Is Dr. Sclafani still around?

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.
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pukai
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Re: Is Dr. Sclafani still around?

Post by pukai » Mon Jun 24, 2019 5:19 am

Dr Sclafani,
this is the best news we have heard for quite a long time!
The (scientific) situation here in Germany concerning CCSVI is devastating. A doctor willing to treat ascertained symptoms connected with jugulars (and therefore part of CCSVI) has big problems in justifying his decision....
At the same time, knowledge about best practices which have already been gained in this field does not exist. It seems like those few physicians who are courageous enough to be interested in this field are starting in 2010 again - this is a
shameful situation.
Thank you for trying to find ways to go on helping patients and passing on your knowledge!

Marcus
P.S. We will contact you by PM soon!

ElliotB
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Re: Is Dr. Sclafani still around?

Post by ElliotB » Mon Jun 24, 2019 6:33 am

I think the fact is that at this time no one knows whether this procedure really, really works. In spite of a lot of negative info out there regarding the procedure, the most encouraging fact is that some people are being helped, people who were in pretty bad shape prior to procedure. BUT keep in mind that there are others who have had similar improvements from safer, non-surgical protocols who were also in pretty bad shape prior to their interventions. Those with the more advanced stages of MS did not have a glimmer of hope until recently.

"Yet I don't think I have read a single article/study that substantiates that the treatment really, really works."

Perhaps you can provide links to all the studies that offer proof that the procedure really works. I obviously missed them in my research.


"And when you have Zamboni himself... concluded that “the liberation treatment” for MS does not work"

Perhaps you can explain why he came to this conclusion a couple of years ago, more importantly why he has not changed his position since then and why this important fact is overlooked by everyone,

Frankly the only way I would do this procedure at this time would be IF it was a treatment choice of last resort as I am sure is the case for some that decide to go ahead with it. There are safe, non-evasive ways to accomplish the desired outcome of improved circulation with regard to the brain and spinal cord that I would try first. Which I do and have been for years. Again, to me at this time, this is ONLY a protocol of last resort.

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NHE
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Re: Is Dr. Sclafani still around?

Post by NHE » Tue Jun 25, 2019 2:46 am

ElliotB wrote:
Mon Jun 24, 2019 6:33 am
"And when you have Zamboni himself... concluded that “the liberation treatment” for MS does not work"

Perhaps you can explain why he came to this conclusion a couple of years ago, more importantly why he has not changed his position since then and why this important fact is overlooked by everyone.
Brave Dreams: An overestimated study, crippled by recruitment failure and misleading conclusions
https://www.pagepressjournals.org/index ... /7340/7175

violin
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Re: Is Dr. Sclafani still around?

Post by violin » Sun Jun 30, 2019 10:31 pm

So wonderful that you have communicated on this forum again, Dr. Sclafani. Thank you.

One thing I’ve wondered about: Fifty years ago I observed an angiogram up to the heart. Ten years ago I did not pass a heart stress test, and the cardiologist wanted me to have an angiogram. I asked our family doctor his opinion, and he thought angiogram too risky. So I did not have it.

Around five years ago I learned I was a candidate for CCSVI venoplasty. When I asked our family doctor about this, he replied it should be OK. What’s the difference, I asked. His answer was that compared to arteries, the veins are quite flexible, the blood flow slower—- much less risk.

My venoplasty gave me astonishing improvement even though it could not be fully CCSVI accomplished due to valve obstructions in and bony compression onto my jugulars. But this information about the obstructions allowed me direction that I have been working to improve, while I wait to get the advised second venoplasty.

Lots of angioplasties are done everyday at nearly every hospital. And venoplasties are safer? So why aren’t venoplasties even more common than angioplasties? Why such illogical stigma against a similar and safer procedure?

In the past, more people getting angioplasties were men, since it appeared that men got more cardiovascular problems than women.

I wonder, and excuse me gentlemen, but because MS affects more women, especially young women, isn’t there something actionable legally in this situation? A double or triple discrimination? Against a safer procedure, against women, and against ameliorating a poorly understood chronic illness?

