Jacek Kosteki
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BrendaReqier
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Poland Here I Come
Hello Everyone - I've been reading all your comments - learning so much of valuable information. I just signed-up on This is MS so hopefully I do this correctly - it's late and I'm not sure what the heck I'm doing. I'm also going to be in Tychy for the CCSVI adventure. Katherine has given me dates of June 25 - July 3. She was such a help - I was amazed how quickly she got the appointment - better than the 2 year waiting lists I'm on. I can't believe how many of us will be there at the same time. My Mom and I are going to Austria first (her homeland) and then over to Tychy. I'm sooooooooooooo excited. We'll arrive in Tychy on June 23 and depart July 6. Looking forward to touching base with you there. Keep well and safe travels.
Cheers Malinda
Cheers Malinda
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facetspera
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Hi, It is wild to find so many people from TIMS will be there during the same time. I am excited and nervous. What if they find nothing. What if nothing changes. What if things do change then revert back. What if everyone else is up dancing and I am sitting in my chair watching. What if what if....
One thing I have noticed is that when I mention my plan to people, the response is overwhelmingly positive. And I am surprised at how many people have heard something about MSs treatments in europe. The word is getting out.
How wonderful that the Internet has been so useful in uniting and empowering all of us.
One thing I have noticed is that when I mention my plan to people, the response is overwhelmingly positive. And I am surprised at how many people have heard something about MSs treatments in europe. The word is getting out.
How wonderful that the Internet has been so useful in uniting and empowering all of us.
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BrendaReqier
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you're right, I've been drowning in 'what ifs' for a couple of weeks now, but everyone, friends, family, online and off, are just so happy to hear that I'm going. So, I think we need to bask in all that positive energy and try hard to stay positive. One friend of mine that was just liberated in Poland a couple of weeks ago, commented something to me when she heard I wasn't feeling well. She said that she's noticed that most of the liberated people she knows including herself, were worse just before they went for the procedure. Kind of like a 'pre liberation syndrome", so stressing ourselves out just isn't healthy for us.
To all the 'what ifs'; we're all on the same roller-coaster. The way I have chosen to deal with it is to reduce my expectation to 2 possible outcomes:
1. They find nothing: I'll then return home with the benefit of 'less uncertainty.
2. They diagnose and treat CCSVI: In this case the best I can hope for is for progression to be halted, all the rest remains unchanged.
In the event of outcome 2., any improvement to my quality of life, as insignificant as it may seem, is a bonus. But as we all know, bonuses are automatically awarded only to bankers. Looking forward to meet you all. You are a group of pioneers and I commend you for your courage.
1. They find nothing: I'll then return home with the benefit of 'less uncertainty.
2. They diagnose and treat CCSVI: In this case the best I can hope for is for progression to be halted, all the rest remains unchanged.
In the event of outcome 2., any improvement to my quality of life, as insignificant as it may seem, is a bonus. But as we all know, bonuses are automatically awarded only to bankers. Looking forward to meet you all. You are a group of pioneers and I commend you for your courage.
Hi everybody
I have been reading avidly on this site and on this thread in particular and you all seem happy with Tchy and the set up there. I am glad for all of you that have improvements and hope everyone improves over time.
I have a date for June 8 with Dr Kostecki ( I think) Have to e-mail Katherine re details but I am very nervous about going. All I get from friends/family here (my gp/neuro doesn't want to know is warnings about risk etc and when one reads positive stuff on here, its great and then you read something negative like people developing other symptoms and the anxiety starts again.
Bill I understand that you will be there those same dates! My ms is fairly mild so far be nice to get but still lots of symtoms that cant be seen.
what i want to ask is if one didnt want a stent would they insist on it as I know its part of a study/research?
thanks and regards
Maureen
I have been reading avidly on this site and on this thread in particular and you all seem happy with Tchy and the set up there. I am glad for all of you that have improvements and hope everyone improves over time.
I have a date for June 8 with Dr Kostecki ( I think) Have to e-mail Katherine re details but I am very nervous about going. All I get from friends/family here (my gp/neuro doesn't want to know is warnings about risk etc and when one reads positive stuff on here, its great and then you read something negative like people developing other symptoms and the anxiety starts again.
Bill I understand that you will be there those same dates! My ms is fairly mild so far be nice to get but still lots of symtoms that cant be seen.
what i want to ask is if one didnt want a stent would they insist on it as I know its part of a study/research?
thanks and regards
Maureen
Hello Irishmum
I am sure it would be your choice whether to have a stent or not.
