DrSclafani answers some questions

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

Postby drsclafani » Sun Jun 13, 2010 4:20 pm

Cece wrote:patience, patience, patience...
I'll have a Phd in patience by the time this is through...
anyone think we will still hear today? It is into the evening in Italy now...our rock star has more than earned a good night's rest tonight.

fogdweller wrote:One addendum: After publication and approval by some important scientific group, the procedure might become "standard of care" so that every competent surgeon is supposed to try to apply this procedure. And that is not always based on huge studies. For example, inducing hypothermia in cardiac arrest patents became the standard of care after a study of only 56 patients.


I find that so strange...that line between "can't do this, it's unproven" and "must do this, it's proven" is mighty slim.

it has to be statically significant. the higher the significance, the more compelling.
for the association between ms and ccsvi, the data was highly significant.
for treatment outcomes, less so. All the more reason for more study rather than blind faith
User avatar
drsclafani
Family Elder
 
Posts: 3132
Joined: Fri Mar 12, 2010 4:00 pm
Location: Brooklyn, New York

Advertisement

Postby drsclafani » Sun Jun 13, 2010 4:20 pm

bestadmom wrote:Cece,

Patience until Monday. We'll be lucky if it's sooner.


you guys certainly do not qualify for "lucky" most of the time
User avatar
drsclafani
Family Elder
 
Posts: 3132
Joined: Fri Mar 12, 2010 4:00 pm
Location: Brooklyn, New York

Postby drsclafani » Sun Jun 13, 2010 4:31 pm

SofiaK wrote:Dr Sclafani:

Do all MS patients have vein narrowing? An MRV should show any narrowing, no?

I’m confused because I’m hearing different things.

Many thanks,
Sofia


not all ms patients have vein narrowings. some have stiff valves that do not open (effectively results in a narrowed vessel) others have actual actual hypoplasia of the vessel where it never grew up to be an adult sized vein.

mrv is misleading. it often does not show the real narrowing but shows narrowings resulting from no flow rather than from a persistent narrowing. We have not discovered how to read the mrv with sufficient clarity
User avatar
drsclafani
Family Elder
 
Posts: 3132
Joined: Fri Mar 12, 2010 4:00 pm
Location: Brooklyn, New York

Postby NZer1 » Sun Jun 13, 2010 4:33 pm

Sorry to break the rules DR. Thought this was of interest to all.
http://www.facebook.com/pages/CCSVI-in- ... 0796282297
From the Hubbard Foundation

Arlene Pellar Hubbard Hi Angela,
As of last Thursday's IRB approval we can now do "one stop."
This is what you can do. Here are the steps:
1: fax or email a prescription/referral from your doctor (fax # 858 444-3599 or email hubbardfoundation@gmail.org)
2:take the CCSVI tests at AFI in San Diego. Our next available date is in July.
...3: if positive, have the catheter angiography/angioplasty the next day.
4: return to AFI for follow up testing the day after the angioplasty.
Costs:

The charges will be $2,500 for testing, $5,000-$6,000 for the IR and
$22,000 for the hospital. We do not know how much your insurance will
cover (our insurance for our son Devin covered all but $1,000 of the
hospital bill). We also know that the hospital will give a 40% discount
for patients paying cash within 30 days.
Hope this helps,
Arlene
User avatar
NZer1
Family Elder
 
Posts: 1516
Joined: Thu Feb 18, 2010 4:00 pm
Location: Rotorua New Zealand

Postby drsclafani » Sun Jun 13, 2010 4:33 pm

i will discuss this more later when i give my zamboni report, but not all ccsvi is picked up via azygous and jugular venography. I was caught by surprise on that one! but you will have to wait for an explanation of some of the negative venograms!


