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.

Postby bestadmom » Wed Jun 30, 2010 4:38 pm

Ernst,

I'm so happy for your wife and your family. You've worked so hard to make this happen and now you've all gotten what you so rightfully deserve - relief!

Michelle
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Postby Ernst » Sun Jul 04, 2010 1:04 am

Today I checked the Material, 2 cd:s about Marja's operation in Poland. Lots of MRI photos from brain and blood-flow film clips. I made short videoclip. This video editing is something new for me.. but learning :D

http://www.youtube.com/watch?v=uMwWEsSouEQ
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 dodgeviper » Sun Jul 04, 2010 11:11 am

Even set to piano music, pretty impressive.

More impressive is that what seems like a collateral outlet in the "before" portion of the video is absent in the "after" portion. So there must be less resistance to flow (and less or no reflux) after the ballooning and/or stenting.

That is music to everyone's ears.

Thanks Ernst.
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Postby SammyJo » Sun Jul 04, 2010 2:44 pm

Excellent news that your wife got the procedure done! Hope the pain goes away quickly. There may also be headaches, and the sound of pounding blood flow in the ears, but this goes away as the body adjusts.
RRMS '95 SPMS '02 | CCSVI 10/09 | Adult stem cells 2012 | http://www.patientsforstemcells.org/
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Postby Ernst » Wed Jul 07, 2010 1:06 pm

Yes, the operation was fine and effects were incredible.. but lasted about 5 days, and then came herpes attack :( and necktension and lower energylevel came back. Now we wait a bit that virus attack is gone and then hopefully good effects comes back. Im sure that if jugular vein is still wide and functioning wife will be the same like after procedure. But, now she nows what it feels like to be liberated; more energy, no necktension, more power, and both bodysides working same way.
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 Ernst » Wed Sep 01, 2010 10:53 am

Time to update :D

Now, it's about 2 months checkpoint since procedure in Ameds, Poland. Let's say that first month was unstable period, with fantastic moments to no-improvement-periods.. but since then (this last month) it has been absolutely wonderful and stable. At this moment you could say honestly, that you (or I) can't see that my wife Marja has MS. She has been so high with energy, she is happier and funnier than before and she is interested about things nowadays. Now she is also active with exercise and having more fun with walks/jogging, cause her legs are'nt heavy anymore. We are so happy about results and I really hope that CCSVI procedures will be made in Finland too. Next friday local reporter is coming to meet us, and at least there will be our story to local newspaper.
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 » Wed Sep 01, 2010 11:00 am

Ernst, how wonderful! Congratulations to you both!

Pam
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Postby Trine » Wed Sep 01, 2010 11:11 am

Ernst wrote:Time to update :D

Now, it's about 2 months checkpoint since procedure in Ameds, Poland. Let's say that first month was unstable period, with fantastic moments to no-improvement-periods.. but since then (this last month) it has been absolutely wonderful and stable. At this moment you could say honestly, that you (or I) can't see that my wife Marja has MS. She has been so high with energy, she is happier and funnier than before and she is interested about things nowadays. Now she is also active with exercise and having more fun with walks/jogging, cause her legs are'nt heavy anymore. We are so happy about results and I really hope that CCSVI procedures will be made in Finland too. Next friday local reporter is coming to meet us, and at least there will be our story to local newspaper.


So happy for you and your wife. This is encouraging. Thank you for the update.




:D
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Postby Shueywho » Wed Sep 01, 2010 12:57 pm

Thank you for the update. It is appreciated as information can become scant after a couple months. I imagine some are out living their lives to the fullest and are no longer stuck inside where the a/c and computer are. Some might be worried about posting negative, but we need it all. Thank You.

Sheila
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Postby Ernst » Wed Sep 01, 2010 11:12 pm

Im gonna update wife's improvements and condition now and then, cause Its important info for people following CCSVI. And Im gonna tell things just the way they are, good and bads.. and last 30 days has been so good, or even betteri than I expected.. cause symptoms are gone (she was mild before op but had symptoms: fatigue, "heavy legs", minor motorical issues in right side, chronic neck pain, etc.).. But after operation I could see her symptoms even better. I don't think that "wow, now MS is gone and defeated", but now I know for sure that CCSVI is related to MS and symptoms. Now I have scientific info, anecdotal stories and my wife's experience --> I absolutely convinced about CCSVI now.
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 coin » Thu Sep 02, 2010 6:26 am

Ernst!!! ; that sound s so Coooooooooooooooool:-)) congrats and all the best for your wife and you!!
....I hope that my husband who will have his treatment in exactelky 2 weeks fromm now, will follow the same path as your wife!
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ines
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Postby Ernst » Mon Sep 13, 2010 12:03 pm

Today I was most happy to read quite big article about my wife's condition after 25.june operation in Ameds. She was even in front page!!

Image

You don't probably understand finnish, but freely translated "help from Poland to multiple sclerosis" and under the photo reads something like "Marja runs, cause she can. Before MS took away joy from training/moving"

And inside the newspaper, there was quite big article about her MS history, CCSVI, Poland, effects.. and treatment-is-not-in-Finland-yet.. But I know that there will be more media and more pressure, so finally this will be in Finland - hopefully soon. We have quite good professionals with veins, so we'll see..

The article (sorry, in finnish but there is nice photo of Marja and our 5yr old son):
LOCAL NEWSPAPER STORY 13.9.2010
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 Johnson » Mon Sep 13, 2010 2:08 pm

Brilliant, Ernst.

I am happy for all three of you.
My name is not really Johnson. MSed up since 1993
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Postby L » Mon Sep 13, 2010 2:29 pm

Great news, glad to hear it!
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Postby Ernst » Mon Feb 07, 2011 10:19 am

Now over 7 months from procedure and Marja is doing so great. In fact, she is stronger than before her MS dx 8O, cause last months we have done weight exercises. I made some reading about exercising muscles, and I was very convinced that exercise is very good thing with MS. Her symptoms have been gone, and that is so wonderful. She is going to Ameds next summer, to check the flow, but if have to bet - im sure the flow is good.

Image
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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