DrSclafani answers some questions

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

Postby costumenastional » Sun Apr 04, 2010 8:53 am

Thank you Doctor!
These images are helpful. And your explanation even more i must say.

So, in this case, if a venogram wasn't performed (i take it as all pictures concern the same patient), the problem would not have been found.
And what about that valve? How did you make it "invisible"? I mean, balloon dilatation made this possible or did you have to do something more invasive?

Anyway, i see that the problem was found low, near the subclavian vein as you said. Do you think that such a malformation would result in absense of flow or reflux higher in the jug visible via doppler? I am only asking cause all i know at this point is that flow in both my IJVs middle part sucks for some reason...
Let me clarify: in your pictures the vein looks overfilled with dye before angio and this is expected. How something like this would show up in a doppler?
Absence of flow? Invisible vein? Reflux?
D) all of the above? :)

THANK YOU SO MUCH FOR BEING HERE...
Last edited by costumenastional on Sun Apr 04, 2010 9:12 am, edited 1 time in total.
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Trained/experienced physicians important

Postby Montana » Sun Apr 04, 2010 9:10 am

I would like to underscore Dr. Sclafani’s emphasis on finding qualified/experienced/trained physicians to do your CCSVI testing and procedure. I totally understand the strong impetus to find help sooner rather than later and the willingness to take financial risks to acquire it. But, it cannot be emphasized enough that this science is new.

Our culture has become accustomed to medical wonders: transplants, heart surgeries and miraculous repairs of broken body parts. But those procedures were all in developmental stages at some point with more questions than answers, just as CCSVI is today. Performing the MRI’s/MRV’s and ultrasounds, then reading them for CCSVI is still an emerging science demanding a very high level of skill and experience.

In my search for help, I personally contacted the head of the imaging department at one proprietary facility who told me that they had done enough CCSVI testing to know that Dr. Zamboni’s statistics were inflated. (Red Flag!) He told me their results to date showed a positive occurrence of stenosis among MS patients to be no more than 6%. Nevertheless, they were willing to test me for a hefty fee. In fact, they were promoting this service and offered me a date that week. I think the incident helps to point out some pitfalls as well as the very difficult task of acquiring adequate images and then reading them properly. (Sorry, I won’t divulge the name of the facility. But, it’s important that you ask appropriate questions when you do your inquiries.)

Dr. Sclafani’s patients are very fortunate. I am looking forward to the day when more highly qualified physicians like him with compassion and “fire in the belly” unlock the mysteries of this disease.

You can do your part by assimilating the accurate information that will soon be available on www.CCSVI.org. Use that knowledge to become an advocate in your community. The word will spread and one day enough trained specialists will rise to the challenge to help us all and usher in a new era of excellence for testing and treating CCSVI. Imagine!
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Postby HappyPoet » Sun Apr 04, 2010 9:28 am

respectfully deleted
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Postby drsclafani » Sun Apr 04, 2010 12:02 pm

So, in this case, if a venogram wasn't performed (i take it as all pictures concern the same patient), the problem would not have been found.
And what about that valve? How did you make it "invisible"? I mean, balloon dilatation made this possible or did you have to do something more invasive?


that is correct, it wouldnt have been made UNTIL a venogram. The valve was no longer visible after angioplasty because the contrast injected flushes quickly out of the vein and was not trapped behind the flow resistance
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Postby magoo » Sun Apr 04, 2010 12:13 pm

Hi Dr. Sclafani,
First, I want to say I was moved when you talked about CCSVI as "our" cause. It is wonderful to have another caring doctor on our team. Thanks.
If according to your theory about high stenosis not being real, why would someone (like myself) have such improvement after stenting the jugulars at the C-1, C-2 area? My diagnosis of cyanotic lesions bilaterally at the point just below the jugular bulb as it exits the skull and the remainder of veins in the head and neck, including azygous, unremarkable, leaves me scratching my head when I read your take on these blockages. Could it be true that in some cases there is a true malformation of the veins this high up when none exist below? And are you conferring with Zamboni or other doctors working on CCSVI? Thank you :)
Rhonda
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Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
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Postby drsclafani » Sun Apr 04, 2010 3:46 pm

Hi Dr. Sclafani,
First, I want to say I was moved when you talked about CCSVI as "our" cause. It is wonderful to have another caring doctor on our team. Thanks.
If according to your theory about high stenosis not being real, why would someone (like myself) have such improvement after stenting the jugulars at the C-1, C-2 area? My diagnosis of cyanotic lesions bilaterally at the point just below the jugular bulb as it exits the skull and the remainder of veins in the head and neck, including azygous, unremarkable, leaves me scratching my head when I read your take on these blockages. Could it be true that in some cases there is a true malformation of the veins this high up when none exist below? And are you conferring with Zamboni or other doctors working on CCSVI? Thank you
Rhonda