When I read zamboni's paper, I noted that he stated that roberto galleoti, the IR who works in ferrara, enters the left femoral vein and advances up into the azygous and the jugulars. I thought that peculiar because it is such a straighter shot up the right femoral into the jugulars and azygous. In my entire career I have entered the right side in more than 98% of procedures. (For your information catheter manipulation is always more accurate in a straight line. when the catheter has to curve, it loses some of the fine tuning.)

The paper never really explained why robbie did that. So as i watched that first procedure in ferrara, i noted that they did a venogram of the left iliac vein and then catheterized the left ascending lumbar vein and did another venogram. I aske paolo what that was all about and he told me that they were looking for narrowing of the left iliac vein (a congenital narrowing called May thurner syndrome) and then were looking for hypoplasia of the lumbar veins. They also looked for narrowing of the vein of the left kidney. The light went off! That was why they entered from the left side.

Paolo, why didnt you say so in your paper, I asked. Because the editors cut it out for space reasons!

So now i will do all my catheterization from the left femoral approach, even though I dont like to.

How can evaluating the lumbar veins be helpful? it is helpful in explaining the disease. at the current time, there is no solution to the lumbar vein narrowings (hypoplasia). But it can explain the disease. It appears that lumbar hypoplasia is associated with PPMS.

The mechanism is that narrowing of the renal vein and the iliac vein reduce the ways for the blood to exit the spine. in fact they may actually increase that flow. And perhaps that leads to ccsvi of the spine.

So i think that some of those who have had venograms that appear normal just havent had all the right imaging done.

Not to say that all the venograms I have seen done around the worlds would be something leonardo would have been proud of.
Last edited by drsclafani on Mon Jun 14, 2010 8:24 pm, edited 1 time in total.
User avatar
drsclafani
Family Elder
 
Posts: 3132
Joined: Fri Mar 12, 2010 4:00 pm
Location: Brooklyn, New York

Postby drsclafani » Sun Jun 13, 2010 4:37 pm

scorpion wrote:L maybe Simka and Zamboni's results were skewed. That is another conclusion one can draw. Dr. Sclafani please share your response as to why some of the people on this board are relapsing after the liberation procedure. Does that make you question the relevance of the CCSVI?


scorpion, thanks for returning.

the relevance of ccsvi in my mind is undeniable. relapse after liberation seems more related to the technique of liberation rather than the validity of ccsvi

another reason for recurrence is that we are seeing the results on inexperienced operators. Another long discussion is warranted on that. And a research project i want to do in collaboration with those who have been tested. Dr. Z and I wonder about the understanding and knowledge of those performing testing and treatment. more on that later in the week
User avatar
drsclafani
Family Elder
 
Posts: 3132
Joined: Fri Mar 12, 2010 4:00 pm
Location: Brooklyn, New York

Postby drsclafani » Sun Jun 13, 2010 4:38 pm

SofiaK wrote:Gee, thanks for the figures L.

Wouldn't the MRV test show the narrowing accurately, however?


MRV is not accurate and is sometimes misleading. perhaps in dr haake's lab but in most mrv is crappy and mis interpreted
User avatar
drsclafani
Family Elder
 
Posts: 3132
Joined: Fri Mar 12, 2010 4:00 pm
Location: Brooklyn, New York

Postby drsclafani » Sun Jun 13, 2010 4:40 pm

girlgeek33 wrote:
SofiaK wrote:Thanks girlgeek33. Great info! I understand.

This dr I know of does a catheter venogram. I'm concerned about his procedure finding everything.


