Katovice or Sofia???

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

Katovice or Sofia???

Postby cassandra » Mon Jul 05, 2010 5:32 am

Hi everybody
this is the first time I write and ask you to excuse me in advance for the mistakes I'll do writing..
I'am Italian, ms from 2006, edss 3.5. I have fixed 2 appointments, one in Sofia and one in Katovice and I don't know where to go!!! I don't know why but as strange personal sensation I feel to prefer Sofia even I know that poland were the first to start so they have a great experience...
can you help me??
thanks
User avatar
cassandra
Newbie
 
Posts: 1
Joined: Sun Jul 04, 2010 2:00 pm

Advertisement

Postby babiezuique » Mon Jul 05, 2010 6:18 am

I just arrived from Katowice. Pam just talked about her disapointement with the clinic and i can share some of her concern. But you have to know that, when i entered in the operating room, i felt i was in very professionals hand. The man who operated me was not ludyga. But this man told me, every second what he was doing to me. For the first time of my life i felt someone was taking care of my sickness.

Today i'm at home, in Montreal... And i would return there and do it all again in a minute ( maybe without the catether;).

The nurses dont speak a word in ....french....neither italian..... and no english...this is thrue. But the medical team is top nuch, from my point of view.
User avatar
babiezuique
Family Elder
 
Posts: 121
Joined: Mon Dec 07, 2009 3:00 pm
Location: Montreal

Postby JoyIsMyStrength » Mon Jul 05, 2010 8:54 am

Barbara I am so happy for you to have had such a great experience and that the doc actually talked to you! That is so good to know. I wanted to meet you but I guess we missed each other. Best wishes and thanks for helping to strike a balance. We can only report what we know first hand... and naturally not every experience will be identical.

Pam
User avatar
JoyIsMyStrength
Family Elder
 
Posts: 164
Joined: Fri Jan 01, 2010 3:00 pm
Location: US

Postby Edde » Mon Jul 05, 2010 10:13 am

I was there at the same time as Barbara and I have to agree with her that even tough there where some strange moments I would not hesitate to go back to Katowice and do it again if I have to!
My comparisone is with the swedish hospitals and their standards are high but they DO NOT PERFORME CCSVI!!! :(

I hope you are feeling well Barbara!! Please stay intouch if you can!!

Edde
AKA
"The swedish guy" :)
User avatar
Edde
Newbie
 
Posts: 1
Joined: Tue Dec 29, 2009 3:00 pm
Location: Sweden

Postby babiezuique » Mon Jul 05, 2010 10:44 am

Edde! I is it going for you? I'm so happy to read you;)
User avatar
babiezuique
Family Elder
 
Posts: 121
Joined: Mon Dec 07, 2009 3:00 pm
Location: Montreal

Postby AnnaP » Thu Jul 08, 2010 4:21 pm

Hi Cassandra,

I'm Italian too, but from Montreal,Canada. I had my liberation on the 7th of June in Sofia, Bulgaria. It was a wonderful experience. The hospital is beautiful, doctor's are amazing and nurses very friendly(they spoke English)

buona fortuna,
Anna
Last edited by AnnaP on Sun Jul 11, 2010 3:33 am, edited 1 time in total.
User avatar
AnnaP
Family Elder
 
