This Is MS Multiple Sclerosis Community: Knowledge & Support

So right, in Italy, we are not only in the experimental phase, but have still not even overcome the educational phase...You are far wider on that in Canada!!

It seems I have been the first patient that went with a health insurance prescription by my GP to my local RN hospital's angiology department for a doppler (in the Emilia-Romagna Region). It costed me only 18 Euro, this why decided to go, because wanted to find out their views. Not that I necessarily expected that they would already have the Zamboni protocol...

Unfortunately it was really more an educational exercise, as the Dr performing the doppler had never heard of Zamboni, nor about the link of CCSVI with MS. Which for me is not astonishing but quite disappointing, as we were promised that by the end of the year the Zamboni doppler protocol would be wide-spread across larger hospitals in Italy (and RN is NOT small!), and that RN is even in a region that just sponsored for research on CCSVI...

The first reaction, when I showed the Dr my Ferrara doppler results of my left jugular valve stenosis he asked me: But what did you come here for? I said: to get advice and see if could be followed up locally.

We had quite a discussion, he asked me about CCSVI etc...unfortunately had not taken the Zamboni studies with me...I had a bit ingenuinely NOT expected that needed those and that an expert working in the field of angioplasty had NEVER even heard about it...

He then a bit unwillingly still performed me a doppler. However as he did not have the protocol, he could not find the sx jugular valve problem...he said the only thing he could see was that my left jugular was narrower and my right slighly enlarged in diameter.

Fortunately my Ferrara doppler results include pics , otherwise he would simply not have believed it !!! But not having studied the issue he was MORE than skepitcal. I told him, since this is a major discovery and you work in the field, best you go to the Fondazione Hilarescere web-site and study it...In 2 years you may well hear more, even here in your hospital about it.

The report he then gave me after the exam did not even mention the narrower left jugular, but at least he understood more or less my explanation of CCSVI (maybe he even had a look on internet - or had even called Ferrara??, as it took quite a while in the waiting room before received my report + they had asked me to give them my Ferrara doppler report as reference). The RN hospital report says:

"PROBLEMO CLINICO
Riscontro in esame ecodoppler presso L'univ. degli studi di Ferrara di stenosi della valvola preterminale della giugulare interna sx.
In studi sperimentsli eseguiti presso l'Univ. di Padova è stata trovata una correlazione fra SM e alerato flusso venoso nei vasi extracranici e un miglioramento della sintomatologia SM correlata a seguito di angioplastica dei vasi venosi stenostici.

VISITA ANGIOLOGICA
La metodica in oggetto è eseguita in modo sperimentale in centri Universitari di riferimento. Si consiglia follow up e terapia specifica presso i Centri suddetti."

"CLINICAL PROBLEM
Confronted with an eco-color-doppler exam of the Univ. of Ferrara of stenosis of the preterminal valve of the internal jugular sx.
In experimental studies undertaken at Univ. of Padova there has been found a correlation between MS and alterated venous blood flow of the extracranical venes and a correlated improvement of symptoms of MS symptoms following angioplasty of the stenosed veins.

ANGIOLOGIC VISIT
The method concerned is only performed in experimental ways in University centres of reference. It is recommended to request follow-up for specific therapy in the centres."

The problem is that in these "centres" the waiting list is as long as 1200 people at least...so this means for Italy: the expected 3-5 years are not unrealistic before CCSVI intervention will be offered to patients on the list.

There we are - and now I will stay on that waiting list , and decision now clear: in the meantime already go to Poland...

Steffi

Thabks for sharing.
3 years is a lot more than we can wait for. This is pathetic since the discovery's origin is Italian.

To hear that a specialist in angiology in a hospital few miles away from Ferrara never heard of CCSVI does not surprise me at all! Specialists tend to specialize within their own speciality in certain fields of interest and therefore tend to read only certain papers in certain journals. It is not a justification to such behaviour to say that the amount of scientific information produced daily is enormous and is nearly impossibile to read everything even concerning only one's own field. Knowledge is very slow to spread, especially when it is resisted by some groups. For example, most Neurologists have an interest in MS and are therefore expected to follow the relevant literature and know about CCSVI. If they did not oppose it, they would have gone to their colleagues radiologists and vascular surgeons asking questions, who in turn would have had to update themself on the issue. Knowledge would in this way spread quickly.
Unfortunately we have to rely more on the media than on scientific literature and this is unacceptable and full of dangers: it would be criminal to give MS patients false hopes with unreliable newspapers articles. But incorrect publicity is publicity nevertheless and may speed up the communication of knowledge.
GiCi

Well said, Gici. Your postings and expertise are appreciated!

Thanks Gici, agree. The problem is that in italy in fact a lot of misinformation is circulating on the internet (but also media) as noone puts the facts on the table. I think it would be more fair to tell those that are on the list frankly that more research is required, and explain the beauraucratic reasons behind this. The problem is maybe that too much hope has already been created in the internet community and there is then fear to disappoint...which happens inevitably anyway

It is certainly not Zamboni who wants the situation to be like this. I undertstood today that he must be facing a lot of opposition,. not only from neurologists as thought before, but even from experts in his field, and it must be a struggle for him. Astonishing maybe how far he already managed to get CCSVI news spread around the world Lets see it positively!

