Cenaculum Studiorum Bologna 8 September 2009

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.
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GiCi
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Cenaculum Studiorum Bologna 8 September 2009

Post by GiCi » Thu Sep 10, 2009 8:10 am

I am just back from Italy and I wish to share with you my experience in partaking in the first international congress on CCSVI and MS.
First of all I have to aknowledge that the organization of the meeting was impeccable and that the technological support was first class: I felt proud to be Italian and from Ferrara.

Prof. Zamboni opened the proceedings by outlining the key questions the meeting was set to answer and presenting the invited speakers. He underlined a few essential points:
1) The strong correlation between defective venous drainage of blood from the brain and MS
2) The strong correlation between the liberation procedures (treating the venous obstructions) and the improvement of the symptoms
3) The strong correlation between the incidence of relapses with the re-occurrence of obstruction
4) The strong similarity between venous leg lesions in venous insufficiency (varicous veins) and brain plaques.

The panel of international scientists was impressive: New York, Stanford, Dallas, Geneve, Detroit, Washington, Boston, Buffalo, in addition to the team of Ferrara and Bologna.

It seems clear to me that Zamboni's original idea and his subsequent work have generated a great interest in some illuminated clinicians, who are now frenetically trying to jump on the wagon. Thanks to their work, which at present seems to vindicate Zamboni's intuition, the luggards will be forced to deal with the evidence. My regret is that many MS sufferes will have major delays in their treatment.

I must here express some concerns regarding the work of Dr Dake in Stanford.
He presented a number of cases in which he used stents to treat jugular veins obstructions in MS patients.
My concerns are:
1) There is no evidence at present regarding the end results of stents placed in the veins in parts of the body subjected to a wide range of movement (like the neck is). There is widespread consensus that stents in such location may fracture.

2) Dr Dake reported a number of complications with the procedure, which are absent in Zamboni's experience with angioplasty (balloon dilatation).

3) Zamboni has not used stents in the jugular veins (I trust he knows why).

4) Dr Dake is a cardio-thoracic surgeon with no neurological background.

Going back to the meeting I strongly believe that it was only the beginning of a scientific revolution that will change the fate of million of MS people for ever: let us hope that the neurologists will cach-up quickly.

GiCi

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Post by cheerleader » Thu Sep 10, 2009 8:39 am

GiCi-
I was sorry we were not able to meet at the conference. I should address your concerns, because I have spoken at length about them with Dr. Dake-
1) There is no evidence at present regarding the end results of stents placed in the veins in parts of the body subjected to a wide range of movement (like the neck is). There is widespread consensus that stents in such location may fracture.
There was not a "widespread consensus" of fracture. In fact, it was brought up by a couple of doctors. Dr. Dake spoke to many venous surgeons after his presentation, and they understood what he is doing, and want to do the same. There have been instances of arterial stent fractures, but as you know, arteries and veins are completely different.
2) Dr Dake reported a number of complications with the procedure, which are absent in Zamboni's experience with angioplasty (balloon dilatation).
This is indeed true. However, restenosis occurs in 50% of all of the jugular ballooning procedures done by Dr. Zamboni.
3) Zamboni has not used stents in the jugular veins (I trust he knows why).
Dr. Zamboni has been quoted as saying he was waiting to develop an appropriatly shaped stent (with a lip) to use in the lower jugular, to avoid migration. Dr. Dake is finding stenosis in the higher jugular area and has appropriate stents for that area which do not migrate, and have been endothelialized in all of the patients treated. Dr. Zamboni's team also mentioned at the conference that they are considering stenting and open neck surgery for the jugulars, because of the high level of restenosis in the jugulars.
4) Dr Dake is a cardio-thoracic surgeon with no neurological background.
This is true, and he said these words at the conference and to all his patients. However, venous stenosis and reflux is not good for any part of the body, as shown by Dr. Haacke's SWI reports on microbleeding and iron deposition in the brain.

For those patients who want to wait for more research, there is no need to have a stenting or ballooning procedure right now. But for those who have gone ahead, we need to thank them for their bravery and desire to find a cure for this dreadful disease. But certainly, your cautionary post is appreciated!
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com

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Post by Jamie » Thu Sep 10, 2009 8:45 am

Thanks GiCi!

