DrSclafani answers some questions

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.
pelopidas
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Re: DrSclafani answers some questions

Post by pelopidas » 6 years ago

dlb wrote: David,

I would like to weigh in here if I could with a few comments. I was treated by Dr. Sclafani in July 2011. I had a terrible time wresting with the decision to have the treatment. I was diagnosed in 2005 after only 2 episodes, started Copaxone in 2006 & then have only had 1 exacerbation since. I had an EDSS of zero & I was (still am) a high functioning individual with MS. For me, the theory made so much sense because it explained all the things that I experienced for years before I started having symptoms of MS. So, the theory made sense to me, but on the other hand, I felt sooo well. It made my decision very difficult because felt like I was fixing something that wasn't broken. I am Canadian, so I went to Barrie, ON to have a doppler US to find out what that said & I met 3 of the criteria, so that helped me make the decision. The thing is, after I had a very successful treatment, I came to realize that I was having difficulties that I was not even aware of. The little things were creeping up on me slowly and over time I was just adjusting & coping. There are also things that were just a part of my life that I was experiencing long before I had MS (headaches, cold hand & feet, heat & cold intolerance). Those things I just lived with and did not know it was different for other people & could be different for me. I am so happy that I elected to seek treatment. It's early, but I really hope that improving that blood flow will help in delaying progression. That is ultimately why I made the choice. The bonus was in realizing such benefit. The shocker was that I had issues that I wasn't aware of until I had improved blood flow. Best wishes....
Deb
I 'd say the same things, more or less: i had my first procedure on June 2011 by Dr Sclafani.
I was diagnosed on 2004 and i had two big relapses during this period with motion problems on both legs. My mean EDSS was good, i was working and (i was thinking that i was) doing a lot of things.
I remember myself writing down reports for the CCSVI survey for the first time. I was unconsciously cheating on the answers, trying to prove to myself i was healthier than i really was. Or maybe i was an optimist.
Then i had the angioplasty, and then things start to improve. It was only after some time that i realized that fatigue, heat intolerance, balance issues, headaches, chronic neck pain, bladder problems, cog fog, tinnitus, dysphagia, blurred vision, depression, cold feet and legs eczema, chronic morning sniffling were more severe as i thought and they were all actually CCSVI symptoms.
During all those years I was doing some kind of bargain and i was "adjusting and coping"
Now i'm doing the survey again and the truth is revealed.
I am ready to go back to Dr Sclafani for a follow up procedure.
I know he is going to see a different person.


David, best wishes!
Last edited by pelopidas 6 years ago, edited 2 times in total.
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David1949
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Re: DrSclafani answers some questions

Post by David1949 » 6 years ago

dlb and pelopidas
Thank you for your thoughts. I appreciate your comments.

Dave

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Re: DrSclafani answers some questions

Post by Cece » 6 years ago

drsclafani wrote:Yikes!!

see how hard it is to teach this stuff.

I would have said it like this:

sensitivity of a test is the percentage of positive results that are accurately positive. in our case, the percentage of patients who get a diagnosis of ccsvi who actually have ccsvi
specificity is the percentage of negatives that are truly negative. in other words, the percentage of patients with a diagnosis of NO ccsvi who actually dont have the disease.

positive predictive value means the reliability of a positive result of the test. In other words what the odds that a positive result is accurate.
negative predictive value means the reliability of a negative result of a test. In other words the likelihood that a negative result can be relied upon as true.
Ok, got it.

What's next on the syllabus, doc? :)

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Re: DrSclafani answers some questions

Post by David1949 » 6 years ago

Considering the amount of time I've spent around this forum I should know the answer to this question but I don't. I know the catheter goes into the vein in the leg and then emerges in the jugular or azygous veins. But what other veins does it go through in-between? Does it go through the heart or does it by-pass that somehow?

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Re: DrSclafani answers some questions

Post by drsclafani » 6 years ago

David1949 wrote:Considering the amount of time I've spent around this forum I should know the answer to this question but I don't. I know the catheter goes into the vein in the leg and then emerges in the jugular or azygous veins. But what other veins does it go through in-between? Does it go through the heart or does it by-pass that somehow?
For me it goes into the saphenous vein through the external and the common iliac vein into the inferior vena cava. From there it goes into the right atrium of the heart and exist above the right atrium into the superior vena cava. From the svc in can either enter the azygous vein, or go through the right or left brachiocephalic vein into the right or left internal jugular veins extending through a hole in the skull to end in the dural sinuses

On the way out I put rhe catheter into the left renal vein, then the left ascending lumbar vein before returnig through the iliac vein and femoral vein to exit the saphenous vein
Salvatore JA Sclafani MD
Patient contact: ccsviliberation@gmail.com

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Re: DrSclafani answers some questions

Post by MsMezza » 6 years ago

Hi Dr. Sclafani,

Just wanting to ask if you've heard of pathogen interaction with CCSVI??

