DrSclafani answers some questions

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

Re: Unique and Problematic Nature of CCSVI Malformations

Postby drsclafani » Sat May 01, 2010 10:04 am

Squeakycat wrote:Dr Sclafani,

In the opposition to CCSVI, much is made of the fact that the venous system is very flexible and adaptive and anatomic anomalies are not uncommon. If there is a blockage, blood finds a new path through collaterals which are there at the ready for just this reason. Things may not be normal, but there is no reason to treat.

How do we counter this argument that the nature of CCSVI is in fact different AND problematic and therefore warrants treatment?


good question. first someone noted an association between one patient with MS and venous problems in the neck. then a series of patients were tested and they seemed to have a high incidence of vein problems. Then a patient cohort with MS was compared to a patient cohort without MS.

The findings are clear: patients with MS have a distinct and statistically significant greater incidence of vein problems in the jugular and azygous vein that patients without MS. That is fact.

Then a cohort of patients with MS was treated by angioplasty and this showed a statistically significant improvement in objective measures of MS. That is fact.

NOW we need to verify those original observations by duplicating the results. Zivadinov and now Sinan have confirmed to greater or lesser degrees the findings of Zamboni about the association of MS and venous anomalies.

Now we need to verify Zamboni's results that angioplasty improves patients with MS. That is what I am doing, Sinan is doing, and others will be also doing. Assuring safety and suggesting efficacy.

THEN we need to figure out how to control for confounding variable such as the type of MS, placebo, etc

We got a long way to go
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for those afraid to stent

Postby hoodyup » Sat May 01, 2010 10:06 am

Hi, Dr. Sclafani.

About 2 weeks my wife had her right IJV balloned in 3 places and experienced some drastic improvements for about a week, then she reverted to her previous state. We are going to have to schedule another MRV and repeat the process again.

Question #1 If you were treating a suspected restenosis would you repeat this scan or just go for another venogram?

Question #2 Our IR, who is a 30+ year surgeon says he is reluctant to stent jugulars. I was wondering if you had any advice for other vascular surgeons or would be open to sharing "trade secrets" with other IR's regarding placement of stents in jugulars. I'm sure it would be on a case by case basis as patients veins are all different. I could PM you with his contact info if you are willing to consult with him.

Thanks,
Andrew
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Postby drsclafani » Sat May 01, 2010 10:08 am

Zeureka wrote:
monik_77 wrote:Dear Dr. Scaflani,

Eveybody is seeing the yugular and the azygos veins in MS patients, but I have a question, in the studies developed until now, the rest of the veins of the body in MS patients were cheked and were corroborated that are normal or not???? because I think that should be necessary to see in MS patients that only these veins have the problems or determinate that is a vascular problem that also affect to more veins in the body.

Cheers,

Monica.
Monik, it's certainly an interesting question and would also be interested in Dr Sclafani's views. I have been in touch with Dr Schelling on this and he replied to me mid March in German. Here the answer translated in English as much as I can:

"In the case of extensive spinal cord damages the conventional phlebography of neck veins and the azygos vein might not be sufficient to illustrate all critical venous passages. Should there be anomalies of lumbal veins ("Lumbalvenen") or their connections to the lower veins ("Hohlvenen"), it would be required to perform a widening of phlebography which is currently not yet performed in the standard MS protocols. According to Prof Haake work is underway to develop MRV of venous spinal cord/vertebral column drainages, but the results are unfortunately not yet satisfactory."

This was mid March, so maybe there has been some progress on this since then? Dr Sclafani would be interesting, if you have maybe heard anything on this research of potential stenosis in other vein drainages? Can damages in the vertebral column in your view have anything to do with the veins that are currently checked in the standard procedure (jugular/azygos)? Understand that a stenosis in the jugular vein could rather be responsible for brain damage caused by reflux (in form of "Dawson-Finger" and "Steiner-Spritzer" as Schelling explained to me). But the azygos, could that have an impact on myelin damage in the spinal cord/vertebral column?


the lumbar veins drain into the azygous system through ascending lumbar veins. These veins form a plexus around each vertebra and the blood comes from the surrounding bone, muscles and other tissues, including the spine. We know very clearly that there are malformations of these veins. AZygous (and its tributaries) clearly are involved in spinal cord drainage and i believe that abnormalities contribute to spinal MS
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Postby drsclafani » Sat May 01, 2010 10:19 am

The quicker we can gather this data, the faster we should be able to get a number of centers up and running to treat the 2.5 million requiring treatment for their vascular problems.

