DrSclafani answers some questions

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

Postby drsclafani » Sat Mar 20, 2010 6:10 am

drsclafani wrote:
Nonetheless, we know that venous angioplasty and veinous stenting of dialysis stenoses do not have the long term patency of arterial plasty and stenting.


Is there no possible better solution then to vein stensoses that might lengthen patency? Any ideas for a better treatment solution? Has this been explored in dialysis stenoses at all?


yes there is a new stent that is covered to avoid metal against the vein wall and funneled to improve flow.
i immediately thought of it for ccsvi but remain concerned that the covered nature of this stentgraft will work against us, sliding out too easily
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Postby drsclafani » Sat Mar 20, 2010 6:13 am

Do you know if any md, researcher or pharmaceutical company is working on developing stents specifically designed for venous use in ms? I suspect that because the potential market for this is potentially huge someone is doing this already. If so, after how long to you think they will be in clinical use.


i know of no such stents being designed. but it would probably be kept secret at this point.
Any MSer venture capitalists interesting in designing such a thing?

i would guess that five years would be the minimum time to market, maybe less if a old design were modified
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Postby dlb » Sat Mar 20, 2010 7:16 am

Hi Dr. Scafani,

First off, I admire your terrific sense of humor!

My question is: more than 20 years ago, my son had surgery to correct a coarctation of his aorta. They told us that depending on the length of this constriction of his aorta, once inside they would make a choice about how they repaired this problem, and the risks etc associated with each choice - cut out & butt the aorta back together if it is a short span, cut out & replace with an artery from his leg, or place a teflon patch (I this they called it teflon) which will be eventually be covered by his cells - as a stent is I guess. The risk with the cut & butt or replacing with his artery is that as he grew, the fusion points would be constricted again, which would have required another repair or angio. The patch was obviously more risky because of the amount of stitches but better in the long term. He had the patch procedure and has done well. So is there a reason why some of these procedures aren't considered for veins. I'm wondering if the tissue is more delicate and stitches won't hold up. I know it is far more invasive but is there another reason that these ideas aren't considered?

Thanks so much for your time & dedication to CCSVI!
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Postby Zeureka » Sat Mar 20, 2010 7:28 am

drsclafani wrote:
Now look at the problems in the jugular veins. The vessel gets larger as it goes in the direction of flow. The vessel can expand in diameter by 50% or more because of pressures applied in the venous bloood, or increased flow.....it is what we call a high compliance vessel. Also there is a lot of movement in the neck and this bending and twishing is a lot of force to apply to a stent for a long time. Will the metal fatigue. Will that lead to failure?
Finally stents become incorporated in the wall of the vein by growth of the inner level of blood vessel cells called endothelium over the wire mesh. ENDOTHELIALIZATION takes a couple of months. It ain't coming out If the stent clots off.
Yes funneling the stent so it enlarges as it gets closer to the heart sounds like a good idea, but we will probably see a lot of good ideas on how to keep the stent in place. ...If I find down the line that Zamboni's outcomes were better than mine, then i might change my mind.

Thanks Dr Sclafani the endothelialization issue is very interesting. From what I understand Zamboni currently only stents the azygos veins as it is a more rigid area of the body? But not the jugulars?

Arguments for this I heard circulating in Italian Community in simplified terms (not directly from Zamboni): Jugular higher risk than Azygos, the neck being a more mobile structure which could include risk of fracture of the stent. In addition stents close to the 'forame giugulare' could be difficult to remove in case of thrombosis. Risk the stent might compress carotid and nerves present in the same tunnel as the vein. Lesions of adjunctive nerves then not to be excluded.

So still so many unknown risks to research on.... It seems indeed right to weigh in a risk-benefit analysis on a case by case basis what's best for each individual patient depending on severity of conditions and improving chances for quality of life.
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Postby Zeureka » Sat Mar 20, 2010 8:01 am

drsclafani wrote:SLOWFLOW Clarity, return of sensation, etc sometimes are seen before leaving the hospital. Of course it could be placebo, but it could also be improved brain function because of improved brain flow.
DrSclafani, so could this suggest that the slow flow venous issue would not necessarily be linked to MS placques but to simply a seperate blood circulation problem - or as an interaction with MS neurologic issue, worsening certain MS symptoms? This would make sense as also light exercise (e.g. swimming/lighter gym in water) improving blood circulation seems to bring (maybe short) improvements. And heard Simka talking about maybe a blood-released neurotransmitter (e.g. angiotensin). Is research on such neurotransmitters underway?

