DrSclafani answers some questions

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

Postby Cece » Tue Sep 14, 2010 2:36 pm

drsclafani wrote: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.

No more pushing the envelope? You can get nasty paper cuts that way....

I worried a bit too, it had been awhile. Glad you're doing good.
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Postby blossom » Tue Sep 14, 2010 9:12 pm

hi, dr. sclafani. so glad you are home all so safe and sound. i too was a

little worried. with the united states so in debt to China financially i was

getting worried that they may decide to keep one of our "National

Treasures" as collateral. welcome home!!
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Postby joana123 » Wed Sep 15, 2010 12:19 am

Dear dr. S,

only few words, please.

Best regards,
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Postby SaintLouis » Wed Sep 15, 2010 1:50 pm

Dr. Sclafani:

1. Regarding collateral veins, are we born with all the collateral veins we will ever have and they just sit on the sidelines unless needed OR does the body quickly try and create more of them as the need for them arises? (Like in CCSVI, chronic and slowly progressing or other vascular conditions)

2. What relationship would decreasing spinal fluid have on the blood flow in or out of the brain? Could tapping the spinal fluid cause a significant reduction in venous pressure in the brain/IJV's/Azygos?

Thanks again for all that you do!

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Dr. Sclafani: current view on cutting ballons

Postby nanobot » Wed Sep 15, 2010 9:51 pm

Dr. Sclafani:
Could you please give us an update on the "cutting balloon" use for venoplasty since your first use in March when it was like "butta". Is there a higher risk of thrombus and should more follow-up be given to check by ultrasound when it is used? Dr. Gary Siskin did discuss this in his lecture at the SUNY conference Aug. 2010. There is no published guidance for the use of this device in veins with MS disease and I would like to hear about development of a standard for using the cutting balloon. Veins can be much weaker than arteries are they not? Dissection is a risk with venoplasty, and what benefits does the cutting balloon have? Very few have been proven in cardiac artery uses. Please help. This is becoming a hot trend on the west coast. Thanks....
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Postby Opera » Thu Sep 16, 2010 4:36 am

Dear Dr Scaflani,

I do hope you had an interesting holiday in China.

I have been going through the information you were kind enough to share with the MS Community with regard to CCSVI and more specifically restenosis. However, I have not been able to find an answer to my current problem with regard to restenosis shifting from place to place.

I had a Doppler Ultrasound in March this year which showed bilateral mid internal jugular stenosis. However, no reflux was detected presumably because the Sonographer was very new to the concept of CCSVI.

An angioplasty/venogram was done in May which showed evidence of stenotic change at the valves on both sides. Both valves were balloon dilated to 12mm. The azygos was found to be normal with pressure in the distal azygos at 12mm, in the middle azygous vein at 12mm and in the superior azygos vein at 9mm.

There was some improvement in fatigue which disappeared within 7 days.

A second Doppler examination a month after the procedure showed “unaltered stenosis” of both jugular veins. However, there was an improvement in the flow of both jugulars. Reflux was detected in both veins. A second angioplasty/venogram was performed. In the RIJV the stenosis was found to be in the upper portion of the RIJV with no stenosis at the valve. This was ballooned to 12mm and there was good flow with significant reduction in collateral venous return. In the LIJV there was mild stenosis at the valve which was ballooned with improvement in venous flow.

However, there was no impact on my symptoms. A third Doppler ultrasound was performed one month later. There was reflux only in the LIJV which had a CSA of 0.4cm2 and a venous flow recorded at 208 ml/m in the supine position. There was stenosis of the RIJV but venous flow was recorded at 618 ml/m in the supine position. An MRV was performed a few weeks later which confirmed that there was no stenosis in the LIJV. However, there was stenosis in the proximal RIJV from C1 to C4. There was filling of the collateral venous return via asymmetric intraspinal epidural venous plexus along the right.

You had mentioned that upper IJV stenosis may be transient and may be the result of problems lower down the jugulars.

However, I am nervous to undergo angioplasty/venogram for a third time because the restenosis keeps shifting from place to place. I am worried that the next time round the restenosis may spread to the transverse and sigmoid sinus. Are my fears justified? I greatly appreciate any feedback you can give me based on you experience.
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Postby Frank » Thu Sep 16, 2010 5:11 am

Dear Dr. Sclafani,

I had my CCSVI examination (only MRV) appointment with Prof. Vogl. According to the findings I have collateral networks on both sides. My rIJV shows some stenosis about 20%. My lIJV is hypoplastic (about 3-4mm diameter). Some retrograd flow has been detected.

