Fraser's Adventures in Poland...

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

Postby Mathd » Sun Mar 21, 2010 4:02 pm

Hi Fraser!

thanks for posting all this information!
have you seen other improvements??
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Postby fraser » Sun Mar 21, 2010 11:15 pm

Thank you again, for your continued support and kind words.

Yesterday my husband had some slight dizziness and we walked too far so his drop foot kicked in a little. We rested and he was fine (dizziness and drop foot gone). I was a little worried because everything was perfect for 2 days, but in the end I felt better because last night at dinner he had so much energy - which would never have been the case in the past with all that walking. At night he would have been "out of it", but wasn't in the least. SO weird! But the best weird ever. When we got back to the room he was up on the computer and I was zonked out in bed. He really is like a new person, but trying not to get too excited because things are probably going to crop up and I have to not worry when they do. Immediately after the operation things were perfect, which we never expected - that is why we needn't worry because to have some MS symptoms is still normal.

If you have a chance to go to Krakow for even the day, be sure to do it. An absolutely beautiful city. Our best meal in Poland was had at "Aperitif" on Sienna St. Wonderful, amazing meal! On Saturday I went on my own to see Auschwitz-Birkenau. Absolutely devastating. Words cannot begin to describe it.

We are leaving Poland today, and making our way home. We have one night in Frankfurt then back to Canada.

Our trip to Poland has been a very emotional one. All the fear and trepidation we felt before coming, is in the very distant past. Coming here has convinced us that CCSVI is the answer, or a big part of the answer. I know this because even if my husband were to take a turn for the worse, just having these few days of normalcy has convinced me. Although most people couldn't tell my husband had MS (little physical disability), it had a very big impact on our lives because of the cognitive issues. Seeing these for the most part disappear has filled me with hope and joy.

We will always have a very deep love and fondness for Katowice. What these brave Polish doctors have done for us, cannot be expressed. While the rest of the world is hashing (and writing nasty articles about Dr. Zamboni!) it out, they are affecting lives right now. When you see the evidence on the screen, you'll see it for yourself and understand. These veins have to be fixed. MS patients do not have the luxury of waiting 3-5 years. We will hold this place, this week in our lives, near to our hearts forever.

Marek & Matchek (sorry about the spelling!) you are the best. Thank you for taking such good care of us, and for helping us everyday. We will be forever grateful. Also, a big thanks and appreciation to all of our wonderful British friends - sharing this experience with you has been so, so meaningful. It meant so much to meet others that have been dealing with the same issues in their lives, especially grappling with CCSVI - but had made the decision to come. Finding other like-minded people here in Katowice was incredible.

I'll keep you up-to-date, and report on any improvements/setbacks.

Thank you again for your wonderful, encouraging posts during our week in Poland!
Fraser
Last edited by fraser on Sun Mar 21, 2010 11:31 pm, edited 1 time in total.
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Postby Johnson » Sun Mar 21, 2010 11:26 pm

Thank you, fraser.
My name is not really Johnson. MSed up since 1993
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Postby Salvatore24 » Sun Mar 21, 2010 11:42 pm

That's fantastic news Fraser, I am hoping this is the answer (or a massive part of it).
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Postby Robnl » Mon Mar 22, 2010 1:50 am

Hi Fraser,

Great to hear that all went perfect! I think we met on 18th march at Euromedic (eyetest)., I was the guy in the wheelchair.

Until now i do not have dramatic improvements, but surely some improvements.

Regards,

Robert
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Postby fraser » Mon Mar 22, 2010 3:28 am

Hi Robnl,

Are you from Holland? If so, we really enjoyed chatting with you, and your wife/girlfriend and her father?? Am I right??? I think it's normal not to have dramatic improvements. We had 2 perfect days, but since, my husband has felt a little dizziness from time to time, and if overdoing it his leg will act up. I think it's probably better to improve slowly - after all MS progression doesn't happen overnight either. I almost think when things happen to quickly it's harder to deal with the setbacks when they happen. Important not to panic though - things will get better.

I love meeting people from different parts of the world - so neat that everyone is gathering in this little hospital in Poland, who believes in this treatment.

