Oct 2010

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

Oct 2010

Postby matchoo » Thu Dec 31, 2009 4:22 pm

:D . I have an appointment for this date. I am living in NC and need to make plans for travel. I have some extra questions prior to surg
.1 I am told stints re-endotheolize to the vascular wall of the vein making them quite secure. Blood thinners for 2 months or life?
2. Why must LDN be stiopped ? Do they goive opiates during procedure?
3. Are there any statistics of success with hospital in Poland other than Zamboni?
4. Does The Dr look at all possibilities of strictures, head, neck and abdominal? Is there some things he cant do? Such as MRV?
5. The best airport is Krakow? Is there a train from Prague to Krakow?
6. Thanks for all the good post. I have read many. Not all though, alot of this info already given I bet.
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Postby esta » Thu Dec 31, 2009 4:50 pm

hi machoo
i've got a date for june 2010, i am flying direct to Franfurt, them to katowice.
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Postby matchoo » Thu Dec 31, 2009 4:57 pm

Thank You. I bet Frankfurt is best then. Wanted to see Prague but maybe should just have the procedure and be happy. Maybe there are sites to see in Poland. Want to make a vacation out of it.

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Re: flying

Postby Johnson » Thu Dec 31, 2009 6:55 pm

esta wrote:hi machoo
i've got a date for june 2010, i am flying direct to Franfurt, them to katowice.


Hi esta,

Just wondering if you have a specific date, or just the month. I wonder because I was slotted for May, but have no confirmation yet beyond that. Perhaps I need to e-mail Dr. Simka again.
My name is not really Johnson. MSed up since 1993
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Re: Oct 2010

Postby ErikaSlovakia » Fri Jan 01, 2010 1:46 am

matchoo wrote::D . I have an appointment for this date. I am living in NC and need to make plans for travel. I have some extra questions prior to surg
.1 I am told stints re-endotheolize to the vascular wall of the vein making them quite secure. Blood thinners for 2 months or life?
2. Why must LDN be stiopped ? Do they goive opiates during procedure?
3. Are there any statistics of success with hospital in Poland other than Zamboni?
4. Does The Dr look at all possibilities of strictures, head, neck and abdominal? Is there some things he cant do? Such as MRV?
5. The best airport is Krakow? Is there a train from Prague to Krakow?
6. Thanks for all the good post. I have read many. Not all though, alot of this info already given I bet.

Hi Matchoo,
I think I am able to answer some of your questions.
1. As for blood thinners - I had to inject Clexane 40mg for 60 days but it can be different in each case. I must take Aspirin: 150 mg a day. I should have my check up this month so I will ask Dr. Simka for how long.
2. As for LDN. It is advice from Dr. Dake to stop 72 hours prior the procedure in case they use some opiates during the procedure or some pinkillers after. As I did not have any pain at all after the procedure I started day 3 after the procedure with LDN again.
4. As far as I know they did MRV of my head neck and azygos as well. I heard they used MRV during the procedure for some patients.
5. There is also an airport in Katowice - you must check your flights.
Yes, there is a train from Prague to Katowice for sure. E.g. at 10:11, it arrives to Katowice at 15:50. It leaves from the main train station in Prague. There is a night train from Prague to Krakow at 21:32, you will be in Krakow next morning at 6:24.

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
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Postby Pepe » Fri Jan 01, 2010 2:30 am

Hi Matchoo,

Last December we have been in Krakow for two days just for tourist reasons... after two days visiting this really beatifull city we travelled to Katowice by bus to do the Eco-Doppler and the MRV.

This month, January 2010, we are going to fligth to Katowice airport... to get the operation done by Dr. Simka's team...in Katowice, of course. So, no reason, this time, to go to Krakow.

Erika, Mutley, Edser, Wonky1, Fatima, Ibrz...are members who have been in Poland too and I am sure that their posts would help you a lot to organize the trip. Feel free to ask for anything. All of them are friendly people who love help others...

Pepe.
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Postby Robnl » Fri Jan 01, 2010 3:24 am

I guess the April2010 people (i'm one of them :D ) will get info this month. As Dr. D. mailed that everyone in the waiting list will get info 3 months before the expected appointmentmonth.

Rob
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Re: Oct 2010

Postby matchoo » Fri Jan 01, 2010 7:18 am

ErikaSlovakia wrote:
matchoo wrote::D . I have an appointment for this date. I am living in NC and need to make plans for travel. I have some extra questions prior to surg
.1 I am told stints re-endotheolize to the vascular wall of the vein making them quite secure. Blood thinners for 2 months or life?
2. Why must LDN be stiopped ? Do they goive opiates during procedure?
3. Are there any statistics of success with hospital in Poland other than Zamboni?
4. Does The Dr look at all possibilities of strictures, head, neck and abdominal? Is there some things he cant do? Such as MRV?
5. The best airport is Krakow? Is there a train from Prague to Krakow?
6. Thanks for all the good post. I have read many. Not all though, alot of this info already given I bet.

