My wife's turn next week in Poland - am I dreaming or not?

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

My wife's turn next week in Poland - am I dreaming or not?

Postby Ernst » Thu Jun 17, 2010 7:56 am

Today happened something that changed the whole day; i got e-mail from Ameds. I was expecting that mail cause I was goingt to Poland with local man with MS. In that mail there was very very big surprise.. I had to read it twice to understand that they offered canceled place to my wife (who was in queue). And operation time will be next week, on 24. or 25. june.
I called my wife and of course we decided to take this opportunity. So i mailed back and now we are making all the needed arrangements, just bought fly tickets.
Lots of thoughs in my mind.. maybe the biggest worry is if they don't find the CCSVI. My wife dx is 3,5 yrs and she is doing quite well. No medication, MS symptoms, some minor, some not. She has been on BBD since dx and vitamin D levels have been quite high all the time (about 120-190 nmol/l).
But next week we'll know lots more. Im gonna make my own "little research" there, see everything with curiousity, talk to people after operation etc etc. I have been reading CCSVI over year now and this feels like.. unbelieveble, and fantastic! Next week I'm much wiser man about CCSVI.

ps. this is written today 15.2.2013. In spring 2010 I though that my wife is "doing ok", but after PTA I understood the difference and now I can say that she wasn't ok nearly 3 yrs ago. It was the difference in her, that opened my eyes.. to evaluate her symptoms. For example fatique, it was worse than I allowed myself admit. We had quite horrible fights in 2009/2010, cause I didnt understand her fatique. Since PTA, no more fights about that, thats wonderful.
Last edited by Ernst on Fri Feb 15, 2013 8:00 am, edited 2 times in total.
My wife's 3 yrs post video: http://www.youtube.com/watch?v=eLeqLps8XR8

Our family: http://www.youtube.com/watch?v=p_QCKxeQAlg
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Postby cheerleader » Thu Jun 17, 2010 8:03 am

Ernst-
I'm so happy for you and your wife. You've been here since the beginning of this whole journey....and I know you will get more answers very soon.
take care,
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Cece » Thu Jun 17, 2010 8:04 am

I think Dr. Simka is finding ccsvi in 95-100% of MSers...not sure of the exact percentage but it is high...so there is much hope that he will find something in your wife!! Best wishes for next week!
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Postby Ernst » Thu Jun 17, 2010 8:55 am

Thank you Joan and Cece :) In Poland we are going to Ameds, so unfortunately there is no Marian Simka. But I've heard good things from two finnish women - who were there a week ago. Im sure that we are in good hands.
My wife's 3 yrs post video: http://www.youtube.com/watch?v=eLeqLps8XR8

Our family: http://www.youtube.com/watch?v=p_QCKxeQAlg
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Postby tzootsi » Thu Jun 17, 2010 9:26 am

What exciting news! Your wife's situation sounds very much like my wife - a mild case of ms, has been on the BBD for several years. My wife had the procedure done here in the USA 9 weeks ago, and has seen several positive improvements. Best of luck.
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Postby Ernst » Thu Jun 17, 2010 10:06 am

Looks like we are "on same boat" tzootsi :) Im curious, what kind of improvements did your wife had after procedure?
My wife's 3 yrs post video: http://www.youtube.com/watch?v=eLeqLps8XR8

Our family: http://www.youtube.com/watch?v=p_QCKxeQAlg
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Postby ErikaSlovakia » Thu Jun 17, 2010 10:19 am

Hi Ernst!
Great! Good luck!!!
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 bestadmom » Thu Jun 17, 2010 10:35 am

Congratulations to you and your wife! You've invested so much time into helping her and it is all going to pay off in a week. I wish only the best for you both.
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Postby SandyK » Thu Jun 17, 2010 4:55 pm

Wishing you and your wife the best of luck.
Diagnosed 1994, Self EDSS is 6.5
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Postby tzootsi » Thu Jun 17, 2010 5:52 pm

Ernst wrote:Looks like we are "on same boat" tzootsi :) Im curious, what kind of improvements did your wife had after procedure?


Her symptoms were - heavy leg, l'hermettes, weak right arm, morning spasticity, creepy skin sensations, cold right hand

9 weeks after the procedure - heavy leg still there, but slightly better, l'hermettes 90% gone, weak right arm is stronger, morning spasticity diminished, skin sensations diminished, cold right hand less often.
Also, right after the procedure, she said that everything seemed brighter and in higher definition. Although she never suffered from fatigue, she has even more energy now than before the procedure.
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Postby Needled » Thu Jun 17, 2010 5:53 pm

Great news Ernst and best wishes!! Will be looking forward to your updates.
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Postby Ernst » Thu Jun 17, 2010 8:39 pm

Thank you for your nice comments. I'll share our experience with you and MS:s in Finland. So next week I have a chance to follow two procedures; my wifes with minor symptoms and my acquaintance from local town; about 60 yrs man with more progression (using wheelchair, fatique, etc.). My mind is already in Poland, hard to wait.. so near. 8O
My wife's 3 yrs post video: http://www.youtube.com/watch?v=eLeqLps8XR8

Our family: http://www.youtube.com/watch?v=p_QCKxeQAlg
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Postby Vhoenecke » Fri Jun 18, 2010 7:16 am

Ernst,

I won't pinch you to check if you are dreaming because it would hurt! :lol: I just want to take this moment to wish you a wonderful trip to a great country. I loved my experience in Poland, there are excellent doctors in that country. Here is to the beginning of a new life with your wife.

Val
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Postby Ernst » Fri Jun 18, 2010 7:51 am

Thank you Val,

I know that if you pinch me, it would hurt :lol: cause I saw you on news and you were going strong. It was inspiring to see, very. Today I still feel this like dream.. next tuesday morning I and local man with MS are interviewed by local news channel. Im also filming myself before Poland and in Poland and after Poland :D ..collecting anecdotic data.
My wife's 3 yrs post video: http://www.youtube.com/watch?v=eLeqLps8XR8

Our family: http://www.youtube.com/watch?v=p_QCKxeQAlg
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Postby JoyIsMyStrength » Fri Jun 18, 2010 8:48 am

Bless you Ernst, it's been a long road hasn't it? I'll be in Katowice when you're there, sending warm thoughts to you and your wife.

Pam
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