Although perhaps not an ideal tool, Google Docs provides some basic tools for collecting the data and restricting access in a way that probably meets HIPPA requirements for protection of patient privacy and Google Sites provides a quick and dirty web presence for managing the data collection. Happy to volunteer to build both if this makes sense.


i will write you off line to discuss this further
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Postby drsclafani » Sat May 01, 2010 10:21 am

Cece wrote:Dr. S, you have a striking level of commitment...I am here because my foot drop and ON have been acting up this week and I have been resting them off...and resting...and resting...(conveniently with my laptop)...but I am pretty sure you could be off playing golf...if you are not yet tired of hearing thank you, here it is again: thank you


i am in the hospital where i just finished taking care of one of those anonymour victims of trauma who will never know me. thought i would answer some questions before i took the rest of the day off to see the SUN
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Re: for those afraid to stent

Postby drsclafani » Sat May 01, 2010 10:25 am

hoodyup wrote:Hi, Dr. Sclafani.

About 2 weeks my wife had her right IJV balloned in 3 places and experienced some drastic improvements for about a week, then she reverted to her previous state. We are going to have to schedule another MRV and repeat the process again.

Question #1 If you were treating a suspected restenosis would you repeat this scan or just go for another venogram?

Question #2 Our IR, who is a 30+ year surgeon says he is reluctant to stent jugulars. I was wondering if you had any advice for other vascular surgeons or would be open to sharing "trade secrets" with other IR's regarding placement of stents in jugulars. I'm sure it would be on a case by case basis as patients veins are all different. I could PM you with his contact info if you are willing to consult with him.

Thanks,
Andrew


dear andrew. this is not that uncommon.
i would go right back to a venogram.
and I would likely do another angioplasty but without the images i can only speak generally..

Many people have asked if i would speak to their doctor and then want to send me their doctors name etc. I cannot do this. I think it would be unethical. Besides while i love you all and care about you, i am not your doctor and i cannot barge in on your doctor's treatment of you.

i am just a plumber writing a gossip column
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Re: Conistent Description of CCSVI Treatment

Postby jr5646 » Sat May 01, 2010 10:46 am

Dr. S. - thanks for your reply regarding BNAC testing... I think I'll save the cash to stay at the Marriott at Brooklyn ...

I'm sure by now they have perfected the imaging techniques, but the cash, plus the chance of a false negative are my main deterrants..

I think you may be right about the funding.. If they would let me know the difference I'd gladly donate it to the research..

Squeakycat wrote:Dr. S,

Rather than a choice of descriptions, do you think this one covers it:

CCSVI treatment is:

PERCUTANEOUS VENOPLASTY,
A MINIMALLY INVASIVE PROCEDURE PERFORMED UNDER LOCAL ANESTHESIA



Again, I think words matter, but it is very important that we use the right ones to maintain accuracy as well as a favorable spin.


Perfect... although I had to look up percutaneous (through the skin)..

We should all be familiar with subcutaneous injections - under the skin (copaxone, rebif), Intramuscular IM injections - into the muscle (avonex, betaseron?) and Infusion or Intravenous IV - within a vein (Tysabri, Solu-Medrol)

I think since we do the above on a regular basis, we can easily handle PERCUTANEOUS VENOPLASTY

If you want the average person to feel sorry for you tell them you're having PERCUTANEOUS VENOPLASTY and leave off the disclaimer... :)

Wikipedia... percutaneous pertains to any medical procedure where access to inner organs or other tissue is done via needle-puncture of the skin, rather than by using an "open" approach where inner organs or tissue are exposed (typically with the use of a scalpel).

The percutaneous approach is commonly used in vascular procedures. This involves a needle catheter getting access to a blood vessel, followed by the introduction of a wire through the lumen (pathway) of the needle. It is over this wire that other catheters can be placed into the blood vessel. This technique is known as the modified Seldinger technique.

More generally, "percutaneous" can mean 'through the skin'. An example would be percutaneous drug absorption from topical medications. More often, percutaneous is typically used in reference to placement of medical devices using a needle stick approach.

In general, percutaneous refers to the access modality of a medical procedure, whereby a medical device is introduced into a patient's blood vessel via a needle stick. This is commonly known as the "Seldinger Technique" Seldinger technique named after Dr. Sven Ivar Seldinger. The technique involves placing a needle through the skin and into a blood vessel, such as an artery or vein, until bleedback is achieved. This is followed by introduction of a flexible "introducer guide wire" to define the pathway through the skin and into the passageway or "lumen" of the blood vessel. The needle is then exchanged for an "introducer sheath" which is a small tube that is advanced over the introducer guide wire and into the blood vessel. The introducer guide wire is removed, and exchanged for a catheter or other medical device to be used to delivering medication or implatation of a medical implant uch as a filter or a stent into the blood vessel.

