue Sep 14, 2010 11:04 am

Dear Dr. Sclafani,
It's great to have you, Dr. Sclafani, volunteering your time. Thank you also for being willing to help us with MS get liberated.

I'd like to get the procedure myself. I have a faulty valve on top of everything!

What stents are used in our USA? Do they have a name?

Again, thanks for everything.
Synthia :)
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Postby girlgeek33 » Tue Sep 14, 2010 11:30 am

Can you tell me how common it is to get scar tissue around or near the incision site? When there, what can be done about it? When is this serious? Can this create issues for the blood flow, especially since that's what trying to be corrected?

Thanks! Welcome back! Hope it was a good trip!
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Postby NZer1 » Tue Sep 14, 2010 2:03 pm

Welcome Dr. have to say I was a bit worried you seemed to be gone for some time, thought someone may have hijacked you and put you in a sweat shop treating PwMS 24/7. :lol:
One of my group have just had tests done by the Auckland Radiology Group at Auckland Hospital NZ. We supplied the videos and protocols from Zamboni and Haacke for the ultrasound and MRV. They said they would do the testing no problems.
I quote my friends initial comments afterwards "They read and are now familiar with Zamboni's work. They are very open to learning all they can - but I was their first patient.
He said that they didn't have a doppler probe - which is why they wanted to do the MRV. But didn't think the contrast agent was useful because everything looked so good."
"So, I wonder why there wasn't even a slight stenosis?"
" Yes - that was always a risk - them not knowing what they were doing. But at least there isn't some very obvious problem with them. And I have all the images and can maybe send them to someone to have a look at.
Thanks everyone for thinking about me today! :)"
There are now several PwMS who have had treatment in NZ that we know of, 2 in NZ and 1 in Australia (Prof T). One person Arne (Muse) has had good improvement since the treatment and the other two have had little benefit. All of these examples are from IR's who are not that well versed in treatment and the testing was substandard IMO.
The example above of the testing where the experience and equipment is below average, naturally it :evil: me. It seems that these people seem to think that they know best even though they know nothing.
We have one PwMS going back for a discussion today with the IR and she has the many web links to the Symposium, Zamboni protocols and Simkas works, etc to give to the IR so he can give an 'educated guess' after looking through the evidence provided by a PwMS about the work required!!!!!!!! Then talk again with a opinion.
In NZ we are way behind the eight ball, although Radiologists make all the right noises before starting they BS us at completion like a Neuro would.
Could you please have a look at the CD's and help with an opinion. Please PM me. Do you have any tips on how to deal with this situation? 8O
The last lady is 8 months ago dx and had a severe first relapse, and naturally I and others are trying to help because of the risk of further damage. The others in our group are long temp PwMS SPMSer's and myself a PPMS so we are still wanting help but realise we will likely have to have repeated treatment, which is too expensive as private patients.
My Facebook page is CCSVI in NZ.
Thanks Dr. regards Nigel
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Postby NZer1 » Tue Sep 14, 2010 2:29 pm

Me again or still as the case may be.
I have recently been following the work of Dr. Flanagan aka the uprightdoctor. Dr.s can you please have a look at his web pages he is well versed in CCSVI and the works of Dr. Shelling and has some very valueable input that would help IR's and anyone for that matter who is involved with MS.
I see that Cheerleader (Joan Beal) has made contact and Costumenational has a very good dialogue with Dr. Flanagan about his situation and CCSVI.
There is more on the Dr.'s web site that needs looking at also, please have a read!
http://uprightdoctor.wordpress.com/ccsv ... odynamics/
Regards Nigel
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