Calling Dr Simkas patients.........

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

Postby Zeureka » Fri Jan 15, 2010 2:03 pm

I admit that my latest knowledge on this is from end November-mid December, where I spent a lot of time on researching (after the Canadian TV media on Zamboni). After trying to:

- get a doppler in Italy (also with help of my generalist, who asked private labs in my area to do the doppler without result - my neurologist, out of question to get support on this)
- contacting Belfast with (must be political!) reply that they HAVE NEVER DONE IT ??!
- contacting a colleague from Zamboni in Switzerland => who told me to contact Ferrara on his behalf, very kind he wanted to help me, but unfortunately an absurd illusion (I already knew that Ferrara would not do it...)
- and noticing that in US the same tests costed 5 x as much as with Simka, finally decided in December to ask for the exam in Poland.

Why block in Italy? (the conclusions of my Nov findings)

- Zamboni's request to continue research was blocked by an "Ethical Committee" of Ferrara. It seems that there is generally a lot of pharma lobby and neurologist world opposition trying to undermine Zamboni's findings. It is to be noted: the Italian Health Minster's wife is the President of Farmindustria (= italian pharma association) !! And Zamboni got openly criticised by neurologists at the Bologna conference in Sept, and not only there...
- At the start the AISM (Italian MS associoation) was not even supportive as the neurologists (and seems associated pharma) that work with AISM have a big say. But due to enormous MS member pressure over the last months, they now finally also take steps to promote Zamboni. I was furious on their reaction in the start!

What's new in January? - just checked a bit: hey, some things are moving!

Just found the following VERY INTERESTING new data related to Italy on facebook:

17.12.2009 Il Comitato Etico di Ferrara si riunisce per valutare il protocollo sulla CCSVI
22 dicembre 2009 Comitato Scientifico AISM presente il Dr. Zamboni e scienziati italiani e stranieri !!
23.01.2010 Zamboni in Convegno a Vicenza
http://www.smuovilavita.it/Convegno-CCSVI-23-Gennaio
a marzo 2010 inizieranno i corsi di Zamboni per istruire i suoi colleghi

So it seems in Italy slowly things are finally moving! Lets see what the ethical Committee will decide (or already decided?) and what they will report at the Conference taking place on 23 January. They say in March 2010 Zamboni will start courses to "instruct his colleagues". Oh, I hope so much this is seriously true!

This seems to be in line with what Luca reported in an Italian Forum from an e-mail reply he received from Zamboni. See email reply from Zamboni + Luca's comment below (Zamboni reports that he intends to organise trainings to instruct doctors so that the Ferrara treatment can be expanded also to other hospitals in Italy):

"Caro Luca,

siamo appena usciti dalla fase sperimentale. Da lì il poter estendere il trattamento su larga scala su tutti i pazienti del mondo richiede, come può facilmente immaginare, molto tempo. Quello che faremo sarà organizzare dei training per medici che possano portare il trattamento negli ospedali di provenienza, e, se ce lo permetteranno, di estendere le possibilità di trattamento ampliando il servizio qua a Ferrara. Tenga d'occhio il sito
www.fondazionehilarescere.org per avere aggiornamenti su questo.
Cordiali saluti,

Probabilmente è talmente oberato di richieste di informazioni che risponde con questa risposta preconfezionata. Non ha risposto alle mie domande ma è stato velocissimo nel rispondermi, meno di 5 minuti....

Ciao Luca"
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Postby Zeureka » Fri Jan 15, 2010 2:38 pm

And yes :D ! Finally the AISM is putting its research money into the right place!

AISM reports they now cooperate with Zamboni's Fondazione Hilarescere and will hold the first meeting of an ad-hoc created Scientific Committee on CCSVI on 25 January 2010 (it was first scheduled for 22 Dec 2009, but cancelled due to bad weather conditions).

http://www.aism.it/index.aspx?codpage=speciale_ccsvi

I guess AISM realised that at the international level Zamboni gets his credits, are getting more and more convinced about the scientific importance of his findings - and since nothing is done without an economic interest, that they can only win members by doing so!

eg apart from Canada and the US, research also starts to slowly slowly move in Europe. In Amsterdam and Frankfurt CCSVI tests are now going to be started for MS patients of certain hospitals on research project basis. Also heard they may start CCSVI testing in the framework of research in Belgium, but nothing really concrete yet. And Italy - can the political block be won? Lets see...

Steffi
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Postby pgm1 » Sun Jan 17, 2010 3:04 pm

Today is my day :D i hope it is for many others waiting for a scheduled time in March from Dr.Simka,its been a long wait but its getting closer just waiting for confirmation :D

This is what Dr.Simka e-mailed to me


Hello,
These are proposals of examinations and potential operation:
Doppler: 22th March
MRV: 22th March
operation: 23th March
M.Simka


Did anybody else get this e-mail?