Prof Vogl told me he would be able to dilate the hypoplastic lIJV. I have read some posts about hypoplastic lumbar veins which are said to be inoperable at the moment.

How do you consider the chances of a successful surgery/dilatation for hypoplastic IJV? How would you estimate the risk of restonsis i such a case - especially high, especially low, quite the same as in other cases of "regular" stenosis.

Treatment: Gilenya since 01/2011, CCSVI both IJV ballooned 09/2010, Tysabri stopped after 24 Infusions and positive JCV antibody test, after LDN, ABX Wheldon Regime for 1 year.
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Postby Thekla » Thu Sep 16, 2010 6:47 am

Dear Dr Sclafani,
I was also tested (mrv only) and based on the findings treated by Dr Vogl in August. LIJV, 40% and RIJV, 10% blocked very high, the azygous was judged to be in order but was also run through quickly after the ballooning to 'be sure'. I experienced immediate lack of fatigue and improved mental clarity (which I hadn't been aware that I was lacking) There was initially improved muscle strength in the legs and much better bladder symptoms which quickly faded.

I am wondering whether, considering Dr Tariq's experiences with azygous irregularities, if azygous problems might be being missed, particularly when only a mrv is done for diagnosis. I think there would be no identification of flow disturbances, if I understand correctly. Perhaps, flow disturbances are also being discounted since some blood is getting through anyway.

Can you please comment?
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Postby NZer1 » Thu Sep 16, 2010 1:47 pm

Hi everyone, recently Costumenational has been in communication with a Dr. Flanagan who worked on the blood flow in the spine and skull very extensivly at a similar time to Dr. Schelling.
The work of these to men compliments and in my veiw, explains some of the missing detail in Dr. Zamboni's work.
PLEASE read all of this man's work on his web site and it may have answers for the re-stenosis issues as well as many other, as yet unconnected aspects of CCSVI.
The site has allot of information that is in laymans terms, for a rational person like me it gives some meaning to CCSVI that is missing.
Dr. Scalafani this is even more important for you in your search for answers!!!!!!!!!!!!!!!!
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Postby drsclafani » Fri Sep 17, 2010 5:52 am

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.

i do not think that hypertension leads to narrowed veins
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Postby drsclafani » Fri Sep 17, 2010 6:01 am

nicknewf wrote:
drsclafani wrote:
nicknewf wrote:Dr. Sclafani,

Since your symposium, have the physicians who participated started to fall in line around a common treatment protocol... are most sharing information between each other - or are most people practicing in silos?


Absolutely not!

the promise by SIR (society of interventional Radiology) to create some guidelines is helpful and cannot come soon enough...

in the meantime, you have to start asking about experience, and outcomes from the treating physicians and not get too desparate for anyone who offers treatment.

Dr. Sclafani, thanks for your response, and enjoy yourself in China. As a follow up question. I have just read Mehta's approved trial, and I am concerned that they are treating stenosis rather than valves. The more successful (based on data at your symposium) practitioners seemed to be focusing on the valvular issues and observing that in some cases, the stenotic lesions resolved once the valve was corrected (I was never sure if the stenosis were downstream or upstream from the valve problems, but I thought downstream with collateral formation and bulging upstream).

some semantics are necessary:
i differentiate narrowing that may be caused by many things, some of which are not permanent or abnormal from stenosis which implies to me a fixed narrowing. This is very important concept. Valves that do not open because they are malformed lead to stenoses. Scar tissue or atherosclerosis causes stenosis of arteries and dialysis grafts. Narrowing might be due to the fact that there is little blood filling a vein or due to a higher pressure structure like the carotid artery indenting it. If you fill the vein it distends from a physiological narrowing but will not if it is malformed vein.

This is a difficult perceptual concept and does lead to confusion. Sorry but true. and you are not alone in this confusion. Many doctors also are confused

Do you know if Mehta plans to treat the stenosis by first treating the valve (cutting the valve) and then doing upstream balloon angioplasty on stenosis at other locations only if they do not resolve?

sorry, i do not

My wife will be one added to the list of pioneer patients this month, and I want to be able to have a sensible conversation with her and her physician pre-treatment about risks, protocols. I have met her Dr. and trust him to do an excellent job; but he's obviously less than a year at this too!

