DrSclafani answers some questions

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

Postby drsclafani » Wed Apr 28, 2010 3:47 pm

pklittle wrote:Dr Sclafani,

Thank you for giving me HOPE. I have SPMS and have been told by my doctor there is nothing that can be done, there is no effective therapy, and that the CCSVI theory is all wet. Now I am so thankful to be on your list, which I am sure is a mile long now.

Thank you for all you are doing!

Pam


Image


i hope we can rain on his parade some day
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Postby ozarkcanoer » Wed Apr 28, 2010 4:00 pm

Dr Sclafani, You ROCK !!! LOL

I wish I could get on your list... but I am doing my best to get recognition for CCSVI in St Louis. I follow your posts with great interest.

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Postby ssmme » Wed Apr 28, 2010 7:13 pm

Marcia, i have a question for you. what is it like to care for triplets in the face of MS


Wow, that's a tough question to answer. My mantra since they were itty bitty is "Nothing to it just do it" repeated over and over again. Especially when feedings happened every 3 hours and took at least an hour to complete if I had help.

I cried last week when one of them asked why I couldn't take them for a walk and why I always say no when they want to ride their bikes with me. Seven year olds just blurt it out. They think I don't like them enough to do these things with them.

Maybe following recovery from a hopefully soon to be scheduled liberation procedure I can dust off my bike, fill the tires back up, and take a ride with them.

Thanks for asking,
Marcia
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Postby hopeful2 » Wed Apr 28, 2010 9:31 pm

i am currently undergoing IRB review of a 200 patient safety trial in preparation for a larger randomized trial. The purpose of these research efforts is to give neurologists the evidence they want to refer patients for the liberation procedure and for insurers to be required to provide payments for these procedures.


Hi Dr. Sclafani. My question is: Will the 200 patient safety trial and the larger randomized trial provide testing and venogram procedures for all participants? In an earlier post you said it didn't seem feasible to do a placebo-controlled trial given the ethical considerations---so I'm wondering if everyone would get what you call the "Gold Standard"?

Hopefully your IRB proposal will sail through smoothly and get approved (not needing more revisions or rewrites)! Thanks for everything you're doing---hugs :D

Patrice
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Re: DHHS

Postby hannakat » Wed Apr 28, 2010 9:48 pm

drsclafani wrote:i do not think so, it is a hospital issue
momentum is growing

patience dear patients


Thank you Dr. S.! "Patience dear patients" made me cry! Compassion streams out of your words and gives such hope! Thank you ~ thank you!
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Re: My Test Results - Barrie, Ontario, Canada

Postby Sotiris » Wed Apr 28, 2010 10:02 pm

patientx wrote:Is this another way of saying that in someone with CCSVI, the jugular veins don't open as much when lying down, compared to a normal person? If so, is this really a good criteria? In a person, couldn't the veins be open when supine and just not collapse when standing (or widen a little), still resulting in a negative delta?
It has to do with haemodynamics, i.e. for the veins to widen when sitting or standing there has to be a problem with the vertebral plexus and/or azygos vein or with the IJV's valves. So the criterion seems a good one.
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Postby kiwi » Thu Apr 29, 2010 12:05 am

Hi Dr Sclafani
Thanks for all the time you take answering all our questions. It is much appreciated, I have followed this thread from the beginning, fantastic information for us all. My husband has PPMS, full time in chair. He has been tested and found to have narrowings in veins, LIJV 10mm down to 1.7mm and RIJV 6mm down to 1.4mm. Is it safe to fly or will this put additional pressure on the veins? What are the normal parameters for veins width? Cheers
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Postby frodo » Thu Apr 29, 2010 2:48 am

Dear Doctor,

One of the usual complaints about the test in CCSVI is the lack of controls. Some of us were thinking that maybe a clinical trial could accept restenosis cases as control.

Would it be acceptable such a control case?
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Postby Robnl » Thu Apr 29, 2010 3:43 am

costumenastional wrote:
drsclafani wrote:
JOhnnybaby248 wrote:It just keeps getting better and better more results out of Kuwait
http://www.ccsvikuwait.com/Details.aspx?d=4

Dr. S. any words of in encouragement


my only comment is......

when do we abandon ultrasound and MRV?

the incidence of abnormality in MS is so high, that it has become irrelevant to have a noninvasive tesst to screen. unnecessary cost and inappropriate to deny the gold standard to anyone.

I fear it is just a method to delay treatment.

only reason to do noninvasives is to get enough experience to use it for followup screening


just making sure everybody sees that.


I do not agree, in my case i had no Doppler because the venogram was clear (stuck valve in LJ) So...no scan in vertical position. I suspected that there was something wrong in the RJ which is confirmed by a Doppler a few weeks later.

Robert
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Postby drsclafani » Thu Apr 29, 2010 5:29 am

Robnl wrote:
costumenastional wrote:
drsclafani wrote:
JOhnnybaby248 wrote:It just keeps getting better and better more results out of Kuwait
http://www.ccsvikuwait.com/Details.aspx?d=4

Dr. S. any words of in encouragement


my only comment is......

when do we abandon ultrasound and MRV?

the incidence of abnormality in MS is so high, that it has become irrelevant to have a noninvasive tesst to screen. unnecessary cost and inappropriate to deny the gold standard to anyone.

