DrSclafani answers some questions

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

Postby drbart » Mon May 31, 2010 1:32 pm

Donnchadh wrote:When you resume the liberation procedure (note I am being positive here and saying WHEN and not IF :lol: ) will your IRB allow the use of stents or are you going to continue not using them?

Judging from the narratives of patients, the decision whether or not to use a stent seems to be quite a tough call.


dr S,

i'd like to ask a related question, and i want to phrase this without it sounding like a request for a blanket assertion.

we may be faced with the stent-or-not decision soon, and i'm wondering what your experience has been regarding criteria for stenting the azygos? i *think* i remember reading someone in these 114 pages that you had seen good results without stenting.

as you know, dake in his IR address says his experience has been that azygos issues have needed stenting, in particular for the "candy wrapper" case.

our plan is obviously to defer to the experience of our liberator. i'm just being curious here.
User avatar
drbart
Family Elder
 
Posts: 103
Joined: Tue Apr 06, 2010 3:00 pm

Advertisement

Postby L » Mon May 31, 2010 3:38 pm

Another question - what would you say to a sceptical neurologist if you had a two minute appointment with him or her to try and persuade him of the merits of CCSVI? In one or two sentences because that's only how much they could stand hearing about it. : )

(I have no idea of my neurologist's opinion on the matter, although when I spoke to him about it six months ago they were absolutely unconvinced. He is very enthusiastic and dedicated to the patient though.)

Thanks!
User avatar
L
Family Elder
 
Posts: 946
Joined: Sat Oct 20, 2007 3:00 pm
Location: The United Kingdom

Postby Cece » Mon May 31, 2010 3:53 pm

Donnchadh wrote:Judging from the narratives of patients, the decision whether or not to use a stent seems to be quite a tough call.

There was at least once when it sounded as if he had made up his mind to use a stent on a particularly odd ballooning pocket of a valve:

drsclafani wrote:
What if the IR encounters an IJV valve that has formed a pocket and is ballooning up restricting flow...what is the approach to correct the problem?"


Why do i think this is a known lurker who wants to know how i will treat the second time around. Nice try!

This is an unusual finding that amazed dr zambni when i showed it to him. I wish i had an easy answer, we would not have to do a second procedure if i did!

i think that a stent makes the most sense right now since all the surgeons i offered this vein to, demured with thanks. it is kind of a valve that formed a pocket and that pocket balloons out on ivus to occlude the main lumen. I think we need to permanently compress the valve against the wall.

If i knew how to show pictures here, i would.

sorry madame lurker....we will find out in a few weeks


Did we ever get to see the picture? Did you find out in a few weeks or did the IRB process intervene? And who is madame lurker...oh the mysteries! :)
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
Cece
Family Elder
 
Posts: 8989
Joined: Mon Jan 04, 2010 4:00 pm

Postby bestadmom » Mon May 31, 2010 4:31 pm

Cece,

It's no mystery. I am not madame lurker, but Dr .S thought I put Lavonna up to posing the question on my behalf.

I've got the odd pocket/septum that kept clotting closed, but Dr. S will not be using stents for the group when he gets IRB approval. Chances are good that for some of us, stents will be necessary, but Dr. S will not be using them.
User avatar
bestadmom
Family Elder
 
Posts: 722
Joined: Mon May 18, 2009 3:00 pm
Location: CT

Postby drsclafani » Mon May 31, 2010 6:20 pm

Donnchadh wrote:Dr. Sclafani:

When you resume the liberation procedure (note I am being positive here and saying WHEN and not IF :lol: ) will your IRB allow the use of stents or are you going to continue not using them?

Judging from the narratives of patients, the decision whether or not to use a stent seems to be quite a tough call. I would consider "conservative practice" to do a balloon procedure first, hoping that would be sufficient to solve the problem. While that would clearly be the best outcome, the high rate of re-stenosis would seem that sometimes something more was needed, like a stent in those cases.

I would like to add my thanks to the others for giving us your time and expertise in answering these questions.

Donnchadh



WHEN the IRB approves my proposal, I will post it on my website and will move transparently and let the chips fall where they may.

my proposal calls for reangioplasty for the first episode of restenosis and consider a stent for a subsequent restenosis. AT that time the patient falls out of protocol.