When I was there we were asked before the procedure to say whether or not we wished to have a stent if it was necessary. I dithered and asked questions and didn’t say either way. Then when I was having the procedure they had to ask me again.
They always try a balloon three times first. If that doesn’t work they use a stent but only if you have already clearly given consent. They ballooned my right jugular three times and it closed again each time. My right side was my worst side so my choice was to go away with my worst problem unfixed or have a stent. That made my mind up and I had a stent. As you probably know there are now hundreds of people who have been stented in Poland with no adverse events.
But of course you may not need one!
I am sure it would be your choice whether to have a stent or not.
When I was there we were asked before the procedure to say whether or not we wished to have a stent if it was necessary. I dithered and asked questions and didn’t say either way. Then when I was having the procedure they had to ask me again.
They always try a balloon three times first. If that doesn’t work they use a stent but only if you have already clearly given consent. They ballooned my right jugular three times and it closed again each time. My right side was my worst side so my choice was to go away with my worst problem unfixed or have a stent. That made my mind up and I had a stent. As you probably know there are now hundreds of people who have been stented in Poland with no adverse events.
But of course you may not need one!
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BrendaReqier
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Hi AmcG
Thanks for explaining the stent situation. I am nervous about having one I know I may not need it and I might not even have ccsvi either. As my brother was told he had an irregular venous system in his abdominal cavity when he was being checked out for sticky blood and blood cloths, I am more worried about being told something similar that is not repairable.
Your improvements were amazing, I hope it continues for you.
Hi Billmeik,
English is my first language although you wouldn't think so from my post - it will be great to have a gp there! I had to change my flights to be there on time to meet the Neurologist but have heard nothing since. Not long to go now. Looking forward to meeting you.
Regards
Maureen
Thanks for explaining the stent situation. I am nervous about having one I know I may not need it and I might not even have ccsvi either. As my brother was told he had an irregular venous system in his abdominal cavity when he was being checked out for sticky blood and blood cloths, I am more worried about being told something similar that is not repairable.
Your improvements were amazing, I hope it continues for you.
Hi Billmeik,
English is my first language although you wouldn't think so from my post - it will be great to have a gp there! I had to change my flights to be there on time to meet the Neurologist but have heard nothing since. Not long to go now. Looking forward to meeting you.
Regards
Maureen
Hello Brenda,
I have a consultation with the neuro on the 8th which is the first part of the process for me. You will be able to tell us about the MRV when we meet...It almost feels like you know people already having spent so much time reading Tims. Good luck for your journey over- its only a short flight for me by comparison.
Looking forward to meeting you
Maureen
I have a consultation with the neuro on the 8th which is the first part of the process for me. You will be able to tell us about the MRV when we meet...It almost feels like you know people already having spent so much time reading Tims. Good luck for your journey over- its only a short flight for me by comparison.
Looking forward to meeting you
Maureen
To all the "What Ifs"...
The main one, and the one that's driving me to get my brother help is this one:
What if you didn't go and get worse in the next few months or years? What if you put off going for the surgery, and have additional irreversible brain damage in the meantime?
If you answer that one, it makes all the other "what ifs" so much easier to deal with.
As soon as we got our date, I got very scared. I had a little breakdown, and I'm not even the one with MS! I went through all those what ifs and almost psyched myself out of believing.
I've now looked at the situation with some sober eyes, and now I'm more excited than ever. I told my brother years ago that I would do everything I could to get him better, and have been volunteering with the MS Society ever since, as it's the only thing I could do. Now, the answer to the "What if he doesn't get any better" is really easy. The answer would be "I did everything in my power".
Good luck to all of you who are there this coming week! Stay strong and give us updates!
The main one, and the one that's driving me to get my brother help is this one:
What if you didn't go and get worse in the next few months or years? What if you put off going for the surgery, and have additional irreversible brain damage in the meantime?
If you answer that one, it makes all the other "what ifs" so much easier to deal with.
As soon as we got our date, I got very scared. I had a little breakdown, and I'm not even the one with MS! I went through all those what ifs and almost psyched myself out of believing.
I've now looked at the situation with some sober eyes, and now I'm more excited than ever. I told my brother years ago that I would do everything I could to get him better, and have been volunteering with the MS Society ever since, as it's the only thing I could do. Now, the answer to the "What if he doesn't get any better" is really easy. The answer would be "I did everything in my power".
Good luck to all of you who are there this coming week! Stay strong and give us updates!