DrSclafani answers some questions

[drsclafani]

Dr Sclafani,

You never cease to amaze me! Thank you once again for all you are doing!

My question is this...

Say a person has ccsvi treatment by a doctor other than you. Can they later swap doctors and have ongoing care/further treatment, if needed, with your team?

Pam

There are so many patients going to foreign places. Some of these doctors have little experience with liberation and with angioplasty. It would be impossible for me to see all of these patients and still treat patients waiting for my return to clnical practice of liberation.

perhaps i need to work toward an institute in new york to care for these patients. of course under IRB oversite of secondary treatment of patients

The more i think of the consequences of the treatments programs that cannot realistically perform the aftercare of patients. Some do not even speak english very well, i read here.

We must get started in treating on this continent.

[drsclafani]

I have an actual question I was working on...

"PTS develops as a direct result of having the blood clot stay in the vein. The blood clot continues to block the vein and permanently damages its one-way valves, resulting in the pooling of blood in the leg, chronic leg pain, swelling and fatigue and sometimes skin ulcers. It's logical that immediate clot removal will prevent PTS," said Vedantham.

http://www.medicalnewstoday.com/articles/121554.php

This is a quote about a totally different condition, but that line stood out to me...in CCSVI, while sometimes it is likely that the valves were malformed to begin with, might it sometimes be the case that one occlusion leads to a valve upstream being damaged due to the crazy blood flow?

that is the CCSVI theory

[drsclafani]

We could put this up as a poll here...we might find quite a few people who want the unproven venoplasty treatment.

cece
i fully understand your position on this. Unfortunately doing unproven treatments that are NOT the standard of care are fraught will opportunities to do harm, manipulate patients, lead to a negative backlash, etc. Thus such situations are usually handled by oversight committies such as an IRB or by a new procedure committee,

otherwise medicine would turn into a hair salon

I know, I was just teasing.

I think it is crucial to prove it so that it can be gotten out to the masses as soon as reasonably possible. (MaSses?) Otherwise it would stay as it is, with a trickle of motivated patients willing to go for it but most people unaware.

as for what cut I want at the hair salon, I would like long & flowing & untangled (veins)

very cute, i like that one

[drsclafani]

Thank you, Dr Scalfani, for caring so much to answer our questions. I have spent a lonely Saturday night reading all 99 pagers of this forum, and have learned so much. (((hugs))) to you...blushing...

I have been tested in Buffalo, NY, and my right jugular vein was found to be narrowed (moderate to severe stenosis), and I have booked a date for Liberation in San Jose, Costa Rica.

My question is: Do you think that continuing an interferon drug (Avonex, in my case) is wise after Liberation? It's making my hair fallout LOL

it is breaking my heart that you and others are traveling to third world countries to be treated by unknowns with no chance of followup

At least we can provide some kind of followup through the survey tools we are creating under the magnificient leadership of squeakycat

[drsclafani]

Thank you, Dr Scalfani, for caring so much to answer our questions. I have spent a lonely Saturday night reading all 99 pagers of this forum, and have learned so much. (((hugs))) to you...blushing...

I have been tested in Buffalo, NY, and my right jugular vein was found to be narrowed (moderate to severe stenosis), and I have booked a date for Liberation in San Jose, Costa Rica.

My question is: Do you think that continuing an interferon drug (Avonex, in my case) is wise after Liberation? It's making my hair fallout LOL

dr zamboni advises patients to stay on their medications.

if you were my patient, i would defer to my neurologist, dr helen valsamis.

[hope410]

Just wondering if you might have any thoughts on this, to help us understand exactly why this isn't considered "just another venoplasty" that is already approved for use for blocked veins in all parts of the body and performed for decades? Why is this being treated as "special", requiring IRB and protocols?

thanks.

[Why not to treat 50 (500) 'individuals' then Not trying to be a smart ass but isn't a group merely a suite of individuals? That's just picky'ing around (just invented that one to suite my needs; without approval ).

I'm very surprised at this distinction between one versus many too. If you had one patient who benefited from an off-label use of something or new use for established procedure, wouldn't you have an obligation to treat others/everyone the same way?

And did casting a broken left leg to set it while it healed require a different IRB process than a broken right leg?

Or is my analogy not the same as this situation, i.e., a broken left leg is the same as a broken right leg, but a blocked liver vein is not the same as a blocked azygous vein? So ballooning different veins is very unique and therefore ballooning different veins needs separate IRB protocols and investigations? Is each different vein going to require its own IRB oversight, or at some point, is a vein just a vein just a vein?

