Alby in Poland diary

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

Alby in Poland diary

Postby alby » Mon Feb 22, 2010 2:30 am

THIS IS FOR CHAT (for those who want to chat)


Feb., 7, 2010-feb, 8, 2010 - flew Lufthansa to Munich, LOT to Katowice. Munich airport crew were very professional and helpful, excellent job helping someone with wheelchair, and the airport itself is nice too. LOT was also very accommodating and helpful too. the crew in Katowice airport were also very professional and helpful. thanks to all of the above, the flight went well, although quite tiring.
taxi from airport to Qubus where we stayed was 150 zloty (about $50.00), that’s the standard rate. Arrived around midnight and went right to the room to rest.

Feb. 9, 2010 - the day to rest, Qubus has a nice restaurant at the first floor, love their breakfast. they have a breakfast bar with various cut fruits, cakes, great tasting breads, a few kinds of cheese, cakes and other sweets, jams, tea and great coffee. their lunch menu is fairly decent too. the breakfast bar is open from 7 to 10.
this is not to say that the other hotels are any less good than Qubus, I don’t know, I am just writing about what I’ve experienced.

the four level small shopping center attached to Qubus is a nice extra, there they have a flower shop, news stand, clothing stores, and a few restaurants and coffee shops, plus a movie theater.

I visited Marta during the day, fine young lady with her coworker Marek who does the footwork also, taking the patients to the hospitals, both are fluent in English, extremely helpful and very friendly, and do a great job.

that day I saw Richard and his wife, wonderful people. at night I saw Hanna and her husband with Claire and her partner, fine people they all are.

Feb. 10, 2010 - day of reckoning. I was scheduled for MRI-V at Zabrze hospital. arrived there around one by taxi. the place is a maze with many buildings which made things very difficult. the taxi driver spent well over thirty minutes outside running from building to building, to find the building. ironically our taxi had stopped in front of that building all along, and lucky me, my son saw Marek with Richard going to their van which incidentally is made for people with wheelchairs. Marek took us in to the office where we were supposed to go. The MRV took about an hour.

Feb 11, 2010 – the day for the procedure. It was on Glowackiego, Katowice. I don’t remember when they took me in, but I think I was there for well over two hours for the procedure, and I stayed over night. The hospital nurses were very good and helpful, thanks to all of them.

Feb. 12, 2010 – I was supposed to go for eye exam but unfortunately the little insertion point on the groin was not healed yet, because of blood thinners, so I had to stay another night.

Feb. 13, 2010 – I left the hospital in the morning, back to hotel. Very tired and weak. And no, I didn’t get off the wheelchair and start running around. It was still very difficult getting off and on bed and wheelchair. My son was a great help.

Feb 14, 2010 – Sunday, and people were out in droves in the streets and in the mall. After all, it was Valentine, and men were out with their loved one for dinner and movies. At night we had the pleasure of having dinner with Richard and his wife. We had to wait two hours for dinner to be served, but it was okay, we had a pleasant conversation, and it was a fine night.

Feb 15, 2010 – I was still tired and weak. I visited Marta that day (when I say I, it means my son taking me), I told her I was too tired for any eye exam. She insisted and said it was important, and probably it was, but I was too tired so I passed. It’s a rest day, tomorrow to Auschwitz, then Krakow. I had decided to go to Katowice airport first and on the way back leave from Krakow, this way we could at least see more of the country.

Feb. 16, 2010 – GOOD NEWS, I felt very good when I woke up, not tired or weak like the prior days. It certainly was encouraging. I felt more muscle strength on my legs. I could stand up from the wheelchair without my son’s help. I don’t know if this was a placebo effect or not, time will tell.
We hired a taxi to take us to Auschwitz, then to Krakow.

Auschwitz – you must visit it. No matter how many movies or documentaries you see, it’s different. If you are a human (which you are), chill will get down your spine, feeling what these poor people went through in WWII. You see row after row of wooden cabins where Nazis crammed people. I don’t want to go in much detail, but do visit it before you go back.

Krakow – we stayed in Novotel. Very spacious rooms with queen size beds, clean and modern. They had a fine restaurant with a good breakfast buffet, no view but a great hotel. we took a small tourist open car that took us around in the center of the town. Buildings are of hundreds of years of age.

Feb. 17, 2010 – Flew back to Munich, and to home.

1- Euromedic team have done a great job organizing everything from the airport onward and make your stay pleasant, although since it's pretty new for them too, a few things need ironing but I’m sure everything would be ironed out soon.

2- Qubus employees fluent in English and extremely helpful.

3-nurses very hard working and helpful.

Best luck to all those who are waiting.
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Postby ErikaSlovakia » Mon Feb 22, 2010 2:38 am

Hi Alby!
I am so happy for you :D :D :D
I remember your story from the very beginning. Just take your time.
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
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Postby ClaireParry » Mon Feb 22, 2010 2:48 am

Hi Alby,

I'm so happy for you. Thank you for such a comprehensive report.

Hope the improvements keep coming!

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Postby Pepe » Mon Feb 22, 2010 2:52 am

Hi Alby,

:D Congrats for the results :D

Take care! and please keep us updated!

All the best!

Could I suggest to write the CCSVI tracking project?

María was Dx RRMS 1996. SPMS since 2003; Dx CCSVI by Dr. Simka on Dec.-2009; Balloon angioplasty on Jan.-2010 in Katowice (Poland); Betaseron (2000-2009); Tysabri since June 2009. BBD since 2003. IBT since Jan.-2010.
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Postby irishmum » Wed Feb 24, 2010 6:04 am

Hi Alby

thank you for that.
As I am due to go in late April, Its reassuring to hear how it all works.
May your improvements continue...

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Postby alby » Wed Feb 24, 2010 1:08 pm

irishmum, just keep in mind that five days may not be enough, i needed a minimum of 7 days but i stayed 10 days just to be on the safe side.
also don't forget to put the cd while there so if you have any questions, you could clarify them right there.

good luck to you
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Postby LisaAnn » Wed Feb 24, 2010 4:27 pm

Dear Alby,
Was a wheelchair accessible van provided for you to get from the airport to the hotel and from the hotel to the hospital?
Did you see any accessible taxis?
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Postby alby » Fri Feb 26, 2010 9:41 am

i just used a taxi because when marta informed me about the services, it was too late but taxis work fine, although if you use their services which i recommend they come with wheelchair accessible van.
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Postby SammyJo » Fri Feb 26, 2010 1:19 pm

alby, Thank you for posting the results of your procedure to the Tracking thread, this is very important to help other MS patients decide if they should pursue CCSVI diagnosis and treatment. And the specifics of how things work in Poland is wonderful. I am glad you allowed plenty of time to recuperate, this can be difficult to recover from, especially if you are already of advanced disability, so it is good to plan for the worst, but expect the best!

You have expanded our collective knowledge.

RRMS '95 SPMS '02 | CCSVI 10/09 | Adult stem cells 2012 |
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Postby dunkempt » Sat Feb 27, 2010 4:31 pm

what is important about the eye exam? what are they looking for?

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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Postby alby » Sat Feb 27, 2010 9:50 pm

i think it's important for those who have eye problem, as a measuring stick for improvement after the procedure.
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