Dr. Zamboni words of caution on stents.

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Dr. Zamboni words of caution on stents.

Postby Nunzio » Thu Mar 04, 2010 11:11 am

I just came across a thesis from a young doctor on CCSVI whose senior author was Dr. Zamboni.
http://digidownload.libero.it/my_ccsvi_ ... alazzo.pdf

In the study a relative high number of patient had a restenosis mainly from the Jugular vein. (47% of total patients treated with ballon angio) They did treat one patient with Azygous narrowing with a stent. These are his words translated from Italian:
" The logical alternative would be the introduction of a stent but we avoided using this technique for the lack on the market of appropriate instruments with the correct dimensions. To adapt stents already existing for the arterial pathology to the level of the internal jugular vein would have increased the risk of migration to the lungs, dislocation, therefore affecting the venous drainage from above. In addition we do not have data on the biological interaction between the metal stents and the vein over time. In fact the stents could penetrate the vein wall or fracture and this, in young individual could have disastrous consequences."
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Postby Asher » Thu Mar 04, 2010 12:12 pm

Thank you Nunzio, wise words of caution.
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Postby youbetcha » Thu Mar 04, 2010 12:19 pm

Yes, thank you Nunzio....makes you stop and think.
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Postby Zeureka » Fri Mar 05, 2010 5:39 pm

And the stents that Katowice team is using (working with Simka)? Seems they developed some specifically for veins and places them only in areas where would not seem problematic.
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Postby ErikaSlovakia » Sat Mar 06, 2010 2:09 am

Zeureka wrote:And the stents that Katowice team is using (working with Simka)? Seems they developed some specifically for veins and places them only in areas where would not seem problematic.

Hi Stefi,
if it helps the name of my stent is Genesis.
Erika
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
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Postby INONU » Sat Mar 06, 2010 4:10 am

I have posted this matter like question to Dr DAKE
http://www.thisisms.com/ftopict-10464.html
perhaps some answers soon INONU
my daughter ms'patient since 2001
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Postby cheerleader » Sat Mar 06, 2010 10:37 am

Hi all...
I've spoken to both Dr. Zamboni and Dr. Dake about this issue. Dr. Zamboni did use stents in the azygos vein. His concern in the jugular was regarding migration, which we tragically saw in one patient at Stanford. There are ways around this migration issue, and the doctors are looking at various models. In my husband's case, his veins were so tight, that the stents wouldn't move at all, and they had endothelialized after one extra balloon procedure. Stents have been used in jugular veins prior to CCSVI treatment- but only relatively recently.

Dr. Dake doesn't have time to respond to questions online (nor do I think he should, doctors should speak privately with their own patients)- he used stents specifically shaped for the veins he treated. He is the eminent designer of stents, with several patents, and Jeff, as his PATIENT trusted his opinion.

link to Dr. Dake's publications/patents

The bottom line is that you have an open relationship with your vascular surgeon or interventional radiologist. And I continue to stress, they should be LOCAL. Jeff had to have a two month tuneup. We could not afford to fly to Poland everytime he needed a checkup. Go local!!

Cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Zeureka » Sat Mar 06, 2010 2:41 pm

Thanks for this useful info.

This has always been my worry: I had asked Simka, can you find me s.o. in Italy that could follow me up? He said he is at a conference in Bologna in March (it's the "Sclerotherapy 2010" event of the Italian Phlebologic Association (IFA) on 26-27 March) and will see if he can get some Italian contacts there...but that he cannot promise... and do not know if in Ferrara they would help me if went to Poland...