I have been treated 4 times in Australia - the final surgery deemed failed and IJV flow did not improve (~136mL/min bilat). So I looked for pathogen sources and investigated one that results in saphenous vein graft failure. Fast forward 5 months of intense antibiotics, my IJV flow volume rate is 500mL/min and all symptoms have ameliorated - even the ones that were present for 2.5yrs!

I look at CCSVI the same way I look at varicose veins at work. Varicose veins may have a ovarian vein source, however if the legs are treated alone - the vv's will return within months. I am not entirely convince with the truncular malformation theory as damaging/vascultis causing bacteria is seen in children too (childhood asthma in as young as 2yrs of age). I am in the process of organising a IJV stenosis swab sample for pathology purposes.

Regards,

M

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Re: DrSclafani answers some questions

Post by dlynn » 6 years ago

Hi Dr. Sclafani,
I was diagnosed, not treated (yet) with "Nutcracker Syndrome". I always read of left flank pain, which makes sense,
but my flank pain is right sided for the past four years. I did a google search "..Causes of right flank pain in a woman?" "In older women, right flank pain is more likely to indicate a vascular condition as opposed to a gynecological one." I've had many tests in the past to determine the cause but they showed nothing. Could right sided flank pain be indirectly related to NS? If not, maybe what??
Thank you

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Re: DrSclafani answers some questions

Post by Cece » 6 years ago

ok this is not so much a syllabus as a wish list!

for 2012 -
Many more images of interesting procedures. We have yet to see a planned 2 stage procedure to consider how successful this is as a technique.

Images from new IVUS that is 5x better than old IVUS.

An image of Dr. Sclafani in his university days dressed in homage to Sherlock Holmes...

A gazillion questions and participation from all of us.

No more health scares. Quick healing.

Progress on research with or without a neurologist partner.

The SIR abstracts to be presented at some other venue.

A third annual CCSVI symposium in July? Do you have time to recover before having to plan this? It's three months away, isn't it.

Abstracts on renal vein stenosis in CCSVI. Seems important to get this more widely understood and looked at.

Long-term follow-ups (up to 2 years now) on early patients.

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Re: DrSclafani answers some questions

Post by drsclafani » 6 years ago

MsMezza wrote:Hi Dr. Sclafani,

Just wanting to ask if you've heard of pathogen interaction with CCSVI??

I have been treated 4 times in Australia - the final surgery deemed failed and IJV flow did not improve (~136mL/min bilat). So I looked for pathogen sources and investigated one that results in saphenous vein graft failure. Fast forward 5 months of intense antibiotics, my IJV flow volume rate is 500mL/min and all symptoms have ameliorated - even the ones that were present for 2.5yrs!

I look at CCSVI the same way I look at varicose veins at work. Varicose veins may have a ovarian vein source, however if the legs are treated alone - the vv's will return within months. I am not entirely convince with the truncular malformation theory as damaging/vascultis causing bacteria is seen in children too (childhood asthma in as young as 2yrs of age). I am in the process of organising a IJV stenosis swab sample for pathology purposes.

Regards,

M
I have heard of this theory. I cannot discount the presence of infection but to date, the lesions found at autopsy or surgical resection do not show evidence of inflammation. Rather they seem to indicate malformations of valves, including reversed valves, elongated valves, septums, webs and duplicatins, all of which seem to indicate malformation rather than infection

I am quite willing to be wrong So go ahead with your plans to culture the valves.
Salvatore JA Sclafani MD
Patient contact: ccsviliberation@gmail.com

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drsclafani
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Re: DrSclafani answers some questions

Post by drsclafani » 6 years ago

dlynn wrote:Hi Dr. Sclafani,
I was diagnosed, not treated (yet) with "Nutcracker Syndrome". I always read of left flank pain, which makes sense,
but my flank pain is right sided for the past four years. I did a google search "..Causes of right flank pain in a woman?" "In older women, right flank pain is more likely to indicate a vascular condition as opposed to a gynecological one." I've had many tests in the past to determine the cause but they showed nothing. Could right sided flank pain be indirectly related to NS? If not, maybe what??
Thank you
There is a couple of very rare scenario that can explain right sided symptoms from anutcracker syndrome. Situs inversus of the aorta on the right side might cause symptoms on the right side. Also an ectopic right kidney might cause such a problem. But both are exceedingly rare causes.

It is possible to have incompetency of the valves of the right ovarian vein leading to symptoms on the right ovary WITHOUT nutcracker syndrome. Not all pelvic congestion is associated with the nutcracker syndrome.
Salvatore JA Sclafani MD
Patient contact: ccsviliberation@gmail.com

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drsclafani
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Re: DrSclafani answers some questions

Post by drsclafani » 6 years ago

Cece wrote:ok this is not so much a syllabus as a wish list!

for 2012 -
Many more images of interesting procedures. We have yet to see a planned 2 stage procedure to consider how successful this is as a technique.

