This Is MS Multiple Sclerosis Knowledge & Support Community

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!

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.

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

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.)

drsclafani wrote: ↑Fri Jun 21, 2019 10:24 pmLet 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.

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)

NHE wrote: ↑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

It was "crippled" from the git go. Failure was a foregone conclusion.
Having the IR's run the show in a badly constructed "study" was guaranteed to fail.
For the simple reason that stenosis's are migratory. They move they're here today and gone tomorrow. They move up down and all around.
And since the only way that you ascertain this is with very frequent Imaging and that is expensive and that is why these trials will fail.
1 scan before and one scan after the procedure and then maybe a 1 month and 1 year follow-up is useless information.
If they were to scan every month for a year they would find out oh s*** these things are moving all over the place.
So explain to me how treating one moment of time is effective for re-establishing blood flow.

It may or may not be but even more than that what is causing the stenosis in the first place?

Well I can tell you it is not starting in the intima and that is what is being treated.

Then you have idiots like doctor Dake and many others that were just slamming expensive stents all up and down the veins which is really the only way to ensure that they stay open but it's also a way that you can cause great harm to the patient should they migrate.

Show me a doctor that scans frequently in any of this you won't find one I happen to know one but he's not involved in any of this IR modulated crap studies, yet I have personally witnessed him treating this condition without an invasive procedure like literally in the room while it was happening. And guess what he was doing? frequent scans monthly before in the lead-up and monthly afterwards.
It was amazing to personally witness how the stenosis would like I said migrate so all these studies that focus on treating one specific area one time are full of it and they are not going to succeed.
All these iir's need to take a chill pill basically they don't know what they're doing for the simple fact that they're not proving the case with frequent scanning I know because I read all of their stuff and I'm like wow how would you know what you don't know without him information that scanning provides.
In fact we have an ultrasound tech that is trained in this now. He is quite the expert and he is really smart and he knows what he's looking at.

In the end it all comes down to one thing and that is money plain and simple $50,000 a year Ms drugs or expensive scans ,Pharmaceuticals versus actual patient treatment, no contest.

All all of the IR's have sucked all the gravy right off of the top at the beginning and left for home it's that simple. They all saw a golden opportunity to treat every MS patient in the world and started adding up the numbers.

Yet I have personally seen and witnessed a procedure that is non-invasive that is backed up by frequent scanning that is efficacious without being invasive in fact it can be done in the doctor's office by somebody properly trained. but oh well there's no money in that so they lose interest that is the fact of the matter.

And now I get to carry around a migrated stent in my pulmonary artery for life as evidence that I do happen to know what the hell I'm talking about

As a matter of fact the excess of ballooning is causing more injury in an already compromised vein and I guarantee you the body will react to that.

Hello, long time,

I cannot think of doing anything more with CCSVI. I think in this case Dr. Semmelweiss (who was the subject of a recent Google Doodle) might have something to say, if he were alive. Some health care people have not distinguished themselves regarding CCSVI. Plus It takes a metric ton of carbon as airplane fuel to travel from one US coast to the other and back. So I couldn't fly anywhere and still face my kids, even if they were still flying.

While doctors, nurses, and medical people have been heroes fighting Covid-19, I am disappointed that I have not seen anything on use of soap to clean infected areas, like nose an mouth.

While this is not effective to completely wipe out the disease, it can help. Dilute liquid soap will clear infected mucus from eyes and nose. (Eyes must be flushed immediately.) If the soap residue is not completely flushed, it may protect the nose temporarily. There has been no statement I have seen on the physical effect of soap on the individual viri. I have not heard anything about this from anywhere.

Chris (1eye)

dlynn wrote: ↑Sat Aug 05, 2017 5:42 pm Hi CCSVIhusband, Yes Dr. Sclafani is still around. I saw him yesterday (Aug. 4th) for a CCSVI procedure, if you look on his thread at the bottom of his replies, he has an email address you can contact him at........hope this helps,
dlynn

Can someone post Dr Sclafani’s email address for me? Thanks.

Obviously I am late to the CCSVI board. I only linked up with this after reading about it in LD.

I emailed Dr Sclafani recently using the email he has in his comments here: ccsviliberation@gmail, and also sent him a private message here. I have had no replies.

I do hope he is well. It does seem strange that he has not responded at all. His contributions here have been immense.

J

IronTinaMS wrote: ↑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)

Hi Christina,

I’ve booked the clinic in Poznań for June ‘22 but I’m still dithering about going. The communication with them hasn’t been great (they go silent for long periods) and they can’t tell me where the procedure will be done - they’ve mentioned two other possible cities. There’s also the cost of $20,000€! I’m 67 now and I’m not sure it’s worth it anymore. Who knows what’s around the corner; I might not be here next year. May I ask how old you are and if you think it was worth it?

Hello

FYI there are interesting medical articles these days about Jugular Outflow Syndrome. Also Venous Eagles Syndrome. And FB groups.

Best, Violin