This Is MS Multiple Sclerosis Community: Knowledge & Support

Welcome to the world's leading forum on Multiple Sclerosis research, support, and knowledge. For over 10 years, This is MS has provided an unbiased community dedicated to Multiple Sclerosis patients, caregivers, and affected loved ones.
It is currently Wed Jun 19, 2013 7:45 pm


All times are UTC - 8 hours [ DST ]




Post new topic Reply to topic  [ 14 posts ] 
Author Message
 Post subject: Second Trips to Poland
PostPosted: Sun Jun 27, 2010 3:38 am 
Offline
Family Elder
User avatar

Joined: Tue Jan 26, 2010 4:00 pm
Posts: 344
Location: northampton, uk
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


Top
 Profile  
 
 Post subject:
PostPosted: Sun Jun 27, 2010 4:11 am 
Offline
Family Elder
User avatar

Joined: Wed Nov 04, 2009 4:00 pm
Posts: 110
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


Top
 Profile  
 
 Post subject:
PostPosted: Sun Jun 27, 2010 4:20 am 
Offline
Family Elder
User avatar

Joined: Tue Jan 26, 2010 4:00 pm
Posts: 344
Location: northampton, uk
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.


Top
 Profile  
 
 Post subject:
PostPosted: Sun Jun 27, 2010 4:39 am 
Offline
Family Elder
User avatar

Joined: Wed Nov 04, 2009 4:00 pm
Posts: 110
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 :?

_________________
You might find that you’re not lost


Top
 Profile  
 
 Post subject:
PostPosted: Sun Jun 27, 2010 5:15 am 
Offline
Family Elder
User avatar

Joined: Tue Jan 26, 2010 4:00 pm
Posts: 344
Location: northampton, uk
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


Top
 Profile  
 
 Post subject:
PostPosted: Fri Jul 02, 2010 11:58 am 
Offline
Family Elder
User avatar

Joined: Tue Jan 26, 2010 4:00 pm
Posts: 344
Location: northampton, uk
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.

Liva


Top
 Profile  
 
 Post subject:
PostPosted: Fri Jul 02, 2010 12:58 pm 
Offline
Family Elder
User avatar

Joined: Tue Feb 09, 2010 4:00 pm
Posts: 303
Do you have PPMS liva?


Top
 Profile  
 
 Post subject:
PostPosted: Fri Jul 02, 2010 2:52 pm 
Offline
Family Elder
User avatar

Joined: Wed Nov 04, 2009 4:00 pm
Posts: 110
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

_________________
You might find that you’re not lost


Top
 Profile  
 
 Post subject: population differences
PostPosted: Fri Jul 02, 2010 5:49 pm 
Offline
Family Elder
User avatar

Joined: Thu Nov 26, 2009 4:00 pm
Posts: 356
Location: Melbourne, Australia
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).


Top
 Profile  
 
 Post subject:
PostPosted: Sat Jul 03, 2010 3:09 am 
Offline
Family Elder
User avatar

Joined: Tue Jan 26, 2010 4:00 pm
Posts: 344
Location: northampton, uk
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.

Liva


Top
 Profile  
 
 Post subject:
PostPosted: Sat Jul 03, 2010 8:21 pm 
Offline
Family Member
User avatar

Joined: Mon Dec 21, 2009 4:00 pm
Posts: 89
Location: Melbourne, Australia
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)


Top
 Profile  
 
 Post subject:
PostPosted: Sat Jul 03, 2010 8:23 pm 
Offline
Family Member
User avatar

Joined: Mon Dec 21, 2009 4:00 pm
Posts: 89
Location: Melbourne, Australia
And

http://www.thisisms.com/ftopic-10680-da ... -2400.html


Top
 Profile  
 
 Post subject:
PostPosted: Sun Jul 04, 2010 6:30 am 
Offline
Newbie
User avatar

Joined: Sun Jun 06, 2010 3:00 pm
Posts: 8
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.


Top
 Profile  
 
 Post subject:
PostPosted: Sun Jul 04, 2010 6:46 am 
Offline
Family Elder
User avatar

Joined: Tue Jan 26, 2010 4:00 pm
Posts: 344
Location: northampton, uk
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.

liva


Top
 Profile  
 
Display posts from previous:  Sort by  
Post new topic Reply to topic  [ 14 posts ] 

All times are UTC - 8 hours [ DST ]


Related topics
 Topics   Author   Replies   Views   Last post 
There are no new unread posts for this topic. Poland

[ Go to pageGo to page: 1, 2 ]

kinga

28

3410

Mon Nov 23, 2009 11:13 am

ErikaSlovakia View the latest post

There are no new unread posts for this topic. Going to Poland!!!!

[ Go to pageGo to page: 1 ... 8, 9, 10 ]

Nees

145

19210

Sun Jan 03, 2010 5:35 am

broomdancer View the latest post

There are no new unread posts for this topic. For those who have gone/are going to Poland

[ Go to pageGo to page: 1, 2, 3 ]

kathryn6112

43

5014

Wed Jan 06, 2010 6:39 am

Jaguar View the latest post

There are no new unread posts for this topic. Poland

AnnaP

3

1468

Sat Jan 02, 2010 8:16 am

AnnaP View the latest post

There are no new unread posts for this topic. Poland in May!

[ Go to pageGo to page: 1, 2 ]

mags4short

17

2373

Mon Mar 08, 2010 10:35 am

mags4short View the latest post

 


Who is online

Users browsing this forum: No registered users


You cannot post new topics in this forum
You cannot reply to topics in this forum
You cannot edit your posts in this forum
You cannot delete your posts in this forum

Search for:
Jump to:  


News News Site map Site map SitemapIndex SitemapIndex RSS Feed RSS Feed Channel list Channel list
Read hundreds of personal Multiple Sclerosis stories on Experience Project. Experience Project is an anonymous community where people connect through their life experiences, made by the same people who built This is MS. With over 30 million personal stories about every possible life experience, you can quickly find people like you!


Interesting: Secret Confessions | Dream Meanings | Ask Questions, Get Answers

Advertise on the premier multiple sclerosis forum