I'm really confused by what the problem is when veins ARE ballooned already and have been, as you said, for decades.

[thisisalex]

Hello Dr. Sclafani,

im a big fan of your presence here, and would like to ask a question.

A neurosonographer has jus published a critical approach to Zamboni's Doppler methodology.
He thinks that 3 out of the 5 Zamboni criterias are completely nonsense, and are not for diagnosing an occlustion in a vein.

He also states that none of the Ultrasound pictures published by Zamboni convinced him that a vein occlusion has been observed.

He gives detailed description about his doubts here:
http://www.thisisms.com/ftopic-11804-0- ... rasc-.html

May i ask your professional opinion about these statements? It would be very important to reply to his opinion, because in hungary we have just started to organize a CCSVI trial... and would like to finish it

thank you very much!
alex

This one requires some thought and discussions before i post

Dear Doctor,
Its great you take care of this issue!

i researched dr Panczel's numbers (he says reflux is normal for 0,22 - 0,78 sec in the IJV in a healthy person ) and have found them in this paper (which paper is referenced by Zamboni itself)
http://www.ncbi.nlm.nih.gov/pubmed/1557 ... t=Abstract
So, these numbers were measured during Valsalva maneuver, which is not true for Zamboni....

found the other paper also (which talks about the cross sectional area of IJV in healthy people), which is referenced by Zamboni also:
http://www.ncbi.nlm.nih.gov/pubmed/1128 ... t=Abstract

These papers are not referenced by dr Panczel (he doesnt give any references btw) i just presume he used these sources, because the numbers are similar to his numbers.

I appreciate your effort!
thank you very much
alex

[Nunzio]

Dear Dr. Sclafani,
yesterday I had my liberation treatment done locally.I have to report the procedure went well and I did not have any discomfort after the procedure.
Unfortunately they did not find any problem to treat.
My right IJV was narrow due to poor flow from the transverse and sigmoid sinus, so I knew there was nothing to do there.
The left IJV is large (about 1.5 cm. in diameter) with no postural change in diameter and extensive reflux. This made me think to a valve problem, but they told me, after surgery that they checked the valves with IVUS and contrast injection and found no problem. Same for azygous vein.
So my question is: How is it possible I have such an extensive reflux with no blockage? Is it possible there was a thin membrane that was open by the procedure? Could I have something similar to the Thoracic outlet syndrome? I mean some external force pushing on the vein?
Looking foreword for your answer.
Nunzio

Sorry that your liberation did not make any changes to your condition. What is your MS classification.

i did have one case early in my experience where venography looked normal on several views. one one view there was the thinnest of horizontal webs. It seemed that it was possible for a web to be pushed up by the catheter and be "invisible". I was very lucky indeed to see this.

I am diagnosed with Primary Progressive MS.
I had an Optic Neuritis attach 15 years ago follower by MS about 11 years ago; getting slowly worse since.

[Nunzio]

Dear Dr. Sclafani

My son is on your waiting list but unfortunately we did not anticipate such a delay. He fractured his right clavicle about 10 years ago. The orthopaedic
placed a screw which he later removed. He was diagnosed with MS
Sept 2009. I have mailed all his medical reports to Holly. Since he is
in a state of panic as soon as he found out about the delay, he had a
CCSCI DOPPLER EXAM by an inexperienced IR. According to his
findings there was cerebral blod flow disturbances He suggested
an MRV.

Is there a gold standard diagnosis for CTOS? Should he be tested /treated ?

sorry but i am not familiar with CTOS. what does this mean?

Cerebellar Thoracic Outlet Syndrome, discovered By Dr. Noda about 20 years ago.
I started a tread abot this here
http://www.thisisms.com/ftopicp-98000-.html#98000

[pklittle]

Dr Sclafani,

You never cease to amaze me! Thank you once again for all you are doing!

My question is this...

Say a person has ccsvi treatment by a doctor other than you. Can they later swap doctors and have ongoing care/further treatment, if needed, with your team?

Pam

There are so many patients going to foreign places. Some of these doctors have little experience with liberation and with angioplasty. It would be impossible for me to see all of these patients and still treat patients waiting for my return to clnical practice of liberation.

perhaps i need to work toward an institute in new york to care for these patients. of course under IRB oversite of secondary treatment of patients

The more i think of the consequences of the treatments programs that cannot realistically perform the aftercare of patients. Some do not even speak english very well, i read here.