Thus i should start writing my next protocol now for submission to the IRB
eh?
User avatar
drsclafani
Family Elder
 
Posts: 3132
Joined: Fri Mar 12, 2010 4:00 pm
Location: Brooklyn, New York

Postby drsclafani » Mon May 31, 2010 6:23 pm

drbart wrote:
Donnchadh wrote:When you resume the liberation procedure (note I am being positive here and saying WHEN and not IF :lol: ) will your IRB allow the use of stents or are you going to continue not using them?

Judging from the narratives of patients, the decision whether or not to use a stent seems to be quite a tough call.


dr S,

i'd like to ask a related question, and i want to phrase this without it sounding like a request for a blanket assertion.

we may be faced with the stent-or-not decision soon, and i'm wondering what your experience has been regarding criteria for stenting the azygos? i *think* i remember reading someone in these 114 pages that you had seen good results without stenting.

as you know, dake in his IR address says his experience has been that azygos issues have needed stenting, in particular for the "candy wrapper" case.

our plan is obviously to defer to the experience of our liberator. i'm just being curious here.



remember drbart
i havent been doing this long enough to be too assertive about when to stent. I cannot describe good results over just a couple of months either

I am going to try a second stenting first before i stent

i am going to visit dr Z next week (might as well use my jail time to good advantage) and see some of Dr Galeotti's re-do procedures
User avatar
drsclafani
Family Elder
 
Posts: 3132
Joined: Fri Mar 12, 2010 4:00 pm
Location: Brooklyn, New York

Postby drsclafani » Mon May 31, 2010 6:26 pm

L wrote:Another question - what would you say to a sceptical neurologist if you had a two minute appointment with him or her to try and persuade him of the merits of CCSVI? In one or two sentences because that's only how much they could stand hearing about it. : )

(I have no idea of my neurologist's opinion on the matter, although when I spoke to him about it six months ago they were absolutely unconvinced. He is very enthusiastic and dedicated to the patient though.)

Thanks!


I would thank him for his dedication and his skepticism. I would ask him to keep an open mind. I would also ask him to be unbiased against liberation too.

And tell him he better pay attention and ask good questions and learn about this, because you need him to do that.
User avatar
drsclafani
Family Elder
 
Posts: 3132
Joined: Fri Mar 12, 2010 4:00 pm
Location: Brooklyn, New York

Postby drsclafani » Mon May 31, 2010 6:29 pm

Cece wrote:
Donnchadh wrote:Judging from the narratives of patients, the decision whether or not to use a stent seems to be quite a tough call.

There was at least once when it sounded as if he had made up his mind to use a stent on a particularly odd ballooning pocket of a valve:

drsclafani wrote:
What if the IR encounters an IJV valve that has formed a pocket and is ballooning up restricting flow...what is the approach to correct the problem?"


Why do i think this is a known lurker who wants to know how i will treat the second time around. Nice try!

This is an unusual finding that amazed dr zambni when i showed it to him. I wish i had an easy answer, we would not have to do a second procedure if i did!

i think that a stent makes the most sense right now since all the surgeons i offered this vein to, demured with thanks. it is kind of a valve that formed a pocket and that pocket balloons out on ivus to occlude the main lumen. I think we need to permanently compress the valve against the wall.

If i knew how to show pictures here, i would.

sorry madame lurker....we will find out in a few weeks


Did we ever get to see the picture? Did you find out in a few weeks or did the IRB process intervene? And who is madame lurker...oh the mysteries! :)


cece

that dialogue seems like years ago. Yes, the IRB process intervened two days before retreatment.

and i still do not know the right move. I am reluctant to use stents at this time, but we shall see once the curtain lifts
User avatar
drsclafani
Family Elder
 
Posts: 3132
Joined: Fri Mar 12, 2010 4:00 pm
Location: Brooklyn, New York

Postby drsclafani » Mon May 31, 2010 6:32 pm

bestadmom wrote:Cece,

It's no mystery. I am not madame lurker, but Dr .S thought I put Lavonna up to posing the question on my behalf.

I've got the odd pocket/septum that kept clotting closed, but Dr. S will not be using stents for the group when he gets IRB approval. Chances are good that for some of us, stents will be necessary, but Dr. S will not be using them.


bestadmom,
you are not part of my IRB because you were already treated. But you are correct, stents will come as part of another IRB or an addendum. If necessary, of course. But positive thinking eh?
User avatar
drsclafani
Family Elder
 
Posts: 3132
Joined: Fri Mar 12, 2010 4:00 pm
Location: Brooklyn, New York

Postby mshusband » Mon May 31, 2010 6:53 pm

Dr. Sclafani ...

