Go local in Italy ...? Still in the educational phase...
Posted: Thu Mar 18, 2010 1:55 am
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
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