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Post by radeck » Thu Sep 10, 2009 9:02 am

Thank you for sharing your perspective, in particular with respect to Stents versus Ballooning. It appears from posts on this forum that Dr. D has done ballooning on his patients as well, but saw the veins closing up often. If the statistics of the Zamboni&Salvi study hold up, there should be a 50% risk of re-stenosis after 2 years. For some people it might be worth taking this gamble, while at the same time not risking that something goes wrong with the stents, for which we have less long time experience.

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Post by skydog » Thu Sep 10, 2009 9:29 am

I knew coming into the ground floor of the procedure that their would be some complications and further refinement to the protocol Dr. Dake was performing. I have lived a good life and am in quite remarkable health aside from the MS. So with this said I will bravely accept the risks myself for those who will benefit from what is learned in my particular case. And yes a Big Thank You to all the others here with me. Peace and Health, Mark
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Post by radeck » Thu Sep 10, 2009 11:47 am

There's talk about "open neck surgery" as an alternative to ballooning and stents. What exactly would such a procedure entail? Would it be safer (thought more invasive at first) than the others?

Radeck

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Post by Terry » Thu Sep 10, 2009 4:59 pm

2) Dr Dake reported a number of complications with the procedure, which are absent in Zamboni's experience with angioplasty (balloon dilatation).
What are the complications he reported?

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Post by cheerleader » Thu Sep 10, 2009 5:07 pm

Terry wrote:
2) Dr Dake reported a number of complications with the procedure, which are absent in Zamboni's experience with angioplasty (balloon dilatation).
What are the complications he reported?
from my notes:
Headache, nausea, shoulder and neck pain, (possible accessory nerve issues)
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com

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Post by Terry » Thu Sep 10, 2009 5:14 pm

from my notes:
Headache, nausea, shoulder and neck pain, (possible accessory nerve issues)
The ones we've been hearing of since Jeff.
Thanks much.

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Post by prof8 » Thu Sep 10, 2009 8:38 pm

Do we know if these complications are temporary and go away over time? I know there haven't been a lot of surgeries to wait it out....the first one was in May. But does anyone with neck and shoulder pain still have it after the surgery?

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GiCi
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Stents

Post by GiCi » Fri Sep 11, 2009 8:42 am

I wish to thank cheerleader for her usual competent and well researched reply. I simply expressed some reasonable concerns about the usage of stents in an unexplored location: time will tell whether such concerns will be substantiated. I do join those of you who expressed praise and admiration for those brave people who underwent the procedure by Dr Dake: their decision will certainly increase our future knowledge.
I understand that there is a high reccurrence rate of stenosis following balloon dilatation, but a further dilatation after 18 months is for sure better than a cocktail of daily drugs. It is a personal choiche of course.
My right jugular vein stenosed again after nearly two years and much of the improvement I experienced following the first procedure is still with me.
My plan is to have another dilatation followed by surgery in case of re-occurrence of the stenosis.
To my knowledge prof. Zamboni is developing an absorbable stent, which will probably not fracture with movements of the neck.
We are living an exciting time and, for the first time, we see some light at the end of the tunnell (and it is not an incoming train).
GiCi

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Post by Jamie » Fri Sep 11, 2009 8:49 am

Mel didn't have any of that.

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Post by cheerleader » Fri Sep 11, 2009 9:04 am

GiCi-
Thank you again for your participation here! We appreciate your knowledge as both a physician and MS patient. I wish that Jeff could have had a simple balloon procedure, as you have. Sadly, his jugular veins collapsed back into stenosis as soon as the high pressure balloon was collapsed. It didn't work.

At that point, Dr. Dake realized that stenting was the only option to stop the reflux of blood back into my husband's brain. We didn't have the luxury of time, as his MS was devastating to his quality of life. And time will only tell how this stents will fare in his neck. He had to have a reballooning of the left stent already, to thin the endothelial layer, and since then, all has been good. We realize that this is brand new science (in the jugulars) and trust in God's providential hand that whatever the future may hold, we will deal with it together.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com

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Re: Stents

Post by CureOrBust » Fri Sep 11, 2009 7:01 pm

GiCi wrote:To my knowledge prof. Zamboni is developing an absorbable stent, which will probably not fracture with movements of the neck.
That was my first thoughts (an absorbable stent) when Dr Dake first came forward. I was surprised it was not something we would of already had. :?

And those asking on "Side effects" / Complication since stents were used, I think do also have to include any complications derivable from the associated blood thinning programme as well.

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Post by radeck » Fri Sep 11, 2009 7:04 pm

Does anybody know if stents can be removed and replaced by improved ones, e.g. absorbable ones, at a later time when they become available?

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