Erika`s procedure in Poland
Thank you - I am sure Erika won't mind and it is my fault anyway for raising the matter on her thread!
I am going down to Dorset in a few minutes - hope its not too cold. I'll resume my research probably tomorrow.
Andrew
Stairs are a problem for me but I can still stand on my own for short periods. In Poland I will try to do as I'm told (in order to get the best result). How's that for a first!
I am going down to Dorset in a few minutes - hope its not too cold. I'll resume my research probably tomorrow.
Andrew
Stairs are a problem for me but I can still stand on my own for short periods. In Poland I will try to do as I'm told (in order to get the best result). How's that for a first!
Nigel
-
- Family Elder
- Posts: 1125
- Joined: Wed Jul 29, 2009 2:00 pm
- Location: Slovakia, Europe
- Contact:
Do not worry, I really do not mindacol wrote:LR1234
Thank you - I am sure Erika won't mind and it is my fault anyway for raising the matter on her thread!
I am going down to Dorset in a few minutes - hope its not too cold. I'll resume my research probably tomorrow.
Andrew
Stairs are a problem for me but I can still stand on my own for short periods. In Poland I will try to do as I'm told (in order to get the best result). How's that for a first!

Erika
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
- 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
- MurielC
- Family Member
- Posts: 31
- Joined: Wed Jan 20, 2010 3:00 pm
- Location: Co. Kilkenny Ireland
- Contact:
Erika, I've never posted anything on this forum until yesterday and to tell you the truth I got such a buzz when people replied to me! This is such a cool community that I am delighted to now be a part of.
Your story is an inspiration! Really and truly, I want to say thank you.
I showed your forum and Edser's to a GP that is working with my brother (he has MS, I'm his research assistant!) and after looking at so many articles and papers and discussion on theories, I think your history with your own fight to do this is what really won him over. People fighting to get the procedure, overcoming obstacles to do just that, getting it done and are now reaping the rewards and documenting the process from start to finish (with such practical information) so that we can now benefit from what you've done.
You are pioneers in this plight!
Your story is an inspiration! Really and truly, I want to say thank you.
I showed your forum and Edser's to a GP that is working with my brother (he has MS, I'm his research assistant!) and after looking at so many articles and papers and discussion on theories, I think your history with your own fight to do this is what really won him over. People fighting to get the procedure, overcoming obstacles to do just that, getting it done and are now reaping the rewards and documenting the process from start to finish (with such practical information) so that we can now benefit from what you've done.
You are pioneers in this plight!
Booking.com is fantastic. Not only do they often give me lower rates (or have still rooms available) than when I call the hotels directly, but also, as a general policy you can still cancel (very easily, just by the e-mail link they give you) the hotel still 24h before.acol wrote:Hi Erika
Having hi-jacked your thread I thought it only polite to give an end result. When I tried Expedia.com I was unable to book the Qubus for the dates that I wanted. Using Booking.com I had no problem! Eureka!
I once needed to cancel a hotel reservation 1 day before due to illness and it went perfectly well. They also NEVER charge your credit card before-hand (the hotel will charge it upon arrival or departure). It's just a guarantee.
Steffi
Hi acol,acol wrote:My question really relates to its location in relation to the tests and procedures.
As you can see at the map Novotel is 600 mts from Altus Tower... and Qubus Hotel is into the complex called Altus Tower. I am still here...in Qubus Hotel...and... these days I had to pay about 14 Slotys for going to the Hospital by taxi. So, the taxi from Novotel to the Hospital will cost you about 16-18-20 slotys. No more.
Hope..this help you.
Pepe.
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.
Hi Pepe
It does help, thank you. I gathered from Erika, Mutley, Wonky1 and others that taxi's are fairly cheap if booked in the city.
I've just booked my flights with Wizzair and have opted to take the shuttle bus on the outward journey. This may mean having to take a short taxi journey from the city centre to our hotel - the Qubus, if the bus doesn't go pass our hotel.
Bits of the jigsaw puzzle are gradually falling into place.
It does help, thank you. I gathered from Erika, Mutley, Wonky1 and others that taxi's are fairly cheap if booked in the city.
I've just booked my flights with Wizzair and have opted to take the shuttle bus on the outward journey. This may mean having to take a short taxi journey from the city centre to our hotel - the Qubus, if the bus doesn't go pass our hotel.
Bits of the jigsaw puzzle are gradually falling into place.