Lovely to hear from you,
Fraser
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Postby mags4short » Mon Mar 22, 2010 6:03 am

Oh my word, I just love reading this forum, it is keeping me going.

I am excited, afraid and hopeful, but impatient to get the actual date. I am going in May and once I have the date I am sure I will go into overdrive.

Thanks for sharing your experiences.

Mags x
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Postby ComfortablyNumb » Mon Mar 22, 2010 6:25 am

Hi Fraser,

Great to hear everything been so great for the two of you in Poland. I was so hoping it would turn out like this for you. I can hardly wait for my day in Poland and hope for some of the same. Hearing of your experiences has made it sound even more enticing (if that is at all possible).

Thanks :D
Stephen
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Postby Robnl » Mon Mar 22, 2010 7:32 am

Fraser,

Yep, that's me (btw it is my father).
:)

Robert
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Postby Brynn » Mon Mar 22, 2010 8:40 am

Wonderful trip, Fraser! Thanks for the restaurant recommendation. We are going a couple of days early this time and staying in Krakow before heading up to Katowice, so we will make a point of going to that restaurant! :D I am now a month away from our trip so I am getting anxious to feel that good again! Continued good healing and have a great trip home! Brynn
41 years old, dx 1998, current EDSS 6.5
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Postby QueenMum » Mon Mar 22, 2010 12:31 pm

Fraser,

Thank you so much for all the information about Poland, the people, procedures & your husband's progress. All of us searching for answers, appreciate the time you took to share your experiences. Please continue to keep us up to date.

For those of us who will follow, it helps to hear that the fear & anxiousness we feel is shared, but can be followed by relief, energy & hope for a brighter future.

Thanks again.... and Thanks to Katie41 for directing me to your posts.
Last edited by QueenMum on Sat Jul 10, 2010 7:35 pm, edited 3 times in total.
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Postby fraser » Mon Mar 22, 2010 11:28 pm

Hi Cheryl,

Amazing that Katie41 directed you to my posts - I actually met her yesterday while having breakfast! It's so cool meeting people in Katowice and then learning their ThisisMS user names. So exciting!!

Also....

I wrote a long post last night, which took ages to write, but somehow I think it was erased, SOB! I'll see if it can be retrieved this morning. Right now I'm on the computer in the lobby, which ISN'T A MAC so not having fun trying to write this. We are in Frankfurt, but leaving soon so will post once I'm home. Met a nice bunch of people just arriving for treatment yesterday as we were leaving - it is so great meeting others that travel to Poland for CCSVI, a truly bonding experience. I think it's because those that take the leap, are kind of like-minded people. That's definitely been my experience - and after sharing our emotional states, before coming and while there, we had so much in common. It was really comforting to know we weren't alone.

I actually felt sad leaving Katowice yesterday - but so happy for the new people that arrived.

I'll post again soon!
Last edited by fraser on Tue Mar 23, 2010 3:12 am, edited 1 time in total.
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Postby Johnson » Tue Mar 23, 2010 1:01 am

fraser, thanks so much for your account. You write wonderfully. Your excitement is palpable, and you have brought a lot of light. I found myself smiling a lot, reading your posts.
My name is not really Johnson. MSed up since 1993
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Postby Lelo » Tue Mar 23, 2010 1:44 am

Hi Fraser and Congrats :) Must add that after two weeks I still Misses Poland and all the nice people. So that is a bad sideeffect I think :(

Lots of love from Sweden and Lelo
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Postby openmind » Wed Mar 24, 2010 5:32 am

Hi Fraser
Hope you both got home safe and sound, thinking about you both all the time and our lovely experience in Poland. I will remember it forever.
Maciek took us to the airport on Monday and my bladder infection had really kicked in so it was a bit traumatic!! BLess him, he was lovely and waited patiently whilst Nigel search through luggage to get clean trousers for me, how embarrassing!!! i was in tears when we left, it all became a bit much and i was sad to be leaving our lovely group behind. It really was a special time.
Yesterday i was peeing blood and couldnt hold my weight at all but after taking antibiotics now :cry: i am feeling much better today. My emotions were all over the place too. I will paint a picture of Krakow for you and send it to you! Keep in touch. Jo and Nigel xxxxxxxxxxxxxxxxxxxxxx
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