Going to Poland!!!!

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

Postby ErikaSlovakia » Fri Nov 27, 2009 2:43 am

Nees wrote:I'm just having a doppler ultrasound initially, so I guess that's why I'm going to the Rolna Euromedic. Thanks for clarifying Erika.

Depending on results then we'll look at next steps. Fingers crossed for a nice obvious, easily treatable stenosis!

Fingers crossed!
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 Nees » Fri Dec 18, 2009 7:15 am

Hey

It seems there are lots of us going to Poland in January, let's have a show of dates and maybe we could get together and compare notes or just have coffee?

I'll be there 19th - 23rd Jan
MRV on 19th, procedure (ballooning) on 20 or 21st

Shaz
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Postby Nees » Fri Dec 18, 2009 7:32 am

Good luck! And let us know how it goes and how you're feeling post-op
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Postby Eep » Fri Dec 18, 2009 7:52 am

Nees wrote:Hey

It seems there are lots of us going to Poland in January, let's have a show of dates and maybe we could get together and compare notes or just have coffee?

I'll be there 19th - 23rd Jan
MRV on 19th, procedure (ballooning) on 20 or 21st

Shaz


Hi Nees,
We are from Amsterdam, NL and my wife will have the procedure in Katowice.

We'll be there 16th - 23rd Jan
MRV on 19th 19.30
OP (probably 2 stents) on 20th
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Postby Pepe » Sat Dec 19, 2009 1:58 am

Hi,

As I posted several days ago we have been in Katowice on December, 8th. Results of Eco-Doppler and MRV: Severe stenosis in the left internal yugular vein. The problem seems to be in the lower part of it... probably the valve...

After several days and many hours of consultation whith very close friends doctors and one interventional radiologist about the pros and cons of the intervention, the age of my wife, the risks, the potencial or hiphotetical benefits... and so on... they suggested us to do the procedure with (and only whith...) a vascular or endovascular surgeon or intervetional radiologist who were doing this specific procedure. What about Poland... we live in a richer country... with painted and modern Hospital facades? They said: no problems at all. They are doctors as the rest of the european doctors. Today the knowlegde has no frontiers. The interventional radiologist said: if my wife were your wife... I would ask the Polish, or the Italians or the Stanford colleagues to do the procedure without any kind of doubts or problems and... at present- today is Dec. 19th. 2009-, I would not allow to do the procedure to anyone else.

All these consultations were made out of the Hospital institution... in a familiar environment...

I do not know the end of all of these...I am not a doctor... I asked as much as I could... I did all the best to get the best advise after making the decision of doing or not doing the procedure in Poland... and the final decision is: we will do the procedure in Poland on January, 18th.

Regards,

Pepe.
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Postby whyRwehere » Sat Dec 19, 2009 2:16 am

Where are you living, again, Pepe? And did the interventional radiologist say they wouldn't suggest anyone else get done? I'm a bit confused about where you put the date (today is 19 December...).
Last edited by whyRwehere on Sat Dec 19, 2009 3:18 am, edited 1 time in total.
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Postby Algis » Sat Dec 19, 2009 2:46 am

Uhhh today is also Dec.19th for me (SE Asia) 8)
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Postby ErikaSlovakia » Sat Dec 19, 2009 2:46 am

Pepe wrote:we will do the procedure in Poland on January, 18th.
Regards,
Pepe.

Congrats! You made right decision!
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 colmmc » Sat Dec 19, 2009 3:27 am

I received this email today. and i can't stop crying I'm so happy,

Hello,

You are in the waiting list for "the liberation operation". The estimated time of the procedure is November 2010.

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.

Send your next emails in English (automatic translators are useless)

Best regards

Marian Simka, MD

Thank you one and all for the info on this site.
Colm
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Postby ErikaSlovakia » Sat Dec 19, 2009 4:03 am

colmmc wrote:I received this email today. and i can't stop crying I'm so happy,

Hello,

You are in the waiting list for "the liberation operation". The estimated time of the procedure is November 2010.

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.

Send your next emails in English (automatic translators are useless)

Best regards

Marian Simka, MD

Thank you one and all for the info on this site.
Colm

Congrats!!! :D
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
ErikaSlovakia
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Posts: 1124
Joined: Wed Jul 29, 2009 2:00 pm
Location: Slovakia, Europe

going to Poland

Postby tipsyturtle » Sat Dec 19, 2009 5:54 am

Thank you to you all for the information posted to date. I also am on Dr. Simka's list for April 2010. I am still in the process of gathering all the information that I can. Some of the questions that I have that have not been answered on this amazing site are basic: like if i have blockages and have a procedure how much time should I consider spending in Poland? I live in Canada and do not have someone here that is onside with this procedure yet. Is it a difficult recovery? What about flying after all these blood thinners?Did you bring any medical records ie. MRI's with you?
Am eager and anxious (read: a tad afraid).
jo
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Re: going to Poland

Postby ErikaSlovakia » Sat Dec 19, 2009 6:43 am

tipsyturtle wrote:Thank you to you all for the information posted to date. I also am on Dr. Simka's list for April 2010. I am still in the process of gathering all the information that I can. Some of the questions that I have that have not been answered on this amazing site are basic: like if i have blockages and have a procedure how much time should I consider spending in Poland? I live in Canada and do not have someone here that is onside with this procedure yet. Is it a difficult recovery? What about flying after all these blood thinners?Did you bring any medical records ie. MRI's with you?
Am eager and anxious (read: a tad afraid).
jo
Canada

Hi Jo!
I will try to answer. If I were you, I would stay at least 2 more nights in a hotel in Poland. It is difficuilt to say how much time you need. I do not know your EDSS I do not know how you feel now.
Actually I felt the day after the procedure better than I felt before the procedure. I only had to be careful not to lift heavy things and not to move fast. The wound in your groin will be very small. I did not have any problems with blood thinners. I did not have to bring anything with me.
So for me the recovery was to take care of my bruise. About 18 hours after my procedure I took my small suitcase and walked by myself to my hotel. I only asked the waiter to carry my suitcase upstairs to my room.
I simply took a taxi after 3 days and went home by train by myself.
I did not feel my stent.
Questions?
Erika
Oh, I almost forgot, you should not dance after the procedure :D
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
ErikaSlovakia
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Posts: 1124
Joined: Wed Jul 29, 2009 2:00 pm
Location: Slovakia, Europe

Postby AllyCanada » Sat Dec 19, 2009 6:47 am

Jo,

I too live in Canada and on the list for April 2010 :) I have emailed Dr Simka about time frame in Poland. He suggests that we plan for about 1 week, testing day, surgery day, one day in hospital and then at least 2 days before travel. I am still concerned about aftercare in Canada as well. I will keep everyone posted if I gather any more information.
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Poland

Postby tipsyturtle » Sat Dec 19, 2009 8:19 am

Thanks so much Erika. I have been reading your posts with great interest. Thanks for being so open and helpful. I noticed that you are on LDN- and that you continued after the procedure. Have you had an complications in resuming it? I started LDN about 3 months ago and am extremely happy with the energy it has given me. Did your energy improve after the stenosis?
How many return visits did you have with Dr.Simka after you returned home-if any? I understand you are injecting Clexane. Are there any other post op drugs? I do not have an EDSS. I only really began having problems 3 years ago. 1 major/2 minor episodes in 3 years. Have balance issues, fatigue, loss of feeling in hands and heavy feeling in legs.
Anyway, any misc. details you can provide about going to see Dr. Simka is helpful. I kinda thought that I would get tested and decide while there- perhaps staying in Germany for a month or so as I have family there.
jo
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