Thanks again for everything you do here. The peace of mind you help provide is solace.

i think that there are very very few people who are indeed fully experienced in ccsvi or liberation. I would include myself among them. Dr. Zamboni would consider anyone who has not performed 50 procedures to still needing experience.

thus your wife is a pioneer

good luck
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Postby drsclafani » Fri Sep 17, 2010 6:04 am

Zeureka wrote:
drsclafani wrote:
Zeureka wrote:
Could MTS or other stenosed lumbar area veins also cause a symptom such as numbness only with the SENSATION of swelling accompanied by pins&needles (without however a visible swelling of feet/legs)? Thanks a lot for getting a clearer idea on this.

i think that those symptoms sound more like nerve problems instead of vein problems.
Thank you Dr Sclafani, thought so as well..unfortunately...

For already settled myelin damage in spinal cord causing this (whether the damage primarily caused by CCSVI or not), the only hope of repair might then be this embryonic stem cells/oligodendrocytes technique? Lets hope Obama wins...but know that's a completely different field, also very political...oh gosh...but...may I still be so nasty to ask you your general view on this?

zeureka , love you too

but i am not going into politics!

it has nothing to do with the medicine here
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Postby drsclafani » Fri Sep 17, 2010 6:06 am

nellie wrote:Dr. Sclafani,
2 yrs. ago before I ever heard of ccsvi my gp sent me for a ct scan of my
neck saying she felt there could be a problem.
Clinical Indication---Right sided neck mass
Technique--Ct of soft tissues of neck with intravenous contrast
Findings-- visulaized pulmonary apices are unremarkable. Visualized thyroid gland, submandibular and partoid glands appear within normal limits. Visualized posterior fossa structures appear unremarkable. Mild mucosal thickening of the floor of the right maxillary sinus. Grossly the vallecula is within normal limits. There is mild fullness within the left vallecula due to fullness in the left tongue base likely representing variation inflammation. The pirigorm sinuses grossly appear within normal limits. Cervical airway is widely patent.

No suspicios pathologically enlarged lymph nodes. There is some mild prominent bilateral external jugular veins.

Mild diffuse degenerative changes of the cervical spine.

1. Mild mucosal thickening within the floor of the right maxillary sinus
2. Otherwise, unremarkable CT of the soft tissue of the neck

Dr, my question is after reading the results is there anything in this report to suggest ccsvi? Of course at the time of this test neither she or I had heard of ccsvi but looking back at the test results is their anything pointing to ccsvi or was this test not an indicator for ccsvi? I guess since it was done I was wondering if any results pointed to a ccsvi problem?


mildly prominent external jugular veins......hmmmm, could this be an underestimation of the collateral flow by a radiologist not thinking much about that? Could the "mild" have been "significant"?
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Re: ccsvi

Postby drsclafani » Fri Sep 17, 2010 6:12 am

katiee wrote:i have always been a person who BRUISES very easily. I have heard that people who bruise easily have more fragile veins. Is this true? Are persons who bruise easily more at risk for problems from a venogram, venoplasty or stenting? If yes, what are the potential problems?

Love these shorter questions!

one of the causes of easy bruising is fragile veins, or capillary fragility too. but there are many other causes of easy bruisability.

i do not think that there is much of a problem of bruising from a venogram. bruising often is more likely to be caused by accidental or inadvertent needle puncture of a small artery near the vein. Venous fragility is not likely to be a problem. but some of the other causes of easy bruisability are. your doctor may do some blood test to determine whether other things are causing the bruisability are present

How does a person know if they have a hypercoaguability state in their blood system? What are the post procedure problems that might occur with these individuals?

symptoms of hypercoagulability include embolism, clotting, DVT, pulmonary embolism to name a few. hypercoagulable patients are at risk of thrombosis of their angioplasty
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Re: Testing for all

Postby drsclafani » Fri Sep 17, 2010 6:15 am

NZer1 wrote:Hi everyone. Dr.S I am keen to get testing for all happening now as a first step and let the experts sort out the treatment detail. It seems to me that we have enough data to prove CCSVI and MS are common together for PwMSers. Enough reports of symptom improvement, especially when compared with DMD'S and other options. Not allot but enough to pump for testing knowing the treatment detail will happen.
I believe that we PwMSers need to focus on getting the one thing going that we can achieve right now.
Testing and setting up a data base with results and an assessment of symptoms and disability.
At the point in the process of getting Treatment ok'ed we could be more proactive with getting training and equipment up to scratch and getting that happening either through Insurance and or Government Health systems. At first the Govt will likely baulk. The likely hood of treatment happening is inevitable the need to get the wheels turning for testing is NOW.
What a yah think. :lol:

i think we need to encourage science and data collection, regardless of where and who does the procedure. Dr. Zamboni has created a registry so we can capture as much data as possible
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