Pam :D
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hooray

Postby cervin » Sun Jan 17, 2010 3:11 pm

oh Pam i am so excited for you i can't hardly stand it!!!

congratulations!!!!!
blessings
-ceci
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congrats

Postby Dovechick » Sun Jan 17, 2010 3:16 pm

All good things come to those who wait. Really happy for you.
Michele,  warrior4MS, mother and champion for Ella, the MSer. The solution is out there we just have to ask the right questions.
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CCSVI

Postby RichTar » Sun Jan 17, 2010 3:17 pm

[quote = "Pepe"] Hi Claire,

Pepe i żoną Pepe zostały z Polska w zeszłym miesiącu, aby uzyskać Eko-Doppler i zrobić MRV. No problems at all z lekarzy, pielęgniarek, kelnerów, taksówkarzy, pracowników portów lotniczych, kierowcy autobusów, recepcionists Hotel itd. itp. Proszę nie martwić się narodu polskiego. Wszyscy byli mili i uprzejmi. Przynajmniej te są nasze uczucia po wizycie Polska na 5 dni grudnia 2009. Będziemy fligth do Katowic znowu. Dotrzemy do Katowic w dniu 16 stycznia, ponieważ interwencja została potwierdzona przez dr Simka na styczeń, 18. Będziemy tam cały tydzień. Proszę ... Zapytaj o wszystko co chcesz wiedzieć. Na tym forum można znaleźć ludzi, którzy kochają innych pomocy.

Pepe. [/ Quote]
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Postby pgm1 » Sun Jan 17, 2010 3:18 pm

Hi cervin

Thank you so much,i hope the wait isn't so long for you :)

Pam :)
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Postby pgm1 » Sun Jan 17, 2010 3:23 pm

Hi Dovechick

I believe that to, thank you
hope all is well with you

Pam :)
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Postby Katie41 » Sun Jan 17, 2010 3:30 pm

Pam,

What exciting news! Best wishes for a wonderful trip, tests, and procedure! :D

Katie41
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Postby pgm1 » Sun Jan 17, 2010 3:36 pm

Hi Katie41

Thank you,are you waiting for a time?

Pam :)
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Postby AllyCanada » Sun Jan 17, 2010 4:09 pm

wow Pam that is great news...I am still waiting for my April 2010 date.
I am so excited for everyone and greatful for Dr.Simka,

your fellow Canadian

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Postby pgm1 » Sun Jan 17, 2010 5:29 pm

Hi Ally

I to am so thankful for Dr.Simka and so grateful that all of us have this fantastic opportunity,its absolutely wonderful :D I hope you get your day soon :)

Thanks your fellow Canadian
Pam :)
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Postby acol » Tue Jan 19, 2010 12:21 pm

Hi Everyone

After a very anxious time I finally got my dates for Poland last Sunday night. I guess that Dr Simka does much of this work himself and I commend his diligence and energy. I am scheduled for the tests on 24 March and the procedure the following day. Fantastic!!!

My heart goes out to all those people who are anxiously waiting for a definite date. I first contacted Dr Simka on 26 November. I think that it was around this time that things went ballistic and I know that things could have been very different had I delayed the contact by a week or two.

I am still working out strategy regarding travel/flights/accommodation/duration of stay etc. As some of you know I have tentatively made a few contacts with people who are going to Poland in March. I look forward to meeting those who will be seeing Dr Simka's team around the above dates. It has been a privilege and pleasure speaking to all you guys. Sometimes difficult to spot names but Pam (pgm1) stands out. Good luck to all of us!
Nigel
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Postby pgm1 » Tue Jan 19, 2010 4:46 pm

Hi Nigel

congratulation!!!! i hope we do meet.

Pam :)
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Postby Zeureka » Wed Jan 20, 2010 10:15 am

acol wrote: I am still working out strategy regarding travel/flights/accommodation/duration of stay etc. As some of you know I have tentatively made a few contacts with people who are going to Poland in March. I look forward to meeting those who will be seeing Dr Simka's team around the above dates. It has been a privilege and pleasure speaking to all you guys. Sometimes difficult to spot names but Pam (pgm1) stands out. Good luck to all of us!


Yes, that's a great idea to try to organise meeting others you know are going. You'll have lots of fun!

In case you have any questions just let us know. I can already recommend you a good Polish Restaurant in the centre were our "19 Jan CCSVI team" :) went for lunch and it was lovely: Restauracja Tatiana, ul. Staromiejska 5

A regards flights I recommend Wizzair from low price/acceptable service+seat comfort (am less fond of Ryanair, had a huge delay with that one to go back + the seats are uncomfortably squeezy), but it depends on from where and when you need to fly.

The Katowice-Pyrzowice airport web-site and very useful wikipedia list of all international flights can be found here:

http://en.wikipedia.org/wiki/Katowice_I ... al_Airport
http://www.katowice-airport.com/en

I booked the Wizzair-shuttle to Katowice VERY CHEAP directly online after my internet booking of the Wizzair arrival flight. It is very easy to find the shuttle bus: Upon flight arrival you just go to the exit of the airport + 10 m further across the street the buses are waiting. You show your reservation number (print-out from the email confirmation they will send you in Polish!), and say to Katowice (be careful: not Cracow! There are 2 different shuttles) And the shuttle bus will then bring you to the railway station.

I was even very lucky that since it was already 23:30 and I had asked the bus driver where to take a taxi to the St Josef Hotel (I had a paper where had written down the Hotel address which showed to him), he told me to stay in the bus when we arrived at the station and brought me to the hotel! When wanted to pay him sthg he absolutely refused + said: Gratis! Gratis!

And: I would recommend you to look up a basic Polish vocabulary on the internet of key sentences (Hello, Thank you, habe a nice day, good evening, I need to go to, how much does it cost etc.) and addresses you need to go to (so you can show them on paper) + take that with you. I had even prepared me a one-pager of key sentences I thought could be useful/necessary. As the bus and taxi drivers do mostly not speak English. Also: If they see you make an effort to say a few Polish words they are reacting even more positively, although they always try to help anyway, from my impression.

But mostly, other Polish people that know English will also help you and jump in as translators. At least it happened to me in the shuttlle bus.

So this for a first few things that might be helpful.

Steffi
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