The benefit of a percutaneous access is in the ease of introducing devices into the patient without the use of large cut downs, which can be painful and in some cases can bleed out or become infected. A percutaneous access requires only a very small hole thorugh the skin, which seals easily, and heals very quickly compared to a surgical cut down.

Percutaneous access and procedures almost exclusively refer to catheter procedures such as PTA ballooning, stent delivery, filter delivery, cardiac ablation, and peripheral or neurovascular catheter procedures
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Thank You to Dr. Sclafini and Dr. Nunzio(lol)

Postby seanthecaper » Sat May 01, 2010 12:51 pm

I just wanted to say thank you to Dr. Sclafini and Nunzio for giving me feedback and explanations on my test results.

I am going to be in Halifax, Nova Scotia for May 5 CCSVI Day where we will be talking to politicians and getting the media involved so that the province is aware of CCSVI and its possible helpful implications if patients get tested and treated.

Go CCSVI go!
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Posted on facebook

Postby Karenems » Sat May 01, 2010 1:05 pm

THIS VIDEO WAS TAKEN 2 DAYS AGO.

http://www.youtube.com/watch?v=lvwCuPXrKgI

LESS THAN 24 HOURS AFTER CCSVI LIBERATION SURGERY YESTERDAY

http://www.youtube.com/watch?v=KYNhYtVojSQ
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Postby prairiegirl » Sat May 01, 2010 1:18 pm

@Karenems WOW! Dr. S, are you seeing some patients with fast and dramatic improvements like this?
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Postby Karenems » Sat May 01, 2010 1:26 pm

The videos that I posted aren't me. A friend sent them to me so I had to share. Amazing aren't they?
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Re: Posted on facebook

Postby Squeakycat » Sat May 01, 2010 2:46 pm

Karenems wrote:THIS VIDEO WAS TAKEN 2 DAYS AGO.

http://www.youtube.com/watch?v=lvwCuPXrKgI

LESS THAN 24 HOURS AFTER CCSVI LIBERATION SURGERY YESTERDAY

http://www.youtube.com/watch?v=KYNhYtVojSQ


WOW ! ! !

Not Lazarus rising from the dead, but pretty darn close!

This says that some fairly simple video pre- and post- procedure can tell a whole lot about what happens when you improve blood flow.

Video like this may well help with the IRB application and should be required viewing by all hospital legal departments!

Again, WOW.

One other comment. These videos really change my view of what the benefits of CCSVI are and what should be measured in ongoing research.

My thinking was that if you improve the blood flow, you get warmer feet and things like that which seem logically related to the blood flow, not balance which would seem to be more related to damage to nerves.

Clearly, at least in this case, the benefits are greater than I would have expected suggesting that the survey data has to be much broader than I would have initially imagined. It also suggests that any research ought to include pre- and post- videos because those moving pictures sure do tell lot more than words ever can.
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Re: Conistent Description of CCSVI Treatment

Postby Zeureka » Sat May 01, 2010 2:53 pm

jr5646 wrote:We should all be familiar with subcutaneous injections - under the skin (copaxone, rebif), Intramuscular IM injections - into the muscle (avonex, betaseron?) and Infusion or Intravenous IV - within a vein (Tysabri, Solu-Medrol)

I think since we do the above on a regular basis, we can easily handle PERCUTANEOUS VENOPLASTY
:lol: :) :)
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Re: Conistent Description of CCSVI Treatment

Postby Zeureka » Sat May 01, 2010 3:19 pm

jr5646 wrote:We should all be familiar with subcutaneous injections - under the skin (copaxone, rebif), Intramuscular IM injections - into the muscle (avonex, betaseron?) and Infusion or Intravenous IV - within a vein (Tysabri, Solu-Medrol)

I think since we do the above on a regular basis, we can easily handle PERCUTANEOUS VENOPLASTY
:lol: :) :)
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Re: Conistent Description of CCSVI Treatment

Postby Cece » Sat May 01, 2010 3:59 pm

jr, if the IRB holds off approval until after June 24th, the new Sheraton Brooklyn is opening up down the block from the Marriott, it looks good too.

Dr.S, hope your day was sun-filled...

Karenems, I watched both videos, tears welled up, I hope everyone gets to experience what she did...so dramatic and hopeful.

I think if percutaneous venoplasty is to surgery as tuna fish is to sushi, maybe copaxone injections are along the lines of fish flakes...or fish-flavored crackers...something more minor, anyways, because while the risk of skin reactions or infection is there, if I ever find my copaxone needle threading through my heart on its way to my jugulars, I'll know I've gone seriously wrong.... :) :) ...but the part about us being able to handle this, I agree...msers are tough cookies, fish-flavored or otherwise...
"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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