But unfortunately the politics and health care system in Italy and high standards for the requirements of clinical trials which need to be undertaken step by step over many years (in the EU and elsewhere) bring the constraints and it is hard to change - and hard to blame anyone for this. As unfortunately on many other things...but my friends over here should know this better than me, as I am not Italian) But admit: in Germany, the situation is in no way different

Hi Zeu,
maybe you are up to something;
if is not too expensive in Italy to see a vascular doctor and request a doppler then any MS patient should do so. This should force the doctor that do not know about CCSVI to look into it and ask for doppler training using Zamboni protocol for their doppler technician.
I am having better luck here in the USA and hopefully soon I might be able to get the liberation treatment in Florida.

Hi Nuzio, unfortunately it's not as easy as that...the Italian bureaucracy would in principle not permit a hospital of subject to the national health care system (AUSL) - so with the low cost - or also upon private payment - to perform tests based on protocols that are not yet approved and inserted into the healthcare system. I got to understand this now smashed in the face quite well. The hospital told me clearly: We cannot perform any tests on something that is still under research in the "experimental phase."

And even if dopplers would be performed, who would do the intervention? They insist that clinical trials need to have been performed before and that the procedure is approved by the regions. Therefore in Italy interventions can only be performed within approved research projects by University clinics which expressed interest and got approval.

I guess that some University clinics that get permission for research are currently being trained by Zamboni. Hopefully soon more will be known on this, as Zamboni indicated in a recent interview published on the AISM web-site and on RAI Television this would be the case across Italy by the end of this year. But that is only the doppler stage and only for that the list that is managed by Bologna(Salvi)/Ferrara(Zamboni) is already over 1200 people long... I know all this sounds absurd, and I'd like to do more but am a bit lost in all this. Zamboni has a hard time over here (if I may say this ironically: basically they punish him for not having left the country and headed off to US/Canada as most other Italian researchers do...).

I am on top not Italian (only living since 4 years in Italy) which does not make things easier political wise...in my other EU "home countries" things aren't better though...even worse I would say...I try where can to at least spread info - in combination with work and family/kids.

Maybe the idea is that if they make Italian patient wait long enough they will seek treatment abroad at their own expenses, saving the Italian government a bunch of money

Good one..!

I guess however that its rather the strong pharma lobby in Italy/Switz/Germany that realises with stents there's little money to make (even if would got a patent)...angioplasty none at all... and the neurology community and other docs opposition to think out of the box from their field before no double-blind clinical trials confirmed it all.

And the Italian health care system/legal requirements for "ethical committee" approvals by each region to perform specific research projects within a limited scale easily permits to block it all, and there we go...

But you're also right - in Italy if one has MS, gets "exemption" status for MS recognised and prescribed treatments (that's in principle a very social system:!:). But, so this treatment would cost the gov a bunch in one go to start with. However the gov should realise how much there is potentially to gain afterwards! Without scientific trials confirming it, they are however still unsure if this would be the case...and so there lies another problem as well.

Here some RUMOURS from the Italy internet-Community yesterday. I am pointing out: This is only a rumour for now from an MS patient which said had been passed on the word by s.o. else linked into CCSVI who talked to her Neurologist that was at a medical conference where this was just revealed as news... so news over over over...well so no idea if this is reliable...

Nothing on the official Fondazione Hilarescere research web-site yet...The rumour reported is that

1. Curently 1850 MS patients on the Bologna/Ferrara waiting list -Al momento ci sono oltre 1850 pazienti in lista.
2. In June 2010 they will start the official research, in 15 hospital centres across Italy.
3. They will perform the clinical trial on 1500 people (double blind etc.) as follows:
- 500 healthy patients
- 500 patients with another neurological pathology/deficit
- 500 patients with MS

This means only the first 500 on list will be called + understood it is about the doppler test first. Noone knows what will happen about the other 1350...

Below the original post from "Ideamultipla Forum" yesterday:

Inviato: Lun 22 Mar 2010 14:22 Oggetto: CCSVI, ANTEPRIMA ASSOLUTA: LA SPERIMENTAZIONE...
... PARTE A GIUGNO 2010!!!

mi ha appena telefonato susi69, doc im per i 'contatti' ufficiali per la ccsvi... ha parlato con la nostra neurologa, la quale ha partecipato ad un convegno medico e riferisce queste 'niuss':

=> a giugno parte la sperimentazione ufficiale;
=> i centri sm/ospedalieri coinvolti saranno 15,
sparsi in tutt'italia (non è dato a sapere dove);
=> per la sperimentazione clinica (doppio cieco, etc)
verranno arruolati 1.500 pazienti, così suddivisi:
♦ 500 pazienti sani;
♦ 500 pazienti con deficit e patologie neurologiche;
♦ 500 pazienti affetti da sclerosi multipla.

susi si riserva la conferma del 'quanto' anche con il dott. salvi, durante la sua visita di controllo neurologico fissata per giovedì 1mo di aprile p.v.

fine della trasmissione...