Dear rhonda
i am happy for you. I can think of several explanations


1. I am wrong
2. your narrowing would have been nondistensible on IVUS and I would also have stented
3. placebo
4. are you sure there was no lesion that got angioplastied lower down?
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Postby eric593 » Sun Apr 04, 2010 3:58 pm

Dr. Sclafani,

I'm not sure if this has been asked of you already (please ignore it if it has). Forgive me for the length of this, I really hate to take up your time given how much you are doing for us MSer's, both here, and clinically. It is appreciated so much.

For many of the people who are describing their post-liberation tx experience, I see a trend towards people reporting initial vague symptom improvements, but often a return of these same symptoms shortly thereafter. This excludes the warming of the feet which seems to be a common experience but isn't traditionally described as a typical neurological MS symptom. It seems to me that temperature in feet fits into a vascular paradigm much more easily.

To my non-medical "ear", these general symptom improvements then regression really seem to scream "placebo" because of the subjective nature of the symptom severity, an improvement in only "degrees" (i.e., "I stayed up later than normal", "I walked further than normal", etc.) versus absolute or objective improvements (i.e., no longer a Babinksi sign). I also note that people really seem to be trying hard to ignore symptom regression when it occurs or seem very selective in ignoring/failing to acknowledge those symptoms that remain the same. I completely understand when people want so badly to have treatment "work" that it becomes very hard for them to even admit that they might not be feeling "better" off afterwards. That seems natural to me, but it still falls into a placebo reaction by the selectivity in which they assess their health. Of course, there could still be a stabilization in their disease afterwards regardless of not seeing any symptom improvement and for many of us, that would be enough. For most though, it's far too early to tell especially given the typical fluctuations and unpredictability in disease progression.

I completely understand how people's perspective may be distorted, I imagine my own would be too if I underwent treatment, it's only natural. There is a defensiveness in people when the word "placebo" is used which causes me to be even more concerned about its effect on people and their health assessment when they don't want to even acknowledge how strongly a role it plays in something like this. But to me, it's palpable because I can FEEL their disappointment when symptoms seem to return or not change, or, G-d forbid, even worsen. They just do not want to believe it could be true.

In your experience, have you found it typical that there is no change in health afterwards outside of the increased temperature in feet? Are you undertaking a neurological exam before and after, and if so, do you see any differences?

Are you finding a lot of the patients returning to you soon after believing that an occlusion has returned? Is it a frequent occurrence that you are finding that blockages ARE returning following treatment? Given the frequency that you are now performing treatment on MS patients, are you finding any patterns of anything emerging, good or bad, of any kind?

Finally, given the # of healthy controls in the studies who apparently had blockages, would you recommend treatment of a blockage in a patient who is not reporting any adverse symptoms from the blockage and who is otherwise healthy? Outside of a venogram, would any of these blockages even have been found without using the particular specialized method of scanning that Drs. Simka and Haacke described?

Thank you so much! I am trying hard to maintain objectivity and to be able to look at the risks/benefits with as critical an eye as possible. I don't want to get caught up in the hype or the excitement and it's important to me to be as critical as possible about what treatment really does for people and what we can realistically expect from it.
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Postby magoo » Sun Apr 04, 2010 4:09 pm

Thank you. I am really happy for me too! :)
There was nothing lower for me. I am almost 6 months post procedure and if this is placebo, I hope my mind never quits tricking my body. :lol: Seriously, how long can the placebo affect continue?
I have had substantial improvements and they continue to amaze my friends and family. I do, however experience a few symptoms when I have a "bug". Mostly minor tingling, numbness and stiffness in my extremities which does completely resolve once I've gotten better.
Here's another question for you...Do you know why some symptoms would return when the immune sysyem is active?
We are all so different and there is so much to learn, so thank you again for using your talents to figure us out!!!
Rhonda
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
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Postby drsclafani » Sun Apr 04, 2010 4:10 pm

And are you conferring with Zamboni or other doctors working on CCSVI? Thank you
Rhonda


yes, i am in periodic contact with drs zamboni, andreotti, salvi, haacke, zivadinov, omari, dake, McDonald, Vogl, Simka. we all share this passion for the work
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Postby drsclafani » Sun Apr 04, 2010 4:14 pm

