Situation in Italy...your views?

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

Situation in Italy...your views?

Postby Zeureka » Sat Mar 06, 2010 1:34 am

This for the situation in Italy:

Zamboni just said in an interview start March:
"Lavorando bene la parte diagnostica potrebbe essere disponibile in molti centri distribuiti nel territorio nazionale entro l’anno. Lo studio terapeutico finirà per forza di cose invece fra due anni, e in tutta sincerità la mia aspettativa è che porti come regalo una nuova aggiuntiva arma efficace contro la SM."

= "Working well the diagnostics could be available in many centres across the Italian territory within this year. The therapeutic study is however contrained to be finalised only within 2 years, and in all frankness my expectations are that it will bring as present a new efficient additional weapon against MS."

On 3 March the Italian media was also active (e.g. on TG3 there was a report about CCSVI), followed by a move in the Italian Parliament.

However, it would seem that treatment is still limited to the former Zamboni research participants. Those who had been started on with a doppler within the studies and the ethical Committee had blocked them (now unblocked) and some of Zamboni's patients that had restenosis, so he then repeats the intervention.

In my view, as it looks, the treatment will not be inserted in the Italian health care system, before AT LEAST this 2 year study period Zamboni mentions will be finished. Whether interventions will be possible upon private payment, this is a mystery, and if so, the waiting list is already certainly as long as in other places...

Why do I reflect on this? Since I have long still be hesitating to go to Poland hoping still for Italy - have however performed doppler as well in Poland at first, followed by Ferrara (via the non MS-trick) last month. With Ferrara telling me the list of request is loooong, I should now wait - and not call - be patient...but in the Italian way! No word or tyniest indication how long... am also onthis mega-waiting list in Bologna. But that's only for doppler anyway and they have not even started there calling people!

But seems I cannot be patient, as understand waiting could mean more than a year or even two/three. So now have decided to accept my Poland listing for this spring...and pay that sum... and I'm planning to maybe ask just for ballooning without stent, so in 1-2 years, should my listings in Italy open up, can always repeat, as they do it now. I think that cannot harm, except my pocket for the cash... but could be a good investment would think to feel better 8)

Any comments on this? Your views could be very interesting for me. Either way. Thanks :D !
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Postby ErikaSlovakia » Sat Mar 06, 2010 2:04 am

Hi Stefi!
I just can tell you I would do what you do.

Just be ready for the case that ballooning might not be enough. Sometimes the vein collapses in 2 seconds so they offer you right on the table a stent so be ready for the answer. I know that even the doctors in Poland prefer just ballooning but they also know it is not enough in some cases.
I also understand it is a question of money for all patients.

Alles Gute!
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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stay local if possible

Postby hwebb » Sat Mar 06, 2010 2:29 am

it is of advantage if you can find a local interventional radiologist to do this work (balloon angioplasty is a common procedure for non-MS patients) . The local doctor will likely prefer the balloon technique...cause it's lower risk and if the vein collapses they can just re-balloon (on the spot...or during a later procedure).
I guess it's a different situation in each country - as in some countries this procedure will be covered by medicare (so can be repeated as many times as necessary without the patient incurring costs). If that is the case - the lower risk (though less permanent) procedure will be preferred.
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Postby Zeureka » Sat Mar 06, 2010 6:12 am

If you can find one that does it within less than 2 years...I'm still trying to also move forward in Italy in parallel - it's not that I just give up and go to Poland. Have an angiological visit via the health insurance in 2 weeks at my local hospital. I know they already know about Zamboni's papers...they will also recognise that I have CCSVI and the link to MS...

But what I need to find out is what they will tell me what can be further done at this moment. I was told when booked my appointment (when I showed my Ferrara doppler result pics of jugular vein blockage) they will most likely repeat my doppler and then see. But I'm really curious now: will they go further with an MRV or angiography? And I doubt they will go as far as intervention with the message given in Italy that all still under research...but PLEASE surprise me !!!

I go to talk to them and see...
Last edited by Zeureka on Sat Mar 06, 2010 1:35 pm, edited 1 time in total.
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Italy

Postby GiCi » Sat Mar 06, 2010 6:59 am

I have just received some articles on Zamboni published by local and a national newspaper in Italy. Zamboni says very clearly that he expects the new study to deliver results by 2012 and he hopes that the liberation procedure will become an accepted form of treatment by then. An important aspect to be considered is that the Region Emilia-Romagna (where Ferrara is) has authorized and funded the study on CCSVI with the support of the Italian MS Society.
I understand that MS patients have no time to waste and that waiting is painful while the condition shows deterioration, but we do not have much choice, a part from Poland and few other places (at a cost).
Let's join Zamboni's optimism: we have come a long way in a short time!
GiCi
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Postby cheerleader » Sat Mar 06, 2010 10:50 am

Good to see you post, Gici! I trust you continue to do well.
I join your optimism in recognizing that the AISM and local municipalities are funding Dr. Zamboni's research in Italy. This is good news!

For those who have no wait left, take Dr. Zamboni's research papers to your local universities and vascular/interventional radiologists. Many of them are hearing about CCSVI at vascular conferences, and are interested in learning more.
http://www.fondazionehilarescere.org/en ... zioni.html

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 1:18 pm

This is the best Italian video I've seen until now (TG2 - Medicina3). They also say it will take several years before the procedure will be available:

http://www.youtube.com/watch?v=qDVJV3oK ... re=related
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