Please help! Treatment in Poland is at risk!

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

Postby esta » Sun Oct 24, 2010 7:20 am

hi all
i immediately wrote dr simka regarding this and his answer was as folliws
You can find the letter at: http://www.ccsvi-ms.pl/03%20list%20kons ... lewicz.pdf
In brief, the statement is not absolutely negative. The need of trial covered by public money on actual impact of endovascular procedures on MS is emphasized. It is also stated that the treatment has not be proven to be efficient (which is not true - but prof. Ryglewicz did not know current papaers on this topic) and safety issues have been raised (again, with no evidence). The good thing is that it is postulated to create a joint commitee on this problem, with neurologists, radiologists and vascular surgeons. Since some of top vascular surgery professors in Poland do the procedures, I can't believe that the treatment could be stopped.
Marian Simka
PPMS. Liberated Katowice, Poland
06/05/10 angioplasty RJV-re-stenodsed
26/08/10 stent RJV
28/12/10 follow-up ultrasound intimal hyperplasia
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Postby Rici » Sun Oct 24, 2010 10:25 am

Medical Chamber aplays to stop the operations. Same as Ms professor Rydzewicz. They have the negative opinion on the mehods -all of them.
Rici
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Postby 1eye » Sun Oct 24, 2010 11:09 am

His having done more jugular and azygous stenting work than probably anyone on earth, and his having successfully cleared clots from them, it seems to me that Dr. Simka is the last person who should be interfered with. He is helping us all.
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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treatment in Poland

Postby odd1 » Sun Oct 24, 2010 12:50 pm

:? I have sent an e-mail to the people listed but the 2nd e-mail address failed, has anybody else had this problem? I was treated in Poland in September and hate the thought that the opportunity to have this treatment could be taken away from others.
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Re: treatment in Poland

Postby Rici » Sun Oct 24, 2010 1:28 pm

odd1 wrote::? I have sent an e-mail to the people listed but the 2nd e-mail address failed, has anybody else had this problem? I was treated in Poland in September and hate the thought that the opportunity to have this treatment could be taken away from others.

Prof neuro ryglew@ipin.edu.pl mailbox is full
Regards
Rici
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Postby Rokkit » Mon Oct 25, 2010 6:32 am

Thank you, esta. Excellent work.
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Postby Lassen » Mon Oct 25, 2010 8:39 am

Rokkit wrote:Thank you, esta. Excellent work

hi all
i immediately wrote dr simka regarding this and his answer was as folliws
You can find the letter at: http://www.ccsvi-ms.pl/03%20list%20kons ... lewicz.pdf
In brief, the statement is not absolutely negative. The need of trial covered by public money on actual impact of endovascular procedures on MS is emphasized. It is also stated that the treatment has not be proven to be efficient (which is not true - but prof. Ryglewicz did not know current papaers on this topic) and safety issues have been raised (again, with no evidence). The good thing is that it is postulated to create a joint commitee on this problem, with neurologists, radiologists and vascular surgeons. Since some of top vascular surgery professors in Poland do the procedures, I can't believe that the treatment could be stopped.
Marian Simka.


Hi Everybody. I am a Pole. I understand Polish - Mr Simka is not right. Please translate the links, I have already read them. It is all to stop the surgeries.
http://www.ccsvi-ms.pl/01%20list-sm-stenty.pdf
http://www.ccsvi-ms.pl/02%20list%20prez ... ologii.pdf
http://www.ccsvi-ms.pl/03%20list%20kons ... lewicz.pdf
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Postby PCakes » Mon Oct 25, 2010 9:49 am

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Postby David1949 » Mon Oct 25, 2010 2:31 pm

In the early 1900's there were gambling ships which anchored just beyond the territorial waters of the US. They did that because gambling was illegal in the US, but not out to sea beyond the territorial limit. So maybe we'll have to get hospital ships were we can get the Liberation treatment or other treatments that the government tyrants don't want us to have.
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Postby Puma » Tue Oct 26, 2010 2:31 am

Hi Rici,

I understand the problem. I am from Poland and I have read the both letters of profesor and President of the Doctors Chamber. These are very biased statements just to prohibit the operations. Adressed to the Health Ministry can do all the worst. It looks like Mr Simka has forgotten Polish language or so?

Greetings :lol: Puma
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Postby Leonard » Tue Oct 26, 2010 2:53 am

I am an MS patient myself and I understand very well what moves patients to seek treatment abroad. but the situation as it is developing with thousands of patients having to travel thousands of miles is not a healthy one. this is often not a one-fix thing and needs continuous follow up and after care to ensure the veins stay open. like it was and still is in my own case.

the sitaution as it is developing is at least in part due to the very rigid nature of some of the national health systems. with something as new and as disruptive as this discovery, the old systems simply do not seem to be able to deal with this thing, or anything that is outside the box. it makes you question how healthy our health systems really are, whether innovation or new ideas have any chances or everything just collapses under the weight of the old status quo and workers wanting to hang on to their old prerequisites. fortunately, here we have the Internet that consolidates decentralised powers..

we need to get and keep pressure on to have the regular health system in many countries adapt, the protocols to change, to get the ccsvi procedure become a normal part of the path for treatment when diagnosed with MS. therefore (and I say this with reservation as I know what all of you who can not find treatment at home are going thorugh) I tend to see the recent statements by Zamboni at ECTRIMS and now what is happening here in Poland with mixed feelings because this will increase the pressure further for ccsvi to land in the local normal health systems.
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Postby Rici » Tue Oct 26, 2010 10:58 am


Lassen wrote:Hi Everybody. I am a Pole. I understand Polish - Mr Simka is not right. Please translate the links, I have already read them. It is all to stop the surgeries.

David1949 wrote:In the early 1900's there were gambling ships which anchored just beyond the territorial waters of the US. They did that because gambling was illegal in the US, but not out to sea beyond the territorial limit. So maybe we'll have to get hospital ships were we can get the Liberation treatment or other treatments that the government tyrants don't want us to have.

Puma wrote:Hi Rici,

I understand the problem. I am from Poland and I have read the both letters of profesor and President of the Doctors Chamber. These are very biased statements just to prohibit the operations. Adressed to the Health Ministry can do all the worst. It looks like Mr Simka has forgotten Polish language or so?

Greetings :lol: Puma

Leonard wrote:I am an MS patient myself and I understand very well what moves patients to seek treatment abroad. but the situation as it is developing with thousands of patients having to travel thousands of miles is not a healthy one. this is often not a one-fix thing and needs continuous follow up and after care to ensure the veins stay open. like it was and still is in my own case. ...
.

Thank you. Please send more e-mails! It's not for me, for others!
greetings
Rici
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Ameds clinic in Poland has just announced it has expanded

Postby dm656 » Wed Oct 27, 2010 3:48 am

Ameds clinic in Poland announced yesterday that they have expanded their operations and anticiapate a wait time of about 30 days when they are fully operational by the end of this year,

http://www.facebook.com/pages/CCSVI-in- ... 0796282297



This is great news and I would highly recomend this clinic as an option.


www.ameds.pl
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Postby dunkempt » Wed Oct 27, 2010 9:31 am

Ameds clinic in Poland announced yesterday


Off-topic, dm656; and you've already got two other whole threads about Ameds.
-d
dx rrms august 2009 (dx CFS spring 1988) off avonex after 3 months
treated katowice 24-25 march 2010 - best thing that ever happened - check tracking thread
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