I think the risk of not finding something with venogram is minimal... It can happen, but not often...


we have no data on the accuracy of these tests.
i just learned of something i wasnt doing that would miss things. but i find some abnormalities on every patient so far
User avatar
drsclafani
Family Elder
 
Posts: 3132
Joined: Fri Mar 12, 2010 4:00 pm
Location: Brooklyn, New York

Re: Dr. Sclafani

Postby drsclafani » Sun Jun 13, 2010 4:42 pm

Cece wrote:
drsclafani wrote:
msfitz wrote:Do you know when you might be permitted to perform testing and treatment again? I live in the MW and nobody seems interested in CCSVI, I've written teaching hospitals, universities even a VS/IR clinic (VIRChicaco) all in or near Chicago also St. Louis University. The clinic did say they were going to start a study, but I can't wait. I already use a walker and will be going to assisted living in July. I was just divorced Dec. '09 and I know I'll never be 100% but even the smallest improvement is stilll an inprovement and a big one is you've lived with MS for fifteen years! My biggest problem is that I can barely use my right leg, and I have terrible drop foot, I hear drop foot is one of the symptons people are showing improvement with after being liberated, and I just want a chance to get even a little better and if not, we'll know CCSVI wasn't my problem!

Please inform us when you can do the procedure again, thank you.

Bridget Wehmeyer


bridget
follow my message below to sofia. Get on the waiting list. maybe more than one. Time will go by and you will be treated. Do not wait to get on a list,

when the logjam breaks you want to be in the boat


Dr. Sclafani, this sad news was posted elsewhere here, but I wasn't sure you were aware of it. Bridget Wehmeyer, who posted the above, passed away on May 26th at the age of 44 from complications of MS. Her post above was the only post she made on thisisms.com.


this has broken my heart and put tears in my eyes.

please find next of kin for me. I would like to ask whether I can name my first study "the wehmeyer study" in her honor
User avatar
drsclafani
Family Elder
 
Posts: 3132
Joined: Fri Mar 12, 2010 4:00 pm
Location: Brooklyn, New York

Re: I decided in December to have stents put in.

Postby drsclafani » Sun Jun 13, 2010 4:43 pm

larmo wrote:I decided in December to have stents put in. The odds of me getting restenosis will be greatly diminished.


larry
where is the proof of that.
User avatar
drsclafani
Family Elder
 
Posts: 3132
Joined: Fri Mar 12, 2010 4:00 pm
Location: Brooklyn, New York

Postby drsclafani » Sun Jun 13, 2010 4:54 pm

makkie wrote:
drsclafani wrote:we all start by seeing and treating high lesions but mostly what we end up with is believing that the low stenoses are the real culprits

Somehow i think zamboni is right. The IVUS often shows that these higher narrowings are phasic. I hope yours is not and that the treatment will now start to improve things


Dear Dr. Sclafani,
I should like to ask you 3 questions regarding your remarks:

1) Does 'we all start by seeing and treaating the high lesions' mean that these lessions are easier to discover than the low stenosis, which you think are the real culprits.

the low lesions near the entry of the jugular vein into the chest are where most of the real lesions are. Many of the high lesions are physiologic and go away after the lower narrowings are fixed
2) Can you please say somthing more specific about what is high and what are low stenosis. I mean the location.

a high lesion is anything in the upper half of the vein. most of the lesions are near the junction with the subclavian vein in the chest behind the clavicle.
3) Can you please explain what you mean with 'the higher narrowings are phasic'. I looked up phasic in the dictionary but could find what it means in this context.

phasic means it is a phase in the filling of the vein. because there is obstruction lower down, most of the blood flow bypasses the jugular vein. without fluid to fill the jugular vein, it remains collapsed. Fill the tank and it swells to a normal size

I should like to inform you that in The Netherlands and Germany there are now 2 private clinics with German doctors who say they treat CCSVI for MS. I have compared prices with other treatments like in Poland and there is not much difference. Most insurance companies are not willing to pay anything, at least not in The Netherlands.

Here are the links for both clinics:
http://www.ccsvi-online.com/ for PrivateScan
http://www.prescan.nl/nl/onderzoeken/onderzoek-ccsvi (PreScan only in Dutch)

Thank you for the wonderfull efforts you made to inform us all on this matter.


i am concerned with the quality of every operation setting up around the world now. No specific operation is being discussed but i am unclear of their motivations and training.