We must get started in treating on this continent.

Actually, I meant a scenario where someone would get initial treatment in the US, not a foreign country. Just asking.

[Kirtap]

Dr Sclafani,

I have a good question and i didn't find the answer in the thread.
I have the rrms since 2006. Since 3 weeks i have been feeling well, almost no symptoms...
When on remission, is it because the stenosis is gone? Are they going to have difficulties to find blockages because i am on remission? Should i wait that the symptoms come back to get the treatment?

Thank you.

[drsclafani]

Hello Dr. Sclafani,

im a big fan of your presence here, and would like to ask a question.

A neurosonographer has jus published a critical approach to Zamboni's Doppler methodology.
He thinks that 3 out of the 5 Zamboni criterias are completely nonsense, and are not for diagnosing an occlustion in a vein.

He also states that none of the Ultrasound pictures published by Zamboni convinced him that a vein occlusion has been observed.

He gives detailed description about his doubts here:
http://www.thisisms.com/ftopic-11804-0- ... rasc-.html

May i ask your professional opinion about these statements? It would be very important to reply to his opinion, because in hungary we have just started to organize a CCSVI trial... and would like to finish it

thank you very much!
alex

This one requires some thought and discussions before i post

So, as you all know, I am not an electrician. And I am not a sound designer.

I am a humble plumber trying to improve your circulation.

Therefore I admit that sonography is not my expertise.

So, I went to the source of this CCSVI, Paolo Zamboni and asked him to advise me. With some editorial license he gave to me to correct the English, here is my correspondence with Dr. Zamboni's response. I will not do this again.

We can discuss further after you read from the general contractor

2010/5/23 Salvatore Sclafani

> Ciao Paolo
>
> As I told you, I educate patients about CCSVI on a webside (thisisms.com).
> This is viewed about 15,000 times per week by patients from all over the
> world, from china to canada to europe and US. I have taught them about IRB,
> trial design, ethics of trials, physiology, ballloon design and risks and
> benefits. I encourage them and I empathize with them. They are a remarkable group.
>
> Today I need your help with their questions, becasue this is not my
> expertise and must explain for them the theory in light of a neurosonologist's opinion
> in hungary. Will you help me answer this please? I want some intelligent
> and expert opinion and I cannot give it.
>
> THE PATIENTS WHO HAVE READ MY EDUCATION ON CCSVI HAVE READ IT 119,000 TIMES
> IN NINE WEEKS. iT IS IMPORTANT THAT I CAN EXPLAIN DR GYULA'S OPINION TO
> MAINTAIN THE MOMENTUM AND ALLOW THE PATIENTS TO HAVE CONTINUED HOPE. HOPE IS
> DIFFICULT WHEN ALL THE DOCTORS IN US AND CANADA ARE STRUGGLING TO START THE
> TREATMENTS.
>
> I WILL ATTRIBUTE TO YOU OR NOT AS YOU WISH. BUT T NEED YOUR HELP.
>
> GRAZIE
>
> sal

>>> Paolo zamboni Paolo zamboni 05/23/10 4:39 AM >>>
Sal,

I prefer to answer on scientific journals. The real battle is there. Your
IVUS data are more urgent, in my opinion.However please below find an
answer. Please improve the language

The description of the criteria was made to allow anyone to see
abnormalities of the cerebral venous return that had never been seen by
anyone before. The flow anomalies express the presence of vicarious veno-venous
shunts. This is 'the true essence of CCSVI Doppler hemodynamics. Flows
hampered by septa, membranes, valves, show long lasting abnormal reverse
flow in the direction of lessresistance collaterals, with lower flow/minute.
The presence of these abnormalities correlates with catheter venography, the gold standard
The Doppler studies also correlate well:
With lower CSF dynamics
-With the worsening of MRI perfusion parameters
With-iron accumulation in subcortical gray matter

More specifically
Criterion 1 is not to be measured under Valsalva, but refluxes lasting
seconds have to be detected after normal breaths scanning the entire IJV

Criterion 2 is measured with greater reproducibility using the QDP system. this is specialized, a multigate with> 150 Doppler samples

Criteron 3- was adopted to show that sometimes the jugular is so empty of blood that its diameter can not even be measured. It is completely collapsed

Critereon 4 shows the absence of flow. it is just not t Doppler detectable

Criterion-5 shows an abnormality of postural control of venous return

A recent paper demonstrate the need to be trained to this specific Doppler protocol

Nice Sunday
Paolo

[drsclafani]

Dr Sclafani,

I have a good question and i didn't find the answer in the thread.
I have the rrms since 2006. Since 3 weeks i have been feeling well, almost no symptoms...
When on remission, is it because the stenosis is gone? Are they going to have difficulties to find blockages because i am on remission? Should i wait that the symptoms come back to get the treatment?