Ouuuh, sorry that am not making your life easy with these questions. I know...you said could also be placebo effect, so guess noone can answer this yet...
-----
(Thank you and sorry Dr Sclafani, now saw you already explained the brain oxygenation issue very well on page 2, and cheerleader also gave an interesting link to another TIMS thread on hypoperfusion: http://www.thisisms.com/ftopict-7708-hypoperfusion.html)

So my only two key question remain on:
1. the status of research on the potential role of neurotransmitters such as angiotensin.
2. whether the slow flow problem caused by pathologic valves without reflux might be a seperate blood circulation problem in itself (as also logical in non-MS patients), but maybe worsening in interaction some MS neurologic issues.
Last edited by Zeureka on Sun Mar 21, 2010 12:50 am, edited 2 times in total.
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Postby strawberry » Sat Mar 20, 2010 9:17 am

drsclafani wrote:
A few TIMsers reported accessory nerve damage after stent placement high up in the IJVs
if the flow in the jugular veins is obstructed lower down, then flow is diverted to the vertebrals and that leads to collapse of the upper part of the vein. At the level of the carotid bulb, and the high IJ near the skull base.


Dr. Zamboni must have been aware of this as well when he started treating his patients with balloon angioplasty a few years back. I have heard that he didn't find it important to treat these areas, which is why accessory nerve damage does not appear as a side effect of treatment in his papers.

Dr. Simka confirmed the same thing. A quote of him has been posted here: http://www.thisisms.com/ftopic-10028-da ... asc-0.html: "At Stanford such a narrowing is regarded as real problem, and they usually put a stent in this area. But our interpretation is that it is only a collapse of the vein, which is secondary to diminished flow caused by problems in the lower part of the vein. "

I've been told by a doctor who went to the Hamilton conference that the Buffalo research team and Canadians also agree: narrowings above the clavicle are indeed just collapses, some physiological (i.e. they're found frequently in healthy people and fluctuate with time), and if increased in people with MS are a result of a problem in the lower jugulars, as you say. So this must reassure you, that almost everybody agrees with you on the meaning of upper jugular vein narrowings and that treatment of these areas would not be beneficial for CCSVI/MS.

I have a question about pressure gradients. I have been told that they are not meaningful if measured over large distances in veins. In particular, if there's a pressure gradient of, say, 3 mmHg over the length of such a collapse (say 3 cm), would you consider this reason to treat such an area?
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Postby larmo » Sat Mar 20, 2010 12:08 pm

North52 wrote:Dear Dr. Sclafani,

Do you know if any md, researcher or pharmaceutical company is working on developing stents specifically designed for venous use in ms?


An attorney posted within the last week here on TIMs that there are many advances in stents. Him and other attorneys will be patenting them within the next few months.
We will see them THIS YEAR. :)

Since the pharmaceutical companies will not make so much selling us expensive drugs, they want to get our money one way or another ! I'd rather they get it once and not for the rest of my life.
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Postby Cece » Sat Mar 20, 2010 12:23 pm

Zeureka wrote:This would make sense as also light exercise (e.g. swimming/lighter gym in water) improving blood circulation seems to bring (maybe short) improvements.


But, with swimming and light gym in water, in both conditions the head gets wet, which would help cool down the brain (I think) and cause temporary improvements that way? One of the thoughts with CCSVI is that it prevents the brain from cooling itself adequately.

Light exercise (or heavy exercise) makes me feel awful, but I have heard that there are people in the other camp where it feels good.
"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 Donnchadh » Sat Mar 20, 2010 12:40 pm

Cece wrote:
Zeureka wrote:This would make sense as also light exercise (e.g. swimming/lighter gym in water) improving blood circulation seems to bring (maybe short) improvements.


But, with swimming and light gym in water, in both conditions the head gets wet, which would help cool down the brain (I think) and cause temporary improvements that way? One of the thoughts with CCSVI is that it prevents the brain from cooling itself adequately.

Light exercise (or heavy exercise) makes me feel awful, but I have heard that there are people in the other camp where it feels good.


