Second Trips to Poland

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

Second Trips to Poland

Postby livabird » Sun Jun 27, 2010 2:38 am

I am just wondering how many people have had to go back to Poland for a secomd treatment. How long did you have to wait to go back. How many had problems with adygos ven that possibly was overlooked first time. I am just wondering as i was treated n April had a few better things after treatment after a month the benefits started to disappear no i am worse than before. I have two adygos veins which Dr. Simka had never seen before but they were not dealt wth durng procedure. I beleve they are my problem now so need to go back to see but i don't have any idea how long ths will take. Our ther waiting lists for retreatments.

Liva
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Postby sunlounger » Sun Jun 27, 2010 3:11 am

Hi livabird,

I think its a 3 months follow up if you have just ballooning and 6 months for stents ?
They should make it more clearer :?

My azygous vein might of been over looked both times I have been treated in Poland,

The reason I think this is because it was decided that my azygous was fine just from the MRV's not the needed venogram,
And there is also no images on both venograms showing them checking ?

When I last returned in May I said could they check my azygous again but they insisted it was fine,

So i'm left thinking maybe they have missed this but I cant afford to return and dont fancy anymore venogram radation this year :D
You might find that you’re not lost
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Postby livabird » Sun Jun 27, 2010 3:20 am

Considering how unusual i am with two adygos veins i would of thought they would have been looked at during procedue. So if you are stented you need to wait six months that is going to be hard. I can baerely move at moment. I am positive it is adygos though. I have heard of a few others who had stuff missed first time and had to return.
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Postby sunlounger » Sun Jun 27, 2010 3:39 am

They seem to be treating a lot more thoroughly in Bulgaria :?

It's crazy they did not check your 2 azygous veins 8O
I hope euromedic would understand your concerns and let you return sooner ?

I'm writing them an email about my azygous not being checked and if they can tell me why they thought a venogram was not needed :?
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Postby livabird » Sun Jun 27, 2010 4:15 am

Bulgaria s not an option. i want to go back to Poland deaing with the human component miskes an errors can happen i am stll pleased with treatment on the whole though
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Postby livabird » Fri Jul 02, 2010 10:58 am

Sunlounger i am going back the end of July. I am going to try and make them balloon my azygos veins. In the meantime i am going to find out as much about azygos as i can. I will deluge Dr. Ludyga with info. i just discovered from a report by Dr. Simka out of 250 ppl only 7 had anything done with their azygos vein. I wonder why. Dr. Zamboni said that ppl with ppms usually the azygos is affected. I really want them to tell me why they are not treating it. I want everything to be done this time physically nor financially i cannot keep going back.

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Postby Daisy3 » Fri Jul 02, 2010 11:58 am

Do you have PPMS liva?
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Postby sunlounger » Fri Jul 02, 2010 1:52 pm

glad to hear you got a chance to go back :D

livabird wrote:i just discovered from a report by Dr. Simka out of 250 ppl only 7 had anything done with their azygos vein. I wonder why. Dr. Zamboni said that ppl with ppms usually the azygos is affected.
Liva


wow this is such a small amount of people !!
is it possible many of us could have been missed :?

interesting to hear what they say ?

good luck
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population differences

Postby hwebb » Fri Jul 02, 2010 4:49 pm

it is possible that there are population differences in the two groups treated. I believe Zamboni treated Italian PwMS, and the Polish team have been taking in people from all over the world. I did read in one of those International Angiology papers (vol 29) that the pattern of stenosis seen in Italians is different to other groups of people (it was postulated that this was for genetic reasons).
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Postby livabird » Sat Jul 03, 2010 2:09 am

Just so you can see it here is Dr. Simka's report.
http://www.ms-mri.com/docs/Simka-hamilt ... csvi-1.pdf

Yes Daisy i have PPMS.

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Postby Downunder » Sat Jul 03, 2010 7:21 pm

Livabird,
Dr Sclafani has a comment on the azygous vein:

http://www.thisisms.com/ftopic-10680-da ... -2355.html
(near the bottom of the page)
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Postby Downunder » Sat Jul 03, 2010 7:23 pm

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Postby Justliberated » Sun Jul 04, 2010 5:30 am

I went to Bulgaria a month ago. I have a friend who has recently returned from Poland so I can add a personal element to this discussion.

My experience of bulgaria was a very thorough and professional service. I was checked by MRV in the UK and nothing was found. In bulgaria, they found my problem by doppler in around 10 minutes and was confirmed later in the day by venography. I currently feel fantastic and long may it last.

My friend commented that the service in Poland was excellent, although it appeared to be a production line to him. 8 were treated on the day he was treated. In bulgaria, only one other was treated on the day I was treated.

I do not wish to be critical of Poland as I feel that for a long time now they have been the only people in the world taking CCSVI and liberation seriously. Somebody has to liberate the thousands of people with MS.

Dr Simka has been taking this on single handily for some time. However, there is an implication here that Bulgaria is trying to gain reputation in their treatment because of this and in their own interests that this is done properly.


PS - My friend who has returned from Poland is also feeling fantastic.

PPS - Dr Petrov in Bulgaria told me that he feels that re-stenosis is not
inevitable with angioplasty. This illustrates to me that there are still differing opinions in CCSVI.
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Postby livabird » Sun Jul 04, 2010 5:46 am

Thank you for your post. i am starting to think poland is an assembly line they seem good for straight forward procedures but i believe not so much for more complicated like me. I need the thoroughness you mention hopefully i can get in to bulgaria reasonably quickly. thanks again.

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