Jacek Kosteki

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.
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BrendaReqier
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Post by BrendaReqier »

the other side of the 'what ifs' is such a great point! ok, that's it, i'm officially excited! I am even going to go and try to get some shoes today LOL. flats, comfy but something i can wear to dinner. If it turns out I can wear heels, they would be the perfect keep sake of poland eh?
I can't wait to meet you!
wow this has been such an enormous support, here and on Face Book. we all have a connection now that will last a very long time if not forever!
Brenda
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DBird
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Post by DBird »

Many good points on the "what ifs". I know the direction that all the prescription meds that my wife is prescribed is taking her. Symptom management, and not very well at that.
A trip to Poland on June 25th will be tiring for her, but at least there is some hope that things may change for the better, and we'll know that if it doesn't make much of a change, we tried. Not fairy dust, but something real that has many other MSers.
See some of you soon.
Steve
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WheelieBob
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Post by WheelieBob »

WheelieBob is going to Poland too!! Thanks to everyone on this thread for all the information leading to our decision to travel to Poland to be tested and (hopefully) treated by Dr. Kostecki for CCSVI.

Now that the decision has been made I have questions. When the PwMS is being tested and treated, is your significant other allowed to be with you?
Thanks for your help, I'm sure I will have more questions as we go along and any information anyone posts on this thread is greatly appreciated. We are really interested in people's actual experiences while in Poland as well as how you are feeling when you get home.

We are Canadians and hope to meet some fellow MSrs in Poland. We are supposed to go in September. We don't have our definite dates yet from Kate but I expect that will come later.

Mrs. Wheelie
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Googlie
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Post by Googlie »

WheelieBob wrote:WheelieBob is going to Poland too!! --snip--
Now that the decision has been made I have questions. When the PwMS is being tested and treated, is your significant other allowed to be with you?
--snip--

Mrs. Wheelie
When we were there 2 weeks ago, the answer was mainly no. I was able to sit in for the Doppler session, but that's it. I only did it because I was interested in how they did it and what it would look like,

In thread http://www.thisisms.com/ftopict-11751.html both the thread originator Alan, and Kate, my wife, posted some good information about their experiences in Tychy with Dr Kostecki.

I can add that myself and some of the other spouses/supporters were very supportive of each other. Don't worry, Mr Wheelie will be in good hands and so will you. I met some really wonderful people that I will always remember with great fondness. You likely will too - it's a shared experience.

Randall
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BrendaReqier
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Post by BrendaReqier »

I know dr. Simka allows spouses, my friend's hubby was with her the entire time. Maybe it depends on the dr. and the day.

omgosh one more day to pack!
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DBird
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Post by DBird »

Brenda, Hope you have a good flight, enough rest, and strength for what lies ahead. We'll wait to hear from you when you feel up to it.
Steve
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BrendaReqier
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Post by BrendaReqier »

ty so much steve, I'm really looking forward to it! hugs all!
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DBird
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Post by DBird »

This is an hour long but worth the listen. Parliamentary Committee in Canada.

http://www.facebook.com/l.php?u=http%3A ... 86&h=4be26
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1_sindy
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Post by 1_sindy »

BrendaReqier
Wishing you well,have a great trip hope we hear from you soon.
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garyak
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Post by garyak »

WheelieBob wrote:WheelieBob is going to Poland too!! Thanks to everyone on this thread for all the information leading to our decision to travel to Poland to be tested and (hopefully) treated by Dr. Kostecki for CCSVI.

Now that the decision has been made I have questions. When the PwMS is being tested and treated, is your significant other allowed to be with you?
Thanks for your help, I'm sure I will have more questions as we go along and any information anyone posts on this thread is greatly appreciated. We are really interested in people's actual experiences while in Poland as well as how you are feeling when you get home.

We are Canadians and hope to meet some fellow MSrs in Poland. We are supposed to go in September. We don't have our definite dates yet from Kate but I expect that will come later.

Mrs. Wheelie
I will probably be there in Sept too by the sounds of it.
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garyak
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Post by garyak »

What does Dr Kosteki suggest for follow-up with him immediately after liberation and also for medium and long-term followup?
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BrendaReqier
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Post by BrendaReqier »

ok I know I should be sleeping....long hours ahead soon. But he suggests 3 months depending. I think it depends on what you can do as well
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garyak
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Post by garyak »

BrendaReqier wrote:ok I know I should be sleeping....long hours ahead soon. But he suggests 3 months depending. I think it depends on what you can do as well
ty
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garyak
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Post by garyak »

Can't wait to hear new news from Tynchy, Poland
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1_sindy
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Post by 1_sindy »

Wishing you all a safe trip and a great out come for your testing, I can only speak for my self as a person on the out side wishing they can make things right for there mate or the one that has ms,we seem to go through things as well as our mates , all the questions and the thinking and praying for the blocked veins can get to you ( well it can me)i want my husband to be better and beeing a mom and the biggest care giver you ever met i want things right for him and every one with ms.I do know looking from the out side is very hard for the people watching things get bad, we want to help and be there for our loved ones ..................best of luck to everyone .......I wish all of the people with ms great news and the right to be tested and treated for this ugly ms and all that it brings to family and love ones ...............hugsssssss to all and the more people talk and post the stronger we get.
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