I forgot to mention this, as it probably sounds crazy, but the top of my head feels "cooler" (temperature) after the liberation procedure.

Improved, or probably more accurately to say, restored venous circulation and drainage from the brain?

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Postby ozarkcanoer » Sat Mar 20, 2010 1:08 pm

Donn,

Your head feeling cooler doesn't sound crazy to me at all !! One of my recurring symptom I call "hot head". My head feels like it is burning up and I apply ice packs to my forehead and the back of my neck. I wonder if this has anything to do with blood flow ?

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Postby berriesarenice » Sat Mar 20, 2010 2:18 pm

Dear Dr. Sclafani,

What an honor to have you on this forum. Thank you.

My questions is about angiograms. Strictly in terms of acquiring a CCSVI diagnosis, is there any reason that going up through the arteries, and sending dye through the brain and back down the jugular veins, wouldn't be just as effective in finding problems as going up through the veins. Again, this is only a diagnostic question, not taking into account the usefulness of being able to treat the problem while you are already on "the vein side."

With thanks,
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Postby strawberry » Sat Mar 20, 2010 5:30 pm

larmo wrote:An attorney posted within the last week here on TIMs that there are many advances in stents. Him and other attorneys will be patenting them within the next few months.
We will see them THIS YEAR. :)


cheerleader wrote in another thread that Dr. Dake used stents "specifically shaped" for jugular veins (http://www.thisisms.com/ftopict-10528-.html).

If somebody knows the brand name of these stents we can ask Dr. Scafani if he is aware of them...
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OMG - They are too busy suing each other

Postby larmo » Sat Mar 20, 2010 7:41 pm

I did a Google search on "recent stent Patent". It came back with almost 5 million results. While scanning the first 5 pages or so of the topics I came to the conclusion that HUGE money is being made by suing someone who infringed on their patent. Small settlements are in the $20 million range. The larger ones are in the BILLIONS. I got disgusted and stopped reading. :( You have to sell a lot of stents to equal a billion dollars. That's 100,000 of them at $10,000 each !!!! That's just what the profit needs to be. Add in all the other costs and the price goes up so much that it is out of reach for most.
I'm guessing the one used is United States Patent No. 5527354.
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Postby Zeureka » Sat Mar 20, 2010 11:57 pm

Simka seems to have used "Genesis" (think not the same as Dake used, who seems at least in start used stents that were specifically adapted in size to patient's vein)

Genesis (Johnson & Johnson) is "made of stainless steel and has a closed-cell configuration". It seems to have a "superior crimpability, flexibility, and comparable radial strength to the Palmaz iliac stent, and superior crimpability and radial strength and comparable flexibility to the IS LD series." Whatever that comparison means but sounds good...:)
See: http://www3.interscience.wiley.com/jour ... 7/abstract

Here an intersting technical paper on Genesis: "Experimental and numerical biomechanical analysis of vascular stent" (is from Universities in Poland!): http://www.journalamme.org/papers_amme05/1582.pdf

Genesis used in an infant for superior vena cava stenosis, but the web-link too long to paste (the preview of my post turned nuts). Used also in pulmonary vein stenting (2009!): http://www.ncbi.nlm.nih.gov/pubmed/19261037. Superior vena cava catheterization interventions between August 1984 and April 2006 were reviewed in infants and adults: http://content.onlinejacc.org/cgi/conte ... /49/9/1003

And: http://www.ncbi.nlm.nih.gov/pubmed/12822172
Last edited by Zeureka on Sun Mar 21, 2010 4:28 pm, edited 1 time in total.
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Postby Johnson » Sun Mar 21, 2010 12:18 am

Dr. Sclafani,

What about the use of filters in the Superior Vena Cava (normally employed for embolisms, and such) to "catch" any transient stents? And, would these filters catch fragments of any stents that might fracture?

My question about endothelialization was ultimately answered, but I still wonder if that means that the stent might have to be excised at some point, if the stent was causing untenable contra-indications (nerve pain, callousing, thrombosis, etc.). Is endothelialization a desired process in stenting?

I read with interest the remark about stents being able to withstand flexion 40,000-50,000 times, and tried to calculate how many times one might turn ones head, cough, chew, etc., in a day. I'm sure that it would be hundreds of times a day, at least. I don't see relying on a stent for decades.
My name is not really Johnson. MSed up since 1993
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