(And to clarify. CCSVI dot org explains that “liberation” in the Italian name for CCSVI venoplasty, does not mean freedom from MS.)

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Re: Is Dr. Sclafani still around? damn right

Post by Cece » Thu Jul 04, 2019 5:40 pm

drsclafani wrote:
Fri Jun 21, 2019 10:24 pm
Let me state emphatically, that there is good basic science into the effects of venous outflow disruptions, there is good evidence of safety for these procedures

The truth is that the negative press and the witchhunting done against other caring physicians led my employer to make a business decision to stop offering the procedure at a financial loss. The company is after all a for-profit company and i found their decisions to be reasonable but devastatingly disappointing. It was an anguishing decision that I decided not to continue on alone. But my reasons were of family, of age, and of fear of vicious attacks to my person and my reputation. and it left me quite saddened and overwrought
Those are all good reasons. I am sorry you had to make a painful decision like that. And thrilled that the Poland clinic has a place for your continued contributions.

After my own CCSVI procedures, my symptoms improved so much that, this past December, my MS diagnosis got taken away. I never did have any oligoclonal bands on my spinal tap and my current neurologist never saw me a decade ago when I was ill. So his belief is that it was a one-time neurological insult of undetermined origin.

I feel great and I am very grateful.

I would like to see CCSVI treatment go from discreditation to standard of care, like the other example you mentioned, but I don't know how we get from here to there.

IronTinaMS
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Re: Is Dr. Sclafani still around?

Post by IronTinaMS » Tue Oct 15, 2019 12:18 pm

Hello all,

I wasn't sure where exactly to post this, maybe another spot is better so please let me know if I should post elsewhere too.

I had an initial venoplasty in the US at Dayton Interventional Radiology where I experienced unbelievable results.

I wanted to take a minute to talk about my experience at the CCSVI Clinic in Poznań, Poland. https://ccsvi-clinic.com/en

The team is fantastic; aides, nurses, hospitalists, vascular/interventional neurologist, specialist in neurosurgery, anesthesiologist, nutritionist, I'm sure I left someone out...

The part of the hospital where I stayed is fantastic.

They are doing research. They have an approved study. The lead researcher/physician (Dr. Wielochowski) is wonderful.

I sent imagining (ultra sounds and MRVs) ahead of time for review which helped the decision to proceed with a trip there. Side note: Great place for a good CCSVI assessment is in Phx, AZ at http://azdoppler.com/

Back to my Poland trip:

I arrived Monday, 9.Sept.2019 (was picked up from the airport) had an MRV.

Tuesday 10.Sept.19 I underwent more testing (blood, EKG, CXR) to make sure I was fit enough for procedure. I had physio as well as nutritional assessment.

Tuesday I got to meet with Dr. Dabroski (specialist in neurosugery), anesthesiologist, Dr. Sclafani and Dr. Wielochowski (lead researcher/interventional neurologist). I was able to sit and talk with Dr. Sclafani and Dr. Wielochowski for a long time. They were wonderful and spent a lot of time with me. I also met with Czarek, the founder of the clinic.

11.Sept.19 I underwent repeat ballooning of my left IJ and azygos veins. Unfortunately, my right IJ is 100% blocked (scar tissue from my initial procedure) and they weren't able to get into it at all.

Maybe most notably is they found that my left renal vein was 78% collapsed (Nutcracker Syndrome). I'm convinced this would never have been found had I not gone there. Anecdotally, Dr. Sclafani was interested to look because he's seen women with Tspine lesion having left renal vein compression.

I cannot say enough about my experience in Poland. For a very extensive review and treatment of the vascular system (as well as other aspects-nutrition, etc) it is the most ideal place.

There are very limited options for this treatment. For US/Canadian residents, Mexico looks to have an established programme but I don't think any site I've researched is looking so completely at the vascular system as well as some of the other components (nutrition, EBV, HSV, Lyme..).

Please reach out to me with any questions! I'd love to answer.

Christina (IronTinaMS)

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