I asked robbi (roberto galeotti, Zamboni's IR) what was the minimum number of cases before he started to feel comfortable and he thought about 30-50. And he is a very experienced IR with 25 years of experience in angioplasty and stenting. That is my opinion as well.

So i stand by my original statement that this was safe. but i want to caution more about the diagnostic difficulties

I have been sent a lot of CDs with images that I would consider non-diagnostic or inferior or just not meeting criteria described by zamboni in his papers.

Be careful. there is no regulation at all. no criteria, standards or credentialing. you are all in choppy waters
User avatar
drsclafani
Family Elder
 
Posts: 3132
Joined: Fri Mar 12, 2010 4:00 pm
Location: Brooklyn, New York

Re: I decided in December to have stents put in.

Postby larmo » Sun Jun 13, 2010 4:58 pm

drsclafani wrote:
larmo wrote:I decided in December to have stents put in. The odds of me getting restenosis will be greatly diminished.


larry
where is the proof of that.


I'm just guessing but from the hundreds of anecdotal posts I've read the restenosis didn't occur when stents were used. Seems like common sense to me to go with what works not what works mostly.
User avatar
larmo
Family Member
 
Posts: 57
Joined: Sun Feb 14, 2010 4:00 pm

Re: CCSVI #1 in Portugal. Some questions.

Postby drsclafani » Sun Jun 13, 2010 4:58 pm

mike70 wrote:Dear Dr. Sclafani,

In about two weeks I believe I'll be the first patient to be treated here in Portugal. My Dr is a very experienced Phd Interventional Radiologist who has already done me a venography and found out that both my jugulars and azygos have stenosis. I've read a lot about this procedure and I believe that I'm well informed. But I still have doubts concerning the use of stents. He said that he will use one on my left jugular (is almost blocked) and perform ballooning on the right and azygos. I've never ever found anything about ballooning the azygos, but I know that is one of the veins Dr Zamboni points as problematic. Can you please enlighten me about the azygos ballooning.

Thank you very much


i totally agree with dr zamboni on this. I would not stent the first time i treat anyone unless angioplasty fails. (maybe twice)
azygos ballooning works very well and dr zamboni's report clearly suggests that balloon dilation is quite effective and durable in the azygous vein
User avatar
drsclafani
Family Elder
 
Posts: 3132
Joined: Fri Mar 12, 2010 4:00 pm
Location: Brooklyn, New York

Postby drsclafani » Sun Jun 13, 2010 5:01 pm

girlgeek33 wrote:
drsclafani wrote:its almost six am and I am on a line at airport. I will go thru most important questions of week and respond to them. And about 1000 emails on sunday. If your question isn't answered. Ask it again after tuesday. I will announce irb as soon as I know the update


Don't forget to get some well deserved rest!

Have any thoughts on the NMSS grants awarded for studies that only perform testing? No funds granted for treatment in North America! And the funds are for the next 2 years!


a waste of time if only diagnostic.
would love to see the study protocols to determine their relevance
User avatar
drsclafani
Family Elder
 
Posts: 3132
Joined: Fri Mar 12, 2010 4:00 pm
Location: Brooklyn, New York

Postby drsclafani » Sun Jun 13, 2010 5:02 pm

IbRiz wrote:Hi Dr Sclafani

This cutting balloon you are sometimes using - is it not risky to use? I mean - what if you perforate the vein - could the patient not risk bleeding out?

Over here (EU) we have a certain german dr, who peforms the CCSVI procedure. He has however expressed concerns about perforating the vein, causing the patient to bleed to death!

Thanks - Christian


hard to imagine someone bleeding out from a cutting balloon of a low pressure veins
User avatar
drsclafani
Family Elder
 
Posts: 3132
Joined: Fri Mar 12, 2010 4:00 pm
Location: Brooklyn, New York

PreviousNext

Return to Chronic Cerebrospinal Venous Insufficiency (CCSVI)

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users