DrSclafani answers some questions

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

Postby HappyPoet » Tue Apr 27, 2010 8:09 am

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Dr. Sclafani has been honored with a "Sticky" thread:

Sticky: Dr. Sclafani's Thread Index

NHE wrote:Moderator's Note: Thanks to AlmostClever for putting together this index of Dr. Sclafani's thread," DrSclafani Answers Some Questions."
I have created links to each of the pages and made it sticky. I hope that AlmostClever will continue to update the index. Additions to the index will be updated here as they are made available.

http://www.thisisms.com/ftopict-11375.html
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Postby SofiaK » Tue Apr 27, 2010 9:44 am

Dear Dr. S:
Is there any way to do an MRV at your office/location? The closest place that I can do an MRV is an 8 hour drive. Then, I would have to be driven another 8 hours to your location on another day.

Plus, since I do not know of an appointment date yet, it's very hard to plan to have the test within 3 months.

Everything is harder because of my immobility and fatigue. I can't work, and now I can't even manage to get well. (Sigh). It's so frustrating for me to bother you because of my problems. I'm so sorry.

With thanks,
Sofia
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Postby ssmme » Tue Apr 27, 2010 9:58 am

Dr. Sclafani,

In 2002 I gave birth to triplets. The kids did great. I started bleeding to death. Before they could get back with the blood they began pumping me full of saline to give my heart something to pump. After several units of saline, they pumped 3 units of blood into me of which two bled out before they got the bleeding to stop. The third pint was a bit of replenishment. My doctors told me I was still "a quart or two low" as a NASCAR comparison I'm sure. I then developed bell's palsy from the swelling that occurred following all this trauma to my body.

It was after this experience that I (looking back) can see symptoms of MS began to appear. I was officially diagnosed in 2006.

Could venous "issues" develop from a trauma like this? Or am I trying to make an association where none exists?

Thanks,
Marcia
Last edited by ssmme on Tue Apr 27, 2010 11:31 am, edited 1 time in total.
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My Test Results - Barrie, Ontario, Canada

Postby seanthecaper » Tue Apr 27, 2010 10:53 am

I was tested for CCSVI by Angela Hume at the Barrie Clinic under the direction of Dr. Sandy MacDonald on April 15.

The test took about 20 minutes and followed Zamboni protocol to a tee.

The results were:

Right:
The cerebral venous outflow appears patent with no evidence of venous thrombosis. Venous insufficiency was eveident with reflux in the internal jugular vein at 0 and 90 degrees. B mode abnormality noted.

Left:
The cerebral venous outflow appears patent with no evidence of venous thrombosis. Venous insufficiency was evident with reflux in the internal jugular vein at 0 and 90 degrees. The cross sectional area of the internal jugular vein is larger than the cross sectional area at 0 degrees resulting in a negative delta (positive result). B mode abnormality noted.

I submitted these to this thread since I am on Dr. Sclafini's waiting list and was hoping he could comment on the results. This negative delta is what i need some meaning on, since i don't understand it. I tried calling Angela who did the testing but she is extremely busy currently.

Any help here would be appreciated,

Sean McNeil

Specifically,
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Postby Zeureka » Tue Apr 27, 2010 2:36 pm

drsclafani wrote:zeureka,
as you know by now, veins for the most part are highly compliant, meaning that they can distend greatly to accomodate blood flow. Exercise which would increase cardiac output and cerebral blood flow would surely distend the normal vein. Distension of the area where the stent is, could be a problem if the distension exceeding the diameter of the stent

personally i would sit around and eat bon bons for a couple of weeks

Sit around and eat bon bons, haha, è troppo forte Dr Sclafani...! :mrgreen: :mrgreen: :mrgreen: don't like those, but guess some dark chocolate or... hmmm... rather in spring a nice sorbet would not be too much of a sacrifice either :D
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Postby Nunzio » Tue Apr 27, 2010 3:02 pm

Sean,
the jugular vein cross sectional area (CSA) should be larger when you are laying down (0 degrees) and smaller when you are sitting up (90 degrees)
If the difference=delta is negative or zero then this is one of Dr. Zamboni criteria and they call it positive results
Hope this makes it clear for you.
Everybody here brings happiness, somebody by coming,others by leaving.  PPMS since 2000<br />
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Postby Cece » Tue Apr 27, 2010 4:04 pm

drsclafani wrote:hey cece, you catching up is like de ja vu


but is it vicarious luxuriant de ja vue?
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Postby JOhnnybaby248 » Tue Apr 27, 2010 4:09 pm

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
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Postby Zeureka » Tue Apr 27, 2010 4:15 pm

Dr Sclafani, In relation to brain fog, fatigue and instability/walking on clouds:

Have noticed that since recovery from a relapse of constant heavy instability and bain fog (woke up one day and could not walk for several months from strength) 5 years ago, these symptoms are now fluctuating in intensity and periods of spells/time of day. Stress and tiredness/amount of sleep certainly play a role. Usually in mornings when wake up am light and in afternoons then starts to invade me. Some days however wake up with a carroussel from start...and some days (although rare) hardly feel any instability at all..