I fear it is just a method to delay treatment.

only reason to do noninvasives is to get enough experience to use it for followup screening


just making sure everybody sees that.


I do not agree, in my case i had no Doppler because the venogram was clear (stuck valve in LJ) So...no scan in vertical position. I suspected that there was something wrong in the RJ which is confirmed by a Doppler a few weeks later.

Robert


Thank you. Well, did you have a second venogram that confirmed that problem on the right. And did you have a second treatment on the right yet?

Screening is always about finding a reason to treat or not treat. No need to do a screening test if there is always a reason to do the invasive more definitive diagnostic test at the time of treatment.

There will always be false negative results of every test. One case where ultrasound showed a finding that was missed on venography does not yet change my mind about my opinion. I wish i could see the venogram blinded (pun) to the results to see if i agree with the person who did the venogram

As i say, still lots to discover.
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Postby drsclafani » Thu Apr 29, 2010 5:33 am

frodo wrote:Dear Doctor,

One of the usual complaints about the test in CCSVI is the lack of controls. Some of us were thinking that maybe a clinical trial could accept restenosis cases as control.

Would it be acceptable such a control case?


Interesting thought. As long as those who failed accepted no additional treatment. When one has a dramatic improvement that one loses during restenosis, would one be willing to not try again?

But thanks, larmo's army to the rescue again!
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Postby Robnl » Thu Apr 29, 2010 6:23 am

drsclafani wrote:
Thank you. Well, did you have a second venogram that confirmed that problem on the right. And did you have a second treatment on the right yet?

Screening is always about finding a reason to treat or not treat. No need to do a screening test if there is always a reason to do the invasive more definitive diagnostic test at the time of treatment.

There will always be false negative results of every test. One case where ultrasound showed a finding that was missed on venography does not yet change my mind about my opinion. I wish i could see the venogram blinded (pun) to the results to see if i agree with the person who did the venogram

As i say, still lots to discover.


May 27th i will have MRI and Doppler, we'll see what pops up :wink: \
Then a possible treatment.

after 1st treatment (stent to open the stuck valve) i show some improvents, but the physical things like walking are very unstable..sometimes walking 12 meters by myself, most of the time very difficult to walk.....and i did not have the well known warmth.

i'm curious what the opening of the RJ will bring.

I'll keep you informed...

Robert
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Postby mshusband » Thu Apr 29, 2010 6:30 am

Dr. Sclafani:

I know I've read the question before but am not sure if I've seen the answer.

If you have a bad vein on one side, say the left. Is it better to sleep left side up, or left side down (if you're a side sleeper)? Or on your back? Or does it not make a difference?

If it wouldn't make a difference, any insight as to why?
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Postby drsclafani » Thu Apr 29, 2010 6:53 am

Robnl wrote:
drsclafani wrote:
Thank you. Well, did you have a second venogram that confirmed that problem on the right. And did you have a second treatment on the right yet?

Screening is always about finding a reason to treat or not treat. No need to do a screening test if there is always a reason to do the invasive more definitive diagnostic test at the time of treatment.

There will always be false negative results of every test. One case where ultrasound showed a finding that was missed on venography does not yet change my mind about my opinion. I wish i could see the venogram blinded (pun) to the results to see if i agree with the person who did the venogram

As i say, still lots to discover.


May 27th i will have MRI and Doppler, we'll see what pops up :wink: \
Then a possible treatment.

after 1st treatment (stent to open the stuck valve) i show some improvents, but the physical things like walking are very unstable..sometimes walking 12 meters by myself, most of the time very difficult to walk.....and i did not have the well known warmth.

i'm curious what the opening of the RJ will bring.

I'll keep you informed...

Robert


Robert
i would love to see the first venogram if you could send me a copy of the pictures. I want to see if it is truly normal

i also do an intravascular ultrasound when I do the venogram, through a ultrasound probe i put inside the blood vessel. Perhaps it is more necessary that i have believed in the past

salvatore
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Postby drsclafani » Thu Apr 29, 2010 6:59 am

hopeful2 wrote:
i am currently undergoing IRB review of a 200 patient safety trial in preparation for a larger randomized trial. The purpose of these research efforts is to give neurologists the evidence they want to refer patients for the liberation procedure and for insurers to be required to provide payments for these procedures.


Hi Dr. Sclafani. My question is: Will the 200 patient safety trial and the larger randomized trial provide testing and venogram procedures for all participants? In an earlier post you said it didn't seem feasible to do a placebo-controlled trial given the ethical considerations---so I'm wondering if everyone would get what you call the "Gold Standard"?

Hopefully your IRB proposal will sail through smoothly and get approved (not needing more revisions or rewrites)! Thanks for everything you're doing---hugs :D

Patrice


i do not know details of all the trials. Some are non-invasive diagnostic trials trying to confirm association of ccsvi and ms. These do not generally involve the Gold Standard of catheter venography. others are therapeutic and include the diagnostic questions and the safety and treatment trials. They all have at least the gold standard. My proposal indicates that I do not absolutely require noninvasives but prefer it and am willing to use studies done elsewhere if they meet our standards. I am not aware of any trials that are randomized prospective treatment trials yet.
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