WHEN you get back up and running ...

Would it be of any interest to you to scan a healthy control using doppler and MRV? Heck, if it would help the science, I'd let you go invasive if you want to ...

(mainly I mean myself ... since my significant other is on your list).

Some of the criticism against CCSVI is that doctors aren't performing the same diagnostic tests on controls as they are on CCSVIers ... meaning controls don't get invasive testing or anything. I would be more than happy to have my innards checked ...

Just curious if you'd thought about that ...
User avatar
mshusband
Family Elder
 
Posts: 249
Joined: Sun Jan 24, 2010 4:00 pm
Location: Pittsburgh, PA, USA

Postby NZer1 » Mon May 31, 2010 8:11 pm

Hi Dr.S. Keep up the good work and thanks. Question number 93 on our list of survey questions to you. joke. :lol:
I have a question for you. If I had been treated by you prior to shut down and if my symptoms had changed, :cry: can I see you again to find out what is happening? :? If I have restenosis can you re-treat me? When could re-treatment happen? :roll:
User avatar
NZer1
Family Elder
 
Posts: 1516
Joined: Thu Feb 18, 2010 4:00 pm
Location: Rotorua New Zealand

Postby Cece » Mon May 31, 2010 9:34 pm

NZer1 wrote:Hi Dr.S. Keep up the good work and thanks. Question number 93 on our list of survey questions to you. joke. :lol:
I have a question for you. If I had been treated by you prior to shut down and if my symptoms had changed, :cry: can I see you again to find out what is happening? :? If I have restenosis can you re-treat me? When could re-treatment happen? :roll:

Earlier this month, he was asking for a compassionate exception from the IRB, so that he could treat a previously treated patient who was in much the same situation as you describe. But his request was not granted.
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
Cece
Family Elder
 
Posts: 8989
Joined: Mon Jan 04, 2010 4:00 pm

Postby girlgeek33 » Tue Jun 01, 2010 8:42 am

Today I learned of someone, a friend, that lost her battle with this MonSter. She was only 45. She had been in the hospital for several weeks on saline and steroids. Aren't Doctors supposed to do everything they can to help a patient live? Shouldn't an MS patient at that stage be able to be tested in the hospital in order for Doctors to all they can to preserve life? Isn't the possibility of the vascular connection enough at that point in the course of this disease for them to test and potentially treat? I am disgusted that we as MSers are constantly given minimal care because we have MS and things are just blamed on our disease!!! When did we become second class citizens?!
User avatar
girlgeek33
Family Elder
 
Posts: 150
Joined: Thu Nov 26, 2009 4:00 pm
Location: NJ

Postby HappyPoet » Tue Jun 01, 2010 10:35 am

girlgeek33 wrote:Today I learned of someone, a friend, that lost her battle with this MonSter. She was only 45. She had been in the hospital for several weeks on saline and steroids. Aren't Doctors supposed to do everything they can to help a patient live? Shouldn't an MS patient at that stage be able to be tested in the hospital in order for Doctors to all they can to preserve life? Isn't the possibility of the vascular connection enough at that point in the course of this disease for them to test and potentially treat? I am disgusted that we as MSers are constantly given minimal care because we have MS and things are just blamed on our disease!!! When did we become second class citizens?!

<tears>
User avatar
HappyPoet
Family Elder
 
Posts: 1401
Joined: Thu Jul 09, 2009 3:00 pm

Postby NZer1 » Tue Jun 01, 2010 2:29 pm

This is not intended to be negative or in any way putting down CCSVI or the providers of treatment.
As I follow the feedback from the lucky ones who have had treatment it is becoming obvious that it is possible multiple treatments will be required for some of us.
I am putting it out there for thought, as I for one could not afford the multiple costs.
Please don't bankrupt yourself and wait a bit longer, as the experiences of the providers is going to make a big difference. The skills and outcomes will teach all of us more about CCSVI and the best approaches to solving problems. It may not take as long as we fear!
Take care and be well.
User avatar
NZer1
Family Elder
 
Posts: 1516
Joined: Thu Feb 18, 2010 4:00 pm
Location: Rotorua New Zealand

PreviousNext

Return to Chronic Cerebrospinal Venous Insufficiency (CCSVI)

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users