Hi Matchoo,
I think I am able to answer some of your questions.
1. As for blood thinners - I had to inject Clexane 40mg for 60 days but it can be different in each case. I must take Aspirin: 150 mg a day. I should have my check up this month so I will ask Dr. Simka for how long.
2. As for LDN. It is advice from Dr. Dake to stop 72 hours prior the procedure in case they use some opiates during the procedure or some pinkillers after. As I did not have any pain at all after the procedure I started day 3 after the procedure with LDN again.
4. As far as I know they did MRV of my head neck and azygos as well. I heard they used MRV during the procedure for some patients.
5. There is also an airport in Katowice - you must check your flights.
Yes, there is a train from Prague to Katowice for sure. E.g. at 10:11, it arrives to Katowice at 15:50. It leaves from the main train station in Prague. There is a night train from Prague to Krakow at 21:32, you will be in Krakow next morning at 6:24.

Erika
Hi Erika, I saw you on the video. You looked very happy to be getting this done as you say and not scared at all. I am happy you only needed one stint and that they found a stricture to fix. The video really helps and a english version would be even better. I work in a hospital and can tell they are very professional and capable. The equiptment looks to be excellent. They dont wear mask but that is fine for me, as long as they dont have cold. :lol: Can you tell me how long the diagnostics and procedure take in days time so we can plan are trip. Did taking the stairs not hurt a bunch? How many stories is the hotel? I am just waking with coffee so I might think of more later. Thanks for your response and Happy New Year. Good luck with follow up. That is a long trip for a follow up. I bet if you are taking aspirin they will let me just take my fish oils.
Matt
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Postby matchoo » Fri Jan 01, 2010 7:30 am

Pepe wrote:Hi Matchoo,

Last December we have been in Krakow for two days just for tourist reasons... after two days visiting this really beatifull city we travelled to Katowice by bus to do the Eco-Doppler and the MRV.

This month, January 2010, we are going to fligth to Katowice airport... to get the operation done by Dr. Simka's team...in Katowice, of course. So, no reason, this time, to go to Krakow.

Erika, Mutley, Edser, Wonky1, Fatima, Ibrz...are members who have been in Poland too and I am sure that their posts would help you a lot to organize the trip. Feel free to ask for anything. All of them are friendly people who love help others...

Pepe.
Hi Pepe,
Thank You for reply. I hope to have 2 weeks for entire trip. Krakow I trust as you say is beautiful. I wonder what time of year oct is. Is it winter or summer? I hear Prague is another nice city not hurt by WWII bombs. On the other hand maybe I should stay healthy and get straight to the procedure. Be a tourist on follow up visit. Its good to hear Katowice has airport. I love that name. Maybe its a nice place to lounge too? All in all it was nice to receive acceptance letter so quick from Dr Simka. You can add yourself to list of nice people too!! :D
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Re: Oct 2010

Postby ErikaSlovakia » Fri Jan 01, 2010 8:02 am

matchoo wrote:Hi Erika, I saw you on the video. You looked very happy to be getting this done as you say and not scared at all. I am happy you only needed one stint and that they found a stricture to fix. The video really helps and a english version would be even better. I work in a hospital and can tell they are very professional and capable. The equiptment looks to be excellent. They dont wear mask but that is fine for me, as long as they dont have cold. :lol: Can you tell me how long the diagnostics and procedure take in days time so we can plan are trip. Did taking the stairs not hurt a bunch? How many stories is the hotel? I am just waking with coffee so I might think of more later. Thanks for your response and Happy New Year. Good luck with follow up. That is a long trip for a follow up. I bet if you are taking aspirin they will let me just take my fish oils.
Matt
[/quote]
Yes, I was very happy! Like 5 years old child before Christmas :D
They can do the diagnostic within 1-2 days. You must spend the first night after your procedure in hospital for sure. You should stay at least 2 more nights in a hotel just in case.

The 27 stairs was just a little problem the first day.
You can choose another hotel of course. This one - Franz Josef is very close to the hospital. I did not want to complicate my life. Taxi is cheap in Poland so it would be OK.
I take fish oil as well. Do you think it might be a problem with Aspirin?
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
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Re: Oct 2010

Postby matchoo » Fri Jan 01, 2010 8:23 am

ErikaSlovakia wrote:
matchoo wrote:Hi Erika, I saw you on the video. You looked very happy to be getting this done as you say and not scared at all. I am happy you only needed one stint and that they found a stricture to fix. The video really helps and a english version would be even better. I work in a hospital and can tell they are very professional and capable. The equiptment looks to be excellent. They dont wear mask but that is fine for me, as long as they dont have cold. :lol: Can you tell me how long the diagnostics and procedure take in days time so we can plan are trip. Did taking the stairs not hurt a bunch? How many stories is the hotel? I am just waking with coffee so I might think of more later. Thanks for your response and Happy New Year. Good luck with follow up. That is a long trip for a follow up. I bet if you are taking aspirin they will let me just take my fish oils.
Matt

Yes, I was very happy! Like 5 years old child before Christmas :D
They can do the diagnostic within 1-2 days. You must spend the first night after your procedure in hospital for sure. You should stay at least 2 more nights in a hotel just in case.