I now realised that when IBT is stopped eg by a hotel stay, where IBT not possible due to a bulky bed that cannot be inclined => the next day is a carroussel for me. I have been wondering whether it is psychological, but my husband who now experienced several times that I actually only realized about the fact of non-IBT later during day, says he does not think so. He has now been wondering whether to create a "centrifuge" for me to shake me up every day ;-) !!!

Also realised stress- or negative emotional events (eg recently bad experience of again stronger instability/cloudy brain constantly days before/after funeral) are increasing those symptoms. In addition, directly 1-2 hours after acquagym or swimming, noticed that head suddenly lighter, but then since more tired in afternoon/evening, brain fog/fatigue often comes back...and sometimes then even worse.

So could - apart from the basic neurological issue causing instability (myelin damage in spinal cord, or due to some brain lesions - have both) THE INTENSITY of these symptoms also be explained on a blood circulatory level related to CCSVI?... if there is a vein blockage impact on worsening the intensity of such symptoms. Less oxygenation of the brain caused by "slow flow", as you explained before.

The type of improvements described by Kuwait (and also other testimonials) after procedure might confirm this... This could match the multi-factorial story and explain how some improvements can already be felt IMMEDIATELY after intervention...getting rid of the "slow flow" issue could be a logical explanation. Further improvements felt later in time and prevention of MS progression (less lesions seen in MRI) could then link to other additional mechanisms (eg avoiding the brain damaging effects caused by reflux etc...).
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Postby BELOU » Tue Apr 27, 2010 4:27 pm

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


WOW,you made my day Johnnybaby. That's amazing.
Marc
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Postby girlgeek33 » Tue Apr 27, 2010 4:38 pm

Sadly legal shut down Dr Bonn today. I have a confirmed email from Dr Bonn. He had 1 patient being tested & another IV in ready to be wheeled into surgery. :(

what I'd liketo understand is how can a procedure be shut down, like angioplasty when a patient is paying out of pocket, making it an elective surgical procedure?

Feels like discrimination to me! I might understand this more if the actual procedure were in some way new, but it really isn't. And it isn't as if anyone in the MS community has had anything horribly adverse happen from any of the angio procedures! What can we as patients do?
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Postby JOhnnybaby248 » Tue Apr 27, 2010 4:55 pm

girlgeek33 wrote:Sadly legal shut down Dr Bonn today. I have a confirmed email from Dr Bonn. He had 1 patient being tested & another IV in ready to be wheeled into surgery. :(

what I'd liketo understand is how can a procedure be shut down, like angioplasty when a patient is paying out of pocket, making it an elective surgical procedure?

Feels like discrimination to me! I might understand this more if the actual procedure were in some way new, but it really isn't. And it isn't as if anyone in the MS community has had anything horribly adverse happen from any of the angio procedures! What can we as patients do?


please provide more info
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dr sclafani

Postby aliyalex » Tue Apr 27, 2010 5:46 pm

"People who say it cannot be done should not interrupt those who are doing it." ~Chinese Proverb

...exclamation point. shout it out the window Network-style...
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Postby mmcc » Tue Apr 27, 2010 6:40 pm

Nunzio wrote:If I had to choose, as risk of the procedure, between incision site infection and progressive multifocal leukoencephalopathy, I think I would take the former anytime.
The problem with the informed consents is that they are written by the malpractice insurance lawyers and include any possible complication under the sky; They become so long and convoluted that the patients ends up signing them quickly trusting that the reason their surgeon proposed the procedure is because the benefit outweigh the risk in their situation.
Also there is always a risk in not doing anything.
If I am ambulatory now and I become wheelchair bound waiting for the procedure I think this would be unacceptlable for anybody.
I am a person willing to take a high level of risk to avoid further disability, but comparing PML to an insicion infection is hardly realistic. The risk of PML so far is estimated at 1 in 1,000, with not all cases fatal. The risk of death from angioplasty (in arteries - don't know for veins) is higher than that.

It is important to realize that neither Tysabri nor Liberation surgery, or any other medical treatment, including aspirin is risk free. The risks from libertation surgery cannot possibly be completely known at this point. I would remind you that a year into Tysabri as a monotherapy there were NO cases of PML. Liberation surgery has not been around long enough to know what the long term risks might be.

That said, I am waiting for my date to have it (and I took Tysabri, too).
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Postby mshusband » Tue Apr 27, 2010 6:49 pm

re: Dr. Bonn being shut down ...

Is it possibly because all these people screamed his name from the rooftop over the internet? I've seen his name on SEVERAL websites including this one and Facebook. If people haven't caught on that there are those against CCSVI out there who would call up a hospital and stop doctors from doing this ... you're naive. I think we've seen that at this point re: Dr. Dake, Dr. Sclafani, Dr. Bonn ...

We need to pass these names along through back-channels ... secretly. To help each other ...

A doctor who isn't doing the CCSVI procedure is just as good as a doctor who is against the CCSVI procedure. They're only as good for the patients when they're working.

We're trying to warn you guys ... maybe the next doctor found will be kept quiet and we'll go from there ...

I'm very sad again tonight through all the ups and downs of this ... this is another down.

Dr. Sclafani ... give us some good news and tell us you'll be back to plumbing soon???
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