Thank you.

I do not think that remission means that the venous outflow obstructions are relieved at all. I am not clear at this time about why an exacerbation occurs.

the effects of CCSVI are likely chronic long term problems. Relieving the obstructions hopefully will reduce exacerbations in the future as was seen in dr zamboni's paper.

[thisisalex]

So, as you all know, I am not an electrician. And I am not a sound designer.

I am a humble plumber trying to improve your circulation.

Therefore I admit that sonography is not my expertise.

So, I went to the source of this CCSVI, Paolo Zamboni and asked him to advise me. With some editorial license he gave to me to correct the English, here is my correspondence with Dr. Zamboni's response. I will not do this again.

We can discuss further after you read from the general contractor

Dear dr. Sclafani,
It's truly touching for me to read the exchange of letters of two real heros.
Thank you very much for forwarding my topic to Zamboni!!
I enjoyed reading the answer from Zamboni. he is so calm. he has the power of knowledge.
I think this answer is OK, except one statement which was not addressed by dr. Zamboni:

dr. Panczel wrote:
...There are other interesting statements in Zamboni's papers. Above the vein occlusion the pressure is elevated, it would be logical for the wall to dilate, but Zamboni describes narrowing of the walls.

i have heard about this from patients, but don't know the reason for this phenomenon.

thank you again
have a nice Sunday,
alex

[girl69]

do you see a pattern that would lead you to expectations about abrupt improvements? the easy things to imagine would be type of MS, length of disease, etc.

i'm wondering though about the importance of "little veins", ones that MR can't images at 1.2mm and you can't get at with a catheter.

is there enough of a pattern of brain/spinal lesions that would lead you to expect things more specific than spinal -> azygos?

the correlation between CCSVI and MS seems so high, that it might be the people who don't see dramatic changes are the most interesting cases. they may have just as serious an issue with blockage, but at a finer grain.

Hi Dr. S
First I just have to say (and I know you have heard it before!) thank you, thank you, merci beaucoup for being such a dedicated doctor and generous human being !
So, referring to the previous post, I am sadly one liberated patient with no improvements what so ever (end of March). I did get a stent in the right IJV, but as they don't overstent, I was left with a left IJV at about 60% capacity. Do you think that could be related ? I am going back to Poland for a check-up end of June and I wonder if anything more can be done (they said azygous was fine, they must have looked at the vertebral veins as well, right ?).
I know it's tough to say something, but any ideas would be appreciated !! I sooo want to feel positive changes as well (yep! Duh )
Also, if there is anyone like me, contact me so we can do some constructive brainstorming maybe !!!
Thank you very much !!!
Michelle

what is your classification of your MS? If you are PPMS, you would fit Dr. Zamboni's profiles. In such situations, there has been conjecture that no change may be positive if no change means you did not worsen.
60% capacity means 40% stenosis. I wonder if they measured stenosis of the diameter or stenosis of the area. A forty percent narrowing of the diameter would be greater than 50% narrowing considerd by Zamboni to indicate need for dilatation.

But stenosis is not the only reason to perform angioplasty. Valve stiffness or stenosis can also cause resistance to flow and to reflux

please remain hopeful. There is much to learn about this venous problem. Perhaps we will learn in the future that other treatments will augment Liberation

Thank you very much for your time, Dr. and to answer your question, no, I am not PPMS. I have however probably sometime these last years become SPMS... Well, concerning the left IJV it says on my report : "persistent stenosis remains at 30% (40) - stenosis at level of pathological valve at the mouth of IJV". Doesn't really help us clarify if they measured stenosis of the diameter or stenosis of the area, does it ?!?
Also, may I please ask your opinion on what Dr. Galeotti spoke about during last April's CCSVI workshop in Sardegnia: , he talks about the very complex spinal venous system and mentions the azygos related to problems in several other veins (like the renal vein) (at about 5:00 mns in).
Do you believe this is an area that needs to be explored more and can one maybe oversee problems more easily there ? If I have still have a problem, does it seem like a good place to look at ?

la ringrazio molto !!!
Michelle