The 27 stairs was just a little problem the first day.
You can choose another hotel of course. This one - Franz Josef is very close to the hospital. I did not want to complicate my life. Taxi is cheap in Poland so it would be OK.
I take fish oil as well. Do you think it might be a problem with Aspirin?
Erika[/quote] Thanks Erika,
They must give something for topical pain. The needle in the femoral vein had to sting a bit. Maybe creamof ELMA. I also wonder if they have a room on ground floor so you wouldnt have to do stairs? Has anyone checked prices and condition of other hotel with elevator? How long was before you could function normally? Plus fish oil I know is a blood thinner. I never heard anyone say how much oil to do the job the same as aspirin. I know if I take too much I bruise easily. I slept on a 5 inch incline bed last night. dont know if I can do 6. I am already about to fall outta bed..lol...prior it was 4 for 2 nights. I may try another inch later. How many inches do you elevate? I saw the diaghram on here saying 6.
Best Wishes

Matt
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Re: Oct 2010

Postby ErikaSlovakia » Fri Jan 01, 2010 8:46 am

matchoo wrote:Thanks Erika,
They must give something for topical pain. The needle in the femoral vein had to sting a bit. Maybe creamof ELMA. I also wonder if they have a room on ground floor so you wouldnt have to do stairs? Has anyone checked prices and condition of other hotel with elevator? How long was before you could function normally? Plus fish oil I know is a blood thinner. I never heard anyone say how much oil to do the job the same as aspirin. I know if I take too much I bruise easily. I slept on a 5 inch incline bed last night. dont know if I can do 6. I am already about to fall outta bed..lol...prior it was 4 for 2 nights. I may try another inch later. How many inches do you elevate? I saw the diaghram on here saying 6.
Best Wishes

Matt

Hi Matt,
Well, I did not feel any pain only when I pushed the groin. I saw only one or two drops of blood but it was my fault I was movig too much and too fast. Just my bruise was bigger. I bought some heparin gel in a Pharmacy next day. Well, I have created more bruises. My balance is better now so I do not create bruises anymore.
They only have room on ground floor in hospital but only on the first floor in the hotel Franz Josef for sure. I asked them.
I think Mutley uses wheelchair and he stayed in another hotel.
Function normally? It is difficuilt question because I do not know what normally means for you. I left the hospital next day and I went by myself to another hospital in 2 days - by Taxi and I went home to Slovakia by myself by train - 4 hours and than by car.
It was not a problem for me so I think to be sure you need to have at least 2 days rest after the procedure only because of the groin. My MS was already better - I had more energy and my fatigue was much better.
Just do not dance :D
I did not know fish oil was a blood thinner!
Yes, you should sleep on 6 inches. My nausea in the morning is away for sure but I still have some problems with headache even in the morning.
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
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CCSVI

Postby Edser » Fri Jan 01, 2010 9:05 am

Good afternoon TiMS,
Congrat's to everyone who is after getting an appointment for 2010 :D
Slainte Mo Chara
Edser & Anna.
Never judge a Book by it's cover.
Edss Before Procedure:6
Edss After Procedure:4
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Re: Oct 2010

Postby Richardk » Fri Jan 01, 2010 6:10 pm

The 27 stairs was just a little problem the first day.
You can choose another hotel of course. This one - Franz Josef is very close to the hospital. I did not want to complicate my life. Taxi is cheap in Poland so it would be OK.
I take fish oil as well. Do you think it might be a problem with Aspirin?
Erika[/quote]

Erika
One question I have, which I may have missed in previous posts, is whether the testing and the angioplasty/stent procedures are done in the same city, ie Katowice I am scheduled for August, and your experience is invaluable...

Richard
dx'd 1996 SPMS EDSS 7.5
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Postby Alica » Fri Jan 01, 2010 8:45 pm

matchoo wrote:I bet Frankfurt is best then.



There are direct flights from Canada to Frankfurt, Germany with Lufthansa and to Amsterdam, Netherlands with KLM. Lufthansa and KLM are, in my opinion, the two most reliable airlines. For those who travel in the busy summer season, I would recommend to check out direct transatlantic charter flights to Dusseldorf or Munich, Germany. It’s considerably cheaper. Connecting flights are available from all these destinations throughout Europe.
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