That's why would prefer not to get a stent - but I'm already happy to get my MRV disk, angiography, and if makes sense in my case, only ballooning. I know the risk is restenosis, but can live with that since know that in Italy I may then get local treatment in 2 years. If only stent would be the option to keep my vein open, I can refuse it, go for the lower price and go home a bit disappointed, but such is life...
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Postby Nunzio » Sat Mar 06, 2010 5:17 pm

Hi everybody,
I have some good news; it is not true that stents have been used only for arterial diseases. They have been used for venous diseases as well, with similar caliber as the jugular vein. Specifically for Pulmonary vein stenting
http://www.ingentaconnect.com/content/b ... 3/art00007
Iliac vein stenting for Chronic Venous insufficiency which is like CCSVI upside down( for the lower limbs)
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1847929/
and hepatic vein narrowing
http://www.springerlink.com/content/u22drgwmf0d8e4ky/
In addition they experimented with jugular vein stenting in dogs in the year 2000 (before CCSVI was in our vocabulary).
http://www.sciencedirect.com/science?_o ... verDate=01%
I hope some of this stents are appropriate also for jugular and azygous vein stenting.
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Postby L » Sat Mar 06, 2010 6:43 pm

What happens to a stent to cause the restenosis? Does the stent dislodge, or does the stenosis itself begin to effect the area around the stent? And if it does migrate, where might it migrate to (if it doesn't, in that rare occurrence, migrate to the heart)?
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Postby strawberry » Sun Mar 07, 2010 9:08 am

cheerleader wrote:Dr. Dake [...] used stents specifically shaped for the veins he treated.


Stents specifically shaped for internal jugular veins?

Are there data on how these are not prone to the "disastrous" long-term complications (fracture, penetration through vein wall) Dr. Zamboni's colleague/student says they were worried about?
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Postby strawberry » Wed Mar 10, 2010 10:07 pm

I'm bumping this up since my question has not yet been answered.

It seems that if the special jugular vein stents Dr. Dake used according to cheerleader do not fracture and penetrate through vein walls, that Dr. Zamboni should be made aware of them. What is the brand name of these stents? Is Dr. Simka using the same type?

Thank you.
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Postby ErikaSlovakia » Thu Mar 11, 2010 1:25 am

strawberry wrote:I'm bumping this up since my question has not yet been answered.

It seems that if the special jugular vein stents Dr. Dake used according to cheerleader do not fracture and penetrate through vein walls, that Dr. Zamboni should be made aware of them. What is the brand name of these stents? Is Dr. Simka using the same type?

Thank you.

Hi, I just can tell you that brand name of my stent is Genesis.
Erika
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
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Dr Franceschi position

Postby christophelux » Thu Mar 11, 2010 2:16 am

Dr Franceschi is well known venous expert and the leader in CCSVI research in France. I saw him a few weeks ago and he said he is strongly against stenting as it is not safe. For him, it could not be a first time option, only if restnenosis it could be carefully studied.

Zamboni statement (first message of the thread) is I think very clear and he did stent only in one specific case. Short term effects are proven (see the case of stent migrating to the heart) and long term effects (fracture of the vein?) are unknown. You have to remember that Dr Dake was stopped by FDA for systematically stenting without caution.

So take care. Balloning seems realtively safe (Franceschi confirmed it) but for stenting I would suggest to refuse it for the first intervention. So if you go to Simka, the only one doing routinely the liberation procedure, I would say you should explictely refuse stenting. If it restenoses in 8-9 months, then you can maybe take the risk.

Waiting for your thoughts
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Postby Zeureka » Thu Mar 11, 2010 7:28 am

Simka's angio-surgery team (it's not Simka himself that does the intervention in Katowice hospital) may weigh the risk depending on location/type of stenosis and case-by-case basis... I think it is difficult to generalise. It of course depends in how far one trusts the team one goes for intervention to, but if one may have doubts about their expertise one might ask the question why one chose them in the first place and who can at this moment then be considered an expert... It is for sure that they will try to do their utmost best within the moment of time of advance on research (= also their experience until now) permits them. There can therefore be advantages of waiting a bit longer until certain aspects are further researched and that there have been even more different cases, but this is a personal decision.

What will be important for me is to discuss this with them beforehand and weigh the advantages/risks. Views and speculations are certainly interesting, but it will depend on each case. And a consultation with one of the angio-surgery team staff specialists before the final surgery (having all the doppler, MRV etc tests in hand that they do beforehand) should logically be possible. It may even be standard, but the level of wanting to get clarifications and understanding on medical aspects from patients may differ. Upon arrival, I will certainly point out that I would appreciate such a consultation after all the tests have been done. I am not a medical expert but have scientific background, so hope they understand that I am curious from nature to wanting to understand.
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