Nigel
Hi Nigel,
Here a few practical details:
When you arrive - please ensure you take the Wizzair-shuttle to Katowice + not to Cracow (they stand next to each-other). They had already put my luggage in the Wizzair Cracow Minibus...fortunately they then noticed when showed my ticket again. I think they then asked the general Katowice shuttle bus if he could bring me as I was the only Wizzair-passenger to Katowice it seems... and it was a huge bus, not a Mini-bus.
Once you are in the bus, I would show the bus driver the address of the Qubus. I was lucky that after arrival at the station he drove me to the St Josef, which is very close to the station (but it was already 23:30 at night - and he saw I was a bit lost, so I think he wanted to do me a favour!).
I have also seen on wikipedia that the general hourly shuttle bus from the Katowice/Pyrowice airport to Katowice stops at the Qubus, so really try to ask - the Wizzair shuttle might pass by there as well !
I also saw that upon arrival at the station there were loads of Taxis waiting(even at 23:30). So if the shuttle cannot bring you, no problem at all. You just get out of the bus and take a Taxi for a few slotys.
FYI for getting slotys: There is a ec/visa/mastercard machine at the Katowice airport where you can take slotys. But be aware that if you request the machine 200 slotys as I did the machine will give you banknotes of 2 x 100, which is difficult (if not impossible!) in terms of change for a taxi driver
. Next time I would ask the machine less - or an amount like 135, to get banknotes that can also be used for a taxi
.
I was lucky that during the night did not need the smaller slotys...and that later the Euromedic Rolna was able to change me the banknotes of 100
...(the hotel could not...)
Steffi
Here a few practical details:
When you arrive - please ensure you take the Wizzair-shuttle to Katowice + not to Cracow (they stand next to each-other). They had already put my luggage in the Wizzair Cracow Minibus...fortunately they then noticed when showed my ticket again. I think they then asked the general Katowice shuttle bus if he could bring me as I was the only Wizzair-passenger to Katowice it seems... and it was a huge bus, not a Mini-bus.
Once you are in the bus, I would show the bus driver the address of the Qubus. I was lucky that after arrival at the station he drove me to the St Josef, which is very close to the station (but it was already 23:30 at night - and he saw I was a bit lost, so I think he wanted to do me a favour!).
I have also seen on wikipedia that the general hourly shuttle bus from the Katowice/Pyrowice airport to Katowice stops at the Qubus, so really try to ask - the Wizzair shuttle might pass by there as well !
I also saw that upon arrival at the station there were loads of Taxis waiting(even at 23:30). So if the shuttle cannot bring you, no problem at all. You just get out of the bus and take a Taxi for a few slotys.
FYI for getting slotys: There is a ec/visa/mastercard machine at the Katowice airport where you can take slotys. But be aware that if you request the machine 200 slotys as I did the machine will give you banknotes of 2 x 100, which is difficult (if not impossible!) in terms of change for a taxi driver


I was lucky that during the night did not need the smaller slotys...and that later the Euromedic Rolna was able to change me the banknotes of 100

Steffi
-
- Family Elder
- Posts: 1125
- Joined: Wed Jul 29, 2009 2:00 pm
- Location: Slovakia, Europe
- Contact:
Report: 81 days after the procedure in Poland.
I must tell you this as it is important.
- my fatigue was 80-85 % better the first 33 days after stenting - I am sure
- I got a flu maybe 6 weeks later after the stenting - it was not very bad, I did not even have fever, just strong headache, pain in my muscles and joints, tired, running nose, very little cough
- I thought it was gone around January the 7th but my fatigue remained
But my walking is really getting better. I went to see my neuro yesterday and she was like this
- she never saw me walking that well.
I remember Dr. Simka saying that people after stenting and flu feel worse.
I remember one patient here having similar problems after the flu vaccine.
So I started to take my Vigil (modafinilum, 100 mg) again. I do not sleep during the day - it is not that bad but I feel more often sleepy and tired.
Why is flu a complication I do not know but I thing you should know it.
But only my fatigue went worse the other positives things remain plus I walk better. Some patients from here saw me walking without cane in Katowice, so this is true.
Erika
I must tell you this as it is important.
- my fatigue was 80-85 % better the first 33 days after stenting - I am sure
- I got a flu maybe 6 weeks later after the stenting - it was not very bad, I did not even have fever, just strong headache, pain in my muscles and joints, tired, running nose, very little cough
- I thought it was gone around January the 7th but my fatigue remained
But my walking is really getting better. I went to see my neuro yesterday and she was like this

I remember Dr. Simka saying that people after stenting and flu feel worse.
I remember one patient here having similar problems after the flu vaccine.
So I started to take my Vigil (modafinilum, 100 mg) again. I do not sleep during the day - it is not that bad but I feel more often sleepy and tired.
Why is flu a complication I do not know but I thing you should know it.
But only my fatigue went worse the other positives things remain plus I walk better. Some patients from here saw me walking without cane in Katowice, so this is true.
Erika
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
- 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
Hi Steffi
Thanks. I don't want to get on the wrong bus! I will print out the name and address of the hotel + a suitable carefully constructed phrase in Polish to ask the driver to drop us off closest to the Qubus. My next task is to order some Polish Slotys to take with us, check on the car parking at Luton etc etc. For seasoned travelers all this is easy but we rarely travel abroad (too much aggravation when you use a wheelchair).
Thanks. I don't want to get on the wrong bus! I will print out the name and address of the hotel + a suitable carefully constructed phrase in Polish to ask the driver to drop us off closest to the Qubus. My next task is to order some Polish Slotys to take with us, check on the car parking at Luton etc etc. For seasoned travelers all this is easy but we rarely travel abroad (too much aggravation when you use a wheelchair).
Nigel
I got an appointment for March 2011
Hi Erika,
I got an appointment for March 2011. I'm happy yet sad, it's soooooooooo far away.
This is what Dr. Simka sent to me. In your opinion, Is this for real? So much talk about scams, I'm afraid now.
Thanks
Anna
Hello,
You are in the waiting list for "the liberation operation". The estimated time of the procedure is March 2011.
We will do our best to make the treatment possible earlier, but actually we receive more requests than we can manage in a proper time.
I will send you detailed information regarding date, payments etc. in a proper time
The hospital is in Katowice, the nearby airports are in Katowice and Krakow.
You should plan at least 7-days long stay in Poland (at least 3 days postop)You will get all necessary prescriptions and instructions how to use medications, as well as if and when to come for a follow-up (all these depends on the type of operation and patient's characteristics). In brief, postoperatively you should stay in the hospital overnight. The operation will not affect your mobility (it is only small puncture in the groin and nearly no pain).
Best regards
Marian Simka, MD
I got an appointment for March 2011. I'm happy yet sad, it's soooooooooo far away.
This is what Dr. Simka sent to me. In your opinion, Is this for real? So much talk about scams, I'm afraid now.
Thanks
Anna
Hello,
You are in the waiting list for "the liberation operation". The estimated time of the procedure is March 2011.
We will do our best to make the treatment possible earlier, but actually we receive more requests than we can manage in a proper time.
I will send you detailed information regarding date, payments etc. in a proper time
The hospital is in Katowice, the nearby airports are in Katowice and Krakow.
You should plan at least 7-days long stay in Poland (at least 3 days postop)You will get all necessary prescriptions and instructions how to use medications, as well as if and when to come for a follow-up (all these depends on the type of operation and patient's characteristics). In brief, postoperatively you should stay in the hospital overnight. The operation will not affect your mobility (it is only small puncture in the groin and nearly no pain).
Best regards
Marian Simka, MD
Dr simka
I received a very similar message to this In December 2009.
Michele, warrior4MS, mother and champion for Ella, the MSer. The solution is out there we just have to ask the right questions.
- fiddler
- Family Elder
- Posts: 398
- Joined: Wed Dec 02, 2009 3:00 pm
- Location: Fredericton, Canada
- Contact:
Same message
Anna, that is the same as one of the first messages I received from Dr. Simka. It does not come from a scammer, I'm quite sure. So or now you must wait. Probably you won't get any messages from Dr. Simka for quite a while since your procedure is so far away. But if you o get a message in the meantime asking you to send money, it is very likely a scammer. It would tghen be a reason to check with Dr. Simka to make sure it is a scam in which case you should send the message along with an explanation to the authorities in the European uni0n who deal with Internet fraud.
By the way, Anna, since your date for the procedure is so far away, you might begin looking around Montreal for hospitals that can do the CCSVI assessment. Who knows, perhaps you'll be able to find a vascular specialist who would be willing to do the procedure for you. Have you talked to your family doctor about it yet?
...Ted
By the way, Anna, since your date for the procedure is so far away, you might begin looking around Montreal for hospitals that can do the CCSVI assessment. Who knows, perhaps you'll be able to find a vascular specialist who would be willing to do the procedure for you. Have you talked to your family doctor about it yet?
...Ted
Dx SPMS in 2004. Liberated 29/04/2010.
My blog: www.my-darn-ms.blogspot.com
My blog: www.my-darn-ms.blogspot.com