Thank you. I am really happy for me too!
There was nothing lower for me. I am almost 6 months post procedure and if this is placebo, I hope my mind never quits tricking my body. Seriously, how long can the placebo affect continue?
I have had substantial improvements and they continue to amaze my friends and family. I do, however experience a few symptoms when I have a "bug". Mostly minor tingling, numbness and stiffness in my extremities which does completely resolve once I've gotten better.
Here's another question for you...Do you know why some symptoms would return when the immune sysyem is active?
We are all so different and there is so much to learn, so thank you again for using your talents to figure us out!!!
Rhonda


Thank you rhonda. this is very helpful to me
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Postby magoo » Sun Apr 04, 2010 4:20 pm

Dr. Sclafani,
I just wanted to quote my post op notes from Dr. Dake:
The lower segments of the jugular were interrogated as were the valves of the confluence of the subclavian veins. They appeared normal without significant lesions or gradients. The azygos vein was catheterized, and no lesions or gradients were recorded.
Thanks again!!
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
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Postby drsclafani » Sun Apr 04, 2010 4:23 pm

in your experience, have you found it typical that there is no change in health afterwards outside of the increased temperature in feet? Are you undertaking a neurological exam before and after, and if so, do you see any differences?


I have been doing this for too short a time to have any meaningful impression about the durability of the findings. We await a six month neurological assessment to determine whether there has been meaningful improvements.

There have been other common early assertions of patient improvement, also rather generalizable, namely increased clear thinking and vision.

I remain skeptical myself.

I am performing procedures and learning how to identify and treat flow reduction problems. I am beginning to see patterns of disease, and patterns of solutions and anticipate difficulties. I am not yet satisfied that my techniques are as good as they can be.

I would expect that 2-3 years will be needed to reach a high satisfaction rate with my technhiques and thus outcomes.
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more questions

Postby cervin » Sun Apr 04, 2010 4:28 pm

first, i want to echo the gratitude form all of the TIMS people. you are a good man and kind person to answer our questions. Thank you.

My question, i pose with some trepidation, because i kinda feel like i am being a baby. I just returned from Poland last week. While i am deeply indebted to Euromedic and i enjoyed my stay there, i feel like the communication i had with the doctor and my understanding of what was going on was sub-par at best, and as such i don’t feel confident about the diagnosis.

I will explain, I had my MRV on the evening of the 23rd. On the morning of the 24th I went to the hospital for the procedure. After i was checked in, Dr. Ludyga came into my room and told me they would be coming to get me in a minute and did i have any questions. i asked if i was even a candidate for the procedure. he said he wouldn’t know until i was in the procedure (???).

Then he left. The nurses came to get me, during the transfer i was almost dropped. This scared me as i can not walk, i don’t speak Polish (the nurses don’t speak English), and things where happening really fast. I mention the that i was scared because it resulted in me crying, which resulted in them giving me something to relax, i think. what i know is i was knocked out. i woke up a little during the procedure, and the doctor told me that he used a balloon on my left jugular, but it was minor.

Because i was knocked out, that is the last i ever spoke to the doctor about the procedure. He spoke to my friend who was there with me, but she has no idea about all of this stuff and she was not much help in relaying what he said. I never had a Doppler, and i really have no idea what i did have. I have written these questions to the clinic in Poland and no one has responded.

I know you were not there, but i thought maybe you would be able to shed some light on how he would diagnose once in the procedure and confirm that a Doppler is not necessary.
You starting to see why i kinda feel like a baby...
Thanks
-ceci
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Postby drsclafani » Sun Apr 04, 2010 4:30 pm

Are you finding a lot of the patients returning to you soon after believing that an occlusion has returned? Is it a frequent occurrence that you are finding that blockages ARE returning following treatment? Given the frequency that you are now performing treatment on MS patients, are you finding any patterns of anything emerging, good or bad, of any kind?


several of my earliest patients are coming back before six months by our design. My techniques have progressed so greatly that I know i underdiagnosed narrowings, and undertreated. i expect to be more aggressive going forward.

what i have noticed is my confidence is increasing greatly. The small balloons recommended by dr zamboni have given way to larger balloons. I have added cutting balloon techniology and i have come to recognize the fusion of valve leaflets that surely do well with cutting balloon. I have changed the imaging projections used to assess the azygous vin problems that were unrecognized in my early experience. I h ave changed my anticoagulation profile. I have made efforts to better care for out of towners here for a few days.
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Postby eric593 » Sun Apr 04, 2010 4:30 pm

Thanks. I wish I had your knack for succinctness. :)

What you are learning is definitely beneficially impacting the future treatment course for CCSVI. We are all very excited as this unfolds before our very eyes. Thanks again.
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