Posts: 106
Joined: Tue Dec 29, 2009 3:00 pm
Location: Montreal, Canada

hi

Postby livabird » Thu Jul 08, 2010 11:13 pm

Hi Cassandra,
This is actually Livabirds Hubbie....
I took Liva to Katowice in late Aril to have the treatment.
Our initial thoughs were fantastic, very professional.
We have since had to reasses this. Liva has PPMS and according to Dr Zamboni it is the Azygos vein that is most affected.
She had a stent in the right jugular and balooning in the left. Dr Simka did say he was amazed cause she had 2 azygos veins and at the time of the doppler he said they did not look good.
Well they didn't treat these veins, apparantly they were ok, but i believe it is because the azygos takes much longer to treat.
Anyways first month was great, but since then all her symptoms are back and worse.
We have now contacted Prof Grozdinski and he has given us an appointment for October 8th, we declined going back to Poland in July as we think they will not treat the azygos veins. So yes we need to fork out another small fortune but well worth it. From what we hear Bulgaria really look at the azygos veins and more often than not treat them, where as poland rarely treat these veins.
So depends on the MS you have possibly and don't get me wrong our experience in Poland was amazing... but we are dissappointed in what we have been told.

Hope this helps
User avatar
livabird
Family Elder
 
Posts: 344
Joined: Tue Jan 26, 2010 3:00 pm
Location: northampton, uk

Postby Vhoenecke » Fri Jul 09, 2010 7:40 am

I had appointments booked in both Poland and Bulgaria but went to Poland in April because they offered me a cancellation. I was concerned about Bulgaria at that time because they were just going to be starting up and there wasn't a lot of information. Once they started doing the procedures in Bulgaria i was hearing good things about the surgeons there. I have no complaints about what happened to me in Poland because I feel as if I am done with MS but those that were more MS advanced than me would fair better in bulgaria. Please keep in mind that is my opinion and mine only. The surgeons in Bulgaria are top notch but the place of Poland is better. I had Dr. Ludyga as my surgeon and he was very good but I don't think I had anything wrong with my chest veins.

Val
User avatar
Vhoenecke
Family Elder
 
Posts: 332
Joined: Sat Dec 12, 2009 3:00 pm
Location: Rosetown, Canada

Postby esta » Sat Jul 10, 2010 7:19 am

i am returning also in august to katowice, and have ppms and after reading this, now i am wondering too. oh, what to do...i wonder...can i ask them to ck my azygos again, and be more insistant about the facts that zamboni noted? or, just head to sofia. when are you going livabird
User avatar
esta
Family Elder
 
Posts: 385
Joined: Wed Nov 25, 2009 3:00 pm
Location: Summerland. BC Canada

sofia

Postby LivabirdsHubbie » Sat Jul 10, 2010 7:28 am

We are going on October 8th.
We just feel that this is the best option for us, but everyone must make up their own mind.

all the best
User avatar
LivabirdsHubbie
Family Member
 
Posts: 91
Joined: Thu Jul 08, 2010 2:00 pm
Location: Northampton UK

Good discussion

Postby fiddler » Sat Jul 10, 2010 7:37 am

This is an interesting and useful discussion for many people on TiMS, I'm sure. It will be a difficult choice I know, Cassandra, but isn't it wonderful that we all now have a choice!?! And from what I have heard on TiMS, Sofia is a very viable alternative. Whichever you choose, I wish you a wonderful liberation.
...Ted
Dx SPMS in 2004.  Liberated 29/04/2010.
My blog: www.my-darn-ms.blogspot.com
User avatar
fiddler
Family Elder
 
Posts: 398
Joined: Wed Dec 02, 2009 3:00 pm
Location: Fredericton, Canada

well said

Postby LivabirdsHubbie » Sat Jul 10, 2010 9:28 am

Well said Fiddler, it is nice that there is a choice, although i do feel for the people that there are no choices as it is very expensive to travel to these places, so maybe one day the government will wake up and offer this close to home.

We have chosen Prof Grozdinski in Bulgaria as he does a lot of work on the azygos and we explained what we have already done.

It does cost a lot more doing it this way as we now need to pay the 5,000 or more Euros instead of the 2,500 if we went back to Poland.

Good luck to all
User avatar
LivabirdsHubbie
Family Member
 
Posts: 91
Joined: Thu Jul 08, 2010 2:00 pm
Location: Northampton UK


Return to Chronic Cerebrospinal Venous Insufficiency (CCSVI)

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: frodo


Contact us | Terms of Service