Images from new IVUS that is 5x better than old IVUS.

An image of Dr. Sclafani in his university days dressed in homage to Sherlock Holmes...

A gazillion questions and participation from all of us.

No more health scares. Quick healing.

Progress on research with or without a neurologist partner.

The SIR abstracts to be presented at some other venue.

A third annual CCSVI symposium in July? Do you have time to recover before having to plan this? It's three months away, isn't it.

Abstracts on renal vein stenosis in CCSVI. Seems important to get this more widely understood and looked at.

Long-term follow-ups (up to 2 years now) on early patients.
there will be a symposium this year. it will occur in washington DC in the summer. It will be shorter, without a patient day and it will be sponsored by the conference planners from last year's symposium. Fresenius cannot do such a symposium as a for profit organization. Should be late july. program is nearly finished.

i am working on all the others.
Salvatore JA Sclafani MD
Patient contact: ccsviliberation@gmail.com

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Re: DrSclafani answers some questions

Post by drsclafani » 6 years ago

Cece wrote:ok this is not so much a syllabus as a wish list!

for 2012 -
Many more images of interesting procedures. We have yet to see a planned 2 stage procedure to consider how successful this is as a technique.
Ok...Here is a 30something year old female recently seen with recurrent symptoms. She was treated by another IR in december 2010. she had angioplasty of the left IJV and angioplasty of a azygous vein that had aneurysms for which the IR wanted to treat with stents that she refused.

Her symptoms of cog fog, memory problems, fatigue, numbness, temperature intolerance and imbalance all improved and remained so until fairly abrupt return of symptoms.

what follow are the venograms of the rijv, the lijv and the azygous vein from december 2010

RIGHT INTERNAL JUGULAR VEIN
Image


LEFT INTERNAL JUGULAR VEIN
Image

AZYGOUS VEIN
Image
Salvatore JA Sclafani MD
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Re: DrSclafani answers some questions

Post by hwebb » 6 years ago

Hi Dr. Sclafani,

Just wanting to ask if you've heard of pathogen interaction with CCSVI??

I have been treated 4 times in Australia - the final surgery deemed failed and IJV flow did not improve (~136mL/min bilat). So I looked for pathogen sources and investigated one that results in saphenous vein graft failure. Fast forward 5 months of intense antibiotics, my IJV flow volume rate is 500mL/min and all symptoms have ameliorated - even the ones that were present for 2.5yrs!

I look at CCSVI the same way I look at varicose veins at work. Varicose veins may have a ovarian vein source, however if the legs are treated alone - the vv's will return within months. I am not entirely convince with the truncular malformation theory as damaging/vascultis causing bacteria is seen in children too (childhood asthma in as young as 2yrs of age). I am in the process of organising a IJV stenosis swab sample for pathology purposes.

Regards,

M
I also look forward to these pathology results.

Dr Thibault also has me on antibiotic therapy. Whilst doppler ultrasound indicated no obstruction in my RIJV, I felt pressure on my jawline and had a throbbing jugular. A few months into antibiotic therapy, the pressure and throbbing have gone. The chronically inflamed lymph node in my neck is also no longer inflamed. Given my personal experience - I am convinced that in some cases, chronic infection causes or aggravates CCSVI. They have always said that MS is really a collection of diseases...maybe this is true of CCSVI also?

hwebb

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Re: DrSclafani answers some questions

Post by Cece » 6 years ago

drsclafani wrote:Ok...Here is a 30something year old female recently seen with recurrent symptoms. She was treated by another IR in december 2010. she had angioplasty of the left IJV and angioplasty of a azygous vein that had aneurysms for which the IR wanted to treat with stents that she refused.

Her symptoms of cog fog, memory problems, fatigue, numbness, temperature intolerance and imbalance all improved and remained so until fairly abrupt return of symptoms.

what follow are the venograms of the rijv, the lijv and the azygous vein from december 2010

RIGHT INTERNAL JUGULAR VEIN
Image
What a nice surprise! I wasn't expecting a case study.
It looks as if all the collateral veins are lighting up at the top of the jugular, but is that due to reflux flow from the jugular or is it due to the placement of the catheter and the force of contrast injection? There are veins opacified on the other side, which makes it look like there's a blockage in that RIJV, which was not found or treated. But I don't see a blockage if there is one (in the usual area at the level of the valves.)

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Re: DrSclafani answers some questions

Post by Cece » 6 years ago

LEFT INTERNAL JUGULAR VEIN